blog.bioethics.net

The Dusty Old Bioethics Blog

2010-02-23T04:25:00.000-05:00

At last we've found a few minutes to take apart the bits of the bioethics blog's archives and store them in an accessible place. That is what this is: an archive. The blog posts that are not signed in this archive were authored by yours truly, Glenn McGee, as Editor-in-Chief. Everyone else had to identify that they weren't the editor. Back then it made sense. To a contemporary reader, it will probably appear that the "unsigned entries" are sort of like the editorial content of the neocon bioethics "journal" New Atlantis: too acerbic for anyone to claim authorship. But really this was just our blog convention: the editor didn't sign posts, and it was explained in the "about this blog" page.

The real blog.bioethics.net is very much alive and well at, well, that address: http://blog.bioethics.net, and the Editors of The American Journal of Bioethics are now multiplying, as that journal has spawned AJOB Neuroscience (The American Journal of Bioethics Neuroscience) and AJOB Primary Research (The American Journal of Bioethics Primary Research). The current form of the blog is authored by Executive Editor of The American Journal of Bioethics, Dr. Summer Johnson, who is also Director of Graduate Studies at the Center for Practical Bioethics.

If you've found this site, enjoy some of the early years of our experiment in a blog by the editors of a biomedical journal...the "finding a voice" years. From the tracing of the Korean stem cell scandal to celebrations of some of the heroes in bioethics (professionals and non-professionals alike), there is a lot here. But keep in mind that this is the dusty old bioethics blog archive. The daily updated blog is here. Thanks,
Glenn McGee, PhD
Editor-in-Chief, The American Journal of Bioethics, and
John B. Francis Endowed Chair in Bioethics, Center for Practical Bioethics

German Scientists Remove HIV-1 From Human Cells

2007-06-29T06:06:00.000-04:00

Today's issue of Science includes a publication by researchers at the Heinrich Pette Institute for Experimental Virology and Immunology in Hamburg and their partners at the Max Planck Institute for Molecular Cell Biology and Genetics, discussing the results of their attempt to use enzymes to remove a specific, rarely mutating sequence of HIV-1: successful results.

The treatment would involve removing blood from a patient, isolating their stem cells from that blood, treating with the enzymes, then returning the treated cells to the body to "boost" the immune system. Of course, there will first be several years of mouse trials before human trials, but they are cautiously optimistic that there will be a cure for HIV infection within a decade.

While it is of course important to note that this is high-tech medicine that would at least initially only be available to the wealthy (or at least well-insured) in industrialized nations, it is equally hard to not be excited by the potential within this research.

-Kelly Hills

Two Studies of SSRI Antidepressant Use During Pregnancy Are Reassuring

2007-06-28T14:57:00.000-04:00

Two new studies (CDC and Slone), published in the June 28, 2007 issue of the New England Journal of Medicine, examine whether or not SSRI antidepressants contribute to birth defects if taken during pregnancy. The results are very reassuring. In an accompanying editorial by Michael F. Greene, MD, he writes:

...neither SSRIs as a group not individual SSRIs are major teratogens on the order of thalidomide or isotretinoin. Patients and physicians alike would prefer it if there were clear lines separating "risk" and "no risk" and if all studies gave consistent results pointing in the same direction. Unfortunately, this is often not the case, and the data to inform potential risks of SSRIs are no exception. The two reports in this issue of the Journal, together with other available information, do suggest that any increased risks of these malformations in association with the use of SSRIs are likely to be small in terms of the absolute risks.

I've listened to and read some of the media reports on these studies and want to commend the authors and journalists for presenting a balanced picture of the risks. The researchers are quick to point out that these studies do not compare the very small increase in absolute risks that they found for some very rare birth defects to the risks of not treating depression during pregnancy. Inadequate treatment of depression during pregnancy has been linked to self-neglect, poor nutrition, tobacco and alcohol use, lower utilization of prenatal care, exacerbation of postpartum depression, and maternal suicide. Maternal depression increases stress hormones that may also affect placental function and fetal development, disrupt mother-infant bonding, contribute to low birth weight and prematurity, and result in long-term physical and behavioral complications. The Committee of Research on Psychiatric Treatments of the American Psychiatric Association identified treatment of major depression during pregnancy as a priority area for improvement in clinical management.

Studies indicate that between 10-20% of pregnant women experience depression. Women with a history of depression have a 70% chance of a recurrent depressive episode in the first trimester when antidepressant drugs are discontinued prior to or at the point of conception.

Based on the findings from these two studies and what we already know about depression during pregnancy, health-care providers and members of the media are being responsible when they caution pregnant women about stopping the use of SSRIs simply because they are pregnant. The decision about whether to continue or discontinue taking an antidepressant during pregnancy is one that women need to make with all the facts and with the assistance of an informed health-care provider.

Andrea Kalfoglou
Cross-posted to the Women's Bioethics Blog.

Recognizing blogging talent when they see it, the Women's Bioethics Blog has recently asked Andrea to become a part of their writing team. She joins their fabulous staff of writers, who include our regular blog contributers Kelly Hills and Sean Philpott (who is also responsible for the bioethics newsfeed), as well as AMBI faculty Alicia Ouellette and Linda MacDonald Glenn. Congratulations, Andrea!

The Locus and the Aphis - Moving Towards Herland

2007-06-28T11:30:00.000-04:00

"What strikes you as the oddest feature of your experience, so far?"
I considered. "There's so much—"
"Might it not be that you have not seen a single man?" she suggested.
I thought back. I remembered the wondering tone of one of the Mothers asking: "What is a man?"
"That's certainly one of them," I agreed. "Where are they?"
She shook her head, watching me steadily.
"There aren't any, my dear. Not any more. None at all."
-Consider Her Ways, John Wyndham

As news comes that scientists have created human embyronic stem cells from unfertilized eggs, the perennial dystopic fear of a world without men is once again racing through the media. Coupled with recent advances in creating sperm from bone marrow, and the assumption that it will be possible to use female bone marrow to make sperm, and we're on our way to Herland.

But the idea of a single-gendered society isn't new; in fact, it's a common science fiction trope that’s hauled out whenever reproductive advances (or discoveries, if you’re not so sure it’s an advance) are announced. And whether or not that fiction is dystopic or utopic probably depends on your point of view - or at least your gender.

Like most dystopic fiction, the single-gender society stories are warning stories about what’s going on in contemporary (for the time they were written) culture. Some, such as Herland, are making exaggerated arguments that woman can be equals to men, while others reflect the thinking behind separatist feminism. It’s actually in Wyndham’s short story, published in the 1950s, that I think we can see what the actual issue is behind these ideas of new reproductive methods.

So when the crisis came it turned out that scarcely any of them knew how to do any of the important things because they had nearly all been owned by men, and had to lead their lives as pets and parasites.
-Consider Her Ways, John Wyndham

I am not actually convinced that the issues behind any of the articles questioning the ethics of the research into “eliminating men” are actually ethical issues of medicine. I’m inclined to believe that they are ethical issues about society, reflecting anxiety about the social role of men, women, and the family unit. As we’ve talked about, the very basic notion of what a family is, is in flux - one mom, two dads, no dads? And with that flux, comes fear - fear of the unknown, fear of what technological potential is out there, and just maybe, the fear of not being needed at all.

In my previous musings on family, I said that what matters is not the genetic code tying us together, but the social construct that allows us to feel tied together. The logic seems to go, if women can do everything men can, without men, including creating a child, then what do we need men for? In other words, what happens if the social construct changes?

It’s a good question, and excellent fodder for science fiction stories. But personally, I don’t see it moving beyond a good story – not in any mass scale way that’s going to shake the very fabric of society. Certainly reproduction is being detached from sex, it has been and is becoming moreso as new ways of reproducing and assisting reproduction are being discovered. That doesn’t make sex any less fun, though – it just makes it not intimately tied to reproduction. And as technology continues to progress, we’ll need to continue redefining what it means to have children, and to be a family.

But short of a mass plague that wipes out most, or all of a gender, I simply have a hard time believing that we’re going to render man, or woman, extinct. Not necessary to reproduce, probable – but not necessary at all seems only the realm of fiction.

-Kelly Hills

ACT creates embryonic stem cell line; keeps embryos alive

2007-06-27T14:52:00.000-04:00

Advanced Cell Technology (ACT) announced in Nature Magazine in August of 2006 that they were creating embryonic stem cell lines from biopsied embyros. The headlines were a bit misleading, suggesting that this method did not result in the destruction of the embryos, when it did. Today, ACT announced at the fifth annual meeting of the International Society for Stem Cell Research (ISSCR) in Cairns, Australia that they had created three separate embryonic stem-cell lines without actually destroying the biopsied embryos. These three embryos are still alive in a freezer. ACT is now calling upon NIH to fund research using these three stem-cell lines because their creation is compatible with President Bush's statement he made following his veto of a bill from Congress that would have expanded federal funding for embryonic stem-cell research. While I applaud ACT's creativity in trying to work within the current US regulatory limits on embryonic stem-cell research, I'm curious what ACT plans to do with these frozen embryos. Will they ever be gestated, or will they just remain "undestroyed" for the next few decades? Another question that bugs me: who actually "owns" these embryos? If they are gestated and born, will they have "registered trademarked" stamped on their foreheads?

-Andrea Kalfoglou

Primate Cloned Stem Cells? Maybe.

2007-06-21T14:38:00.000-04:00

China Central Television (CCTV) is reporting that US researchers (Shoukhrat Mitalipov of the Oregon National Primate Research Center) in the US have produced the first embryonic stem-cell line using SCNT (cloning) from rhesus monkeys -- and that they were able to get these cells to differentiate. The researchers reported their findings at stem cell research conference in Cairns, Australia, this week. From the report, it sounds like Dr. Mitalipov has the data to prove his claim, but after the Korean human stem-cell scandal, we should all be skeptical until the peer-reviewed publication is out.

In other stem-cell news, scientists in Belgium report that they were able to create 13 "embryos" using in vitro matured oocytes and SCNT. 13 cleaved to the 2 cell stage; 10 went beyond the 2 cell stage; and two cleaved multiple times creating morulae. This is exciting news because it means that cloned human stem cells might be possible to produce using ovarian tissue rather than requiring women to go through an oocyte donation process to procure in vivo matured oocytes. The research also shows that oocytes, harvested for reproductive purposes, that fail to fertilize, also are unsuccessful candidates for SCNT.

-Andrea Kalfoglou

Bush Vetoes Stem Cell Research Act

2007-06-21T11:32:00.000-04:00

Well, as expected, Bush has vetoed the recently passed measure lifting the restrictions on human embyronic stem cell research.

As the New York Times notes, this veto

puts him at odds not only with the majority of voters, according to polls, but also with many members of his own political party. Republicans sent him a similar measure last year when they controlled Congress. But even with considerable support from the Republican minority this year, Democrats concede they do not have enough votes for a veto override.

The veto also guarantees that debate about hESC research will be at the forefront of the 2008 presidential elections. Regardless of the candidates position, they're going to have to talk about the ethics and science of the research and attempt to sway the voters to their particular views - anyone know how many candidates have bioethicsts on staff this time around?

Given how many states have started to fund stem cell research on their own, it will be interesting to see if any candidate believes that advocating a Bush-like ban on hESC is a viable campaign platform, and if so, how they will justify being so out of touch with voter prferences.

-Kelly Hills

Edited at 2:35pm EST:
This segment of NPR's Morning Edition contains an interview with Alta Charo, discussing how the restrictions affect scientists, and Andrea Kalfoglou writes in with the suggestion that people interested in a comprehensive read on the stem cell measure and veto check out this link. Thanks, Andrea!

Art Caplan on MSNC: Media’s Cooing Over Sextuplets is a Disservice

2007-06-21T11:03:00.000-04:00

Over on MSNBC, Art Caplan writes about news outlets going gaga over megamultiples, and forgetting to report the downsides:

One of the biggest problems arising when megamultiples — more than three babies born all at one time — arrive is the gushing media coverage of the births. First, there's the dash to get a camera into the nursery for baby pictures. Exhausted moms are interviewed right after birth, dazed but thrilled about their little miracles. Dads are shown looking exhausted and overwhelmed as they meet their basketball or hockey team to be.

Why quintuplets, sextuplets and septuplets happen and what the real price is in the long run for megamultiple births are subjects that, while crucial for understanding the reproductive revolution and its benefits and costs, remain almost unexamined in newspaper, television and magazine accounts. And that is unfortunate, because these costs aren’t limited to just health and financial challenges faced by the family welcoming the new additions, but to society as well.

Earlier this month, two sets of sextuplets were born after their parents used assisted reproductive technologies, and their births generated a lot of media attention. Brianna and Ryan Morrison had four boys and two girls at Abbott Northwestern Hospital in Minneapolis on June 10. Ten hours later, Bryan and Jenny Masche welcomed three boys and three girls at Banner Good Samaritan Medical Center in Phoenix.

The “TODAY” show spent a considerable time cooing about the births of two sets of sextuplets in such a short period of time. The show jumped right into the lives of the Phoenix family. Thirty seconds did not elapse during story promos or actual coverage without the word “miracle” being invoked. The NBC program was hardly alone in going weak-kneed over the births of so many of babies.

CNN chimed in with “good news” reports on its “American Morning” program. The newscaster noted gleefully how “tiny” the babies were.

TV coverage in Phoenix described the births as “gifts” and “bundles of joy,” among other gushing terms. Stations pitched in to help the family raise money and collect baby diapers and clothes. The Minnesota media did not miss a chance to refer to their local sextuplets as “blessings.”

The Boston Globe, Newark Star Ledger and many other papers ran short stories that heavily emphasized the good news about the sextuplet births and noting how pleased and happy the parents were.

Going gaga
There is plenty to celebrate when babies are born. I am not arguing that joy and delight have no place in media coverage of these events. But the media owe us more than just cheering, gushing and cooing when reproductive technologies create babies in numbers that do not occur naturally and, more seriously, that carry tremendous risks.

In the case of the Masches, the mother went into life-threatening heart failure right after the births. Too much blood was in her body from supporting all the fetuses and she nearly died. News reports noted this problem but passed over it to get back to the positive side of megamultiples. The Minnesota babies were born extremely premature at 22 weeks. Sadly, three have already died.

But the downside of megamultiples, in terms of risk to the fetuses or the moms, got little media play in the initial stories about the two sets of sextuplets.

When megamultiple pregnancies occur due to fertility treatments, it spells potential trouble for both the mother and the fetuses. Gestational diabetes, strokes and preeclampsia — a potentially lethal form of hard-to-control high blood pressure — are huge risks for moms having more than twins. And moms expecting triplets or more are almost guaranteed to have Caesarean sections.

The babies themselves are put at grave risk when there are more than two. Having megamultiples means the babies face less room to grow in the womb, prematurity and low birth weights. All of these translate into high risk for mental retardation, learning disabilities, cerebral palsy and vision and hearing loss for the babies. They are also 20 times more likely to die in the first month of their lives than singletons.

Infants born in big numbers also need to spend a lot of time in neonatal intensive care units to allow vital organs to develop, which means they require expensive, high quality medical care. Those costs are almost always borne by either insurance plans or state Medicaid funds, meaning you and I pay their bills. And obviously, if there are complications that affect the children as they grow, helping the kids — and the parents — with their health problems through special education, multiple surgeries and rehabilitative care can run into the millions of dollars.

No accident
Multiple births are not, as the media coverage would have you believe, unadulterated, wondrous miracles with no downside, nor are they generally the result of accidents, divine will or luck.

Fertility clinics sometimes transplant more than three embryos at a time into women, knowing that megamultiples could result. But a clinic can look good in comparison to its competitors by saying it can succeed in delivering babies to infertile couples. So some, incredibly, continue the practice, understanding it may be at the cost of the mom and babies’ health.

Some infertility programs also give women drugs to make them ovulate more, but then don’t monitor the patients carefully to ensure that the couple doesn’t have unprotected sex if the drugs are a little too successful and produce too many eggs.

And some clinics do not explain clearly what the real dangers are of having megamultiples. Nor do they fully encourage the option of eliminating one or more of the fetuses in utero — a procedure called selective reduction — to preserve the health of the more viable babies if there are complications or problems in the pregnancy.

Megamultiple births are not the miracles the media makes them out to be. In fact it could be argued that we should be doing more as a matter of public policy to discourage megamultiple births by getting infertility programs to do more to minimize the risk of creating them. But, given the kind of “check your critical senses at the door” media coverage that always seem to accompany these births, these are not ideas you are likely to be asked to consider in thinking about the realities about megamultiple births.

What about all those frozen embryos?

2007-06-20T16:03:00.000-04:00

An interesting paper looking at the potential fate of the nation's hundreds of thousands of frozen embryos will show up Thursday on the Science site (It's there now -- see also two related press releases from Duke and JHU). Ann Drapkin Lyerly (Duke Med Center) and Ruth Faden (JHU's Berman Institute of Bioethics) surveyed more two thousand infertility patients from across the country (response rate: 60%) about their preferences for the disposition of their leftover embryos. The authors report that among survey respondents who still had embryos in the freezer, 49% indicated that they were "somewhat" or "very likely" to donate their embryos for research purposes. This group expands to 60% if the question narrows the possible uses to stem cell research.

After making a few assumptions and taking the survey responses into account, the authors conclude that infertility clinic freezers currently hold somewhere between two thousand and three thousand potentially available and viable stem cell lines.

One other interesting finding from the survey: the number of respondents who reported being somewhat or very likely to donate their embryos for cloning research was larger than that of those who would donate their embryos to another couple hoping to have a baby.

-Greg Dahlmann

Why Can't You Use Sex to Sell Condoms?

2007-06-18T12:41:00.000-04:00

The NYTimes reports that the makers of Trojan condoms have developed a new marketing campaign called "Evolve." The message is all about thinking about your own health and that of your partners everytime -- a great public health message. However, CBS and the FOX networks are refusing to air these new TV commercials even during late night programming. This ad seems tame compared to some that are used to sell Viagra, shampoo (remember the "Organic" experience), and even dishwashers. Hurray to ABC, NBC, MTV, Comedy Central and Adult Swim who will air the commercials, and a great big wimp award to CBS and FOX.

-Andrea Kalfoglou

On Human Genomes and “Rewriting the Textbooks”

2007-06-18T12:36:00.000-04:00

I hate when the media proclaims, “They’ll have to rewrite the textbooks.” It’s easy for them to say. They don’t do it.

I do.

That phrase will likely be bandied about this week with the multiple publications from the ENCODE project. That stands for the Encyclopedia of DNA Elements Project, a mega-effort from 35 research groups around the globe to dissect a representative 1 percent of the human genome (The ENCODE Project Consortium, Genome Research).

True, the media/public may have gotten their fill of geno-news of late, what with the grandstanding PR event of James Watson having his 3 billion DNA bases exposed, so to speak, and the turning on of stemness genes in mice, apparently circumventing the embryonic route. And if Paris Hilton tries a jailbreak, all news of import will vanish.

I’m the author of a college-level human genetics textbook, currently working on the 8th edition – I now measure my lifespan in editions (Lewis, forever). It’s not written by a nameless committee with a lone EdD slapped on the cover, nor a computer, nor am I just an assistant to a “real” scientist. Forgive the defensiveness, but I get these comments often. People write textbooks, and people who write science textbooks are generally scientists.

Whether or not to make a radical change in a textbook is a judgment call based on knowledge of the field, and of science in general. Basically, a finding has to be repeated sufficiently to stand the test of time. It doesn’t necessarily have to make sense or go with the prevailing wisdom. This is the case with the ENCODE findings. Among a deluge of data, what has emerged is that much of the DNA sequence that evolution has apparently conserved in diverse genomes (I’m not talking an Italian compared to Nigerian, but, say, a wombat to an ape) needn’t have the same or even any apparent function. Yet disturbingly many DNA sequences that are diverse and unique and therefore not thought to be constrained by evolution can nonetheless have important functions. This will turn the idea that “if it’s important, evolution would have kept it much the same across species” on its head.

An equally important finding makes me want to get up and cheer. “Junk” DNA isn’t junk after all. I can hear a collective “duh” from the genetics community. The unfortunate term “junk DNA”, while possibly first uttered by geneticists back in the 1970s in the wake of the discovery of introns (Gilbert, 1977), quickly became a media term that has gained momentum, even as geneticists have indeed discovered what much of the DNA sequence that doesn’t encode protein actually does. (I distanced my book from the term early on: “Said one speaker at a genomics conference, ‘Anyone who still thinks that introns have no function, please volunteer to have them removed, so we can see what they do.’ He had no takers.”) I’ve never, ever heard a scientist call any DNA junk. Only those with mutations in the arrogance gene would term something garbage just because we can’t figure out what the heck it does.

Of course I’ve made mistakes too. Paramount among them was the mention of the adeptness of a certain Korean researcher in manipulating human embryos to obtain stem cells. I yanked that out fast when his adeptness at faking data was revealed. And I’d already mentioned ENCODE in the edition that is now gestating. But I’m spending this glorious Father’s Day, well, rewriting the textbook to knit these new results into the appropriate chapters. I suspect further changes lie ahead. ENCODE chose it’s representative 1% from 44 well-studied regions of the genome. But imagine describing a large lecture class from a specifically-chosen 1% of the students. Or the planet. Or anything. (Note to media: “well-studied”. Scientific advances are not overnight breakthroughs.)

The media will undoubtedly jump on the unexpectedness of the results too, playing it as a fault, of scientists flip-flopping, when in actuality, changing hypotheses to fit new data is the very essence of science. There is, after all, no such thing as “scientific proof”, despite the pervasiveness of the term. There’s only scientific evidence, and the more the better -- even if it turns long-accepted ideas upside down – like now.

I can’t wait for the next chapter.

-Contributing editor Ricki Lewis

The ENCODE Project Consortium, 2007. Identification and analysis of functional elements in 1% of the human genome by the ENCODE pilot project. Nature 447:799-816

Genome Research, 17(6), the entire June 2007 issue. http://www.genome.org/current.shtml

Gilbert, A. 1978. Why genes in pieces? Nature 271:501.

Lewis, R. Human Genetics: Concepts and Applications, McGraw-Hill Higher Education, 2007.

Overstating the Case of Genetic Selection

2007-06-16T00:53:00.000-04:00

In his latest op-ed column (below), conservative David Brooks overstates the case that everyone is looking to upgrade their future off-spring by using donor gametes. He's worried that people like him (under 5'9 and not blond) will become a dying breed. The truth is that most folks would really prefer to procreate with their spouse the old fashioned way. They only turn to gamete donation as an alternative when there's a breakdown in the system. While one percent of all US births are the result of IVF, less than 10% of those births involve and egg donor. Since no one keeps track, there's no way of knowing how many kids are born each year as the result of sperm donation; however, I really doubt there are enough where we will all eventually resemble Pamela Anderson or Arnold. Still, there are some pretty funny quotes.

- Andrea Kalfoglou

June 15, 2007
OP-ED COLUMNIST
The National Pastime

By DAVID BROOKS
At this very moment thousands of people are surfing the Web looking for genetic material so their children will be nothing like me. They are looking through files at sperm bank sites with Jetson-like names such as Xytex, which have become the new eBays for offspring.

These sites take sex and turn it into shopping. They allow you to browse through page after page of donor profiles, comparing weight, noses, personality and what one site calls “tannability.”

Shoppers can use these sites and select much better genetic material than would be possessed by someone they could realistically lure into bed. And they can more efficiently engage in the national pastime — rigging our childrens’ lives so they’ll be turbocharged for success.

When given this kind of freedom of choice, people seem to want to produce athletic Aryans with a passion for housekeeping. There is tremendous market demand for DNA from blue-eyed, blond-haired, 6-foot-2 finely sculpted hunks who roast their own coffee. These are the kind of guys you see jogging in the park and nothing moves. They’ve got a stomach, a chest and flanks, but as they bounce along nothing jiggles, not even their hair. They’re like Arnold Schwarzenegger in his prime from the shoulders down, and Trent Lott from the scalp up.

Nor is brainpower neglected. In a bow to all that is sacred in our culture, one sperm bank has one branch located between Harvard and M.I.T. and the other next to Stanford. An ad in The Harvard Crimson offered $50,000 for an egg from a Harvard woman. A recent ad in the Chicago Maroon at the University of Chicago offered $35,000 for a Chicago egg and stipulated, “You must be very healthy, very intelligent and very attractive, and most of all, very happy. Liberal political views and athletic ability are pluses.”

(Is liberalism genetic? I thought it was the product of some environmental deprivation.)

In any case, a Harris poll suggested that more than 40 percent of Americans would use genetic engineering to upgrade their children mentally and physically. If you get social acceptance at that level, then everybody has to do it or their kids will be left behind.

Which means that sooner or later reproduction becomes a casting call for “Baywatch” and people like me become an evolutionary dead end. For centuries my ancestors have been hewing peat in Wales and skipping school in Ukraine, but those of us in the low-center-of-gravity community will be left on evolution’s cutting-room floor. People under 5-foot-9 can’t even donate sperm to these banks, so my co-equals are doomed, let alone future Napoleons.

The people who do this will pay no heed to the fact that mediocre looks have always been a great spur to creative achievement and ugliness is the mother of genius.

In a world in which Brad Pitt is average, say farewell to loneliness, sublimation and nerds’ witty bids for attention. In a world in which everyone is smart, good-looking and pleasant, everyone will be fit to perform in hit movies, but no one will be fit to review them.

I’m not under the illusion that any of this can be stopped. Conservatives like me think that if you want your kids to have Harvard genes you should have to endure living with a Harvard spouse. But the rest of the country is not with us. There’s no way people are going to foreswear the joys of creative genetics. “I would probably choose somebody with a darker skin color so I don’t have to slather sunblock on my kid all the time,” one potential mother told Jennifer Egan of The Times Magazine last year.

So as my kind heads off to obsolescence, I wonder about the unintended consequences. What if it’s true, as some believe, that genes are dominant and home environment has little effect on children? You could have two lesbian bikers giving birth to Mitt Romney.

What if parents are perpetually buying genes on the downward slope? After all, for maximum success, you don’t want President Kennedy’s genes. You want Joseph Kennedy’s genes. You don’t want Bill Clinton’s genes. You want his father’s. What if we get the national equivalent of the 38th generation of the House of Windsor?

Or, on the other hand, what if nurture still trumps nature? After all, if you look at world-historical figures you’re struck by how many had their parents die when they were about 12. How many superconcerned moms and dads are going to put that in their datebook?

Stem Cell Research - State Moving, Feds Not

2007-06-15T13:34:00.000-04:00

David Jensen notes in California Stem Cell Reports that the California Institute for Regenerative Medicine (CIRM), the agency which manages the state’s stem cell research program, has just awarded over $50 million in laboratory and training grants for human embryonic stem cell (hESC) research. These grants are intended to support research on stem cell lines which fall outside current federal funding guidelines. BY CIRM’s arithmetic, this brings California’s total hESC funding awards to over $200 million, or more than five times the $37 million NIH is expected to spend on hESC research this fiscal year. The CIRM press release with the details can be found here.

CIRM’s been active on other fronts as well. As David Magnus reported last week, the California Supreme Court refused to accept an appeal of a lower court decision that upheld CIRM’s constitutional status, which appears to clear the way for the state to issue the $3 billion in general obligation bonds authorized by Proposition 71. CIRM’s even going international. As reported here, the state of California and the Canadian province of Ontario have just announced a joint stem cell research program to which Ontario will contribute $30 million over 5 years.

California’s far from the only state that’s been active on the stem cell front this year. New York has more or less firm plans to spend some $600 million on stem cell research, and gossip has it that Governor Eliot Spitzer may introduce a proposal for a bond issue to support this research on a larger scale. Maryland has just awarded some $20 million in stem cell research grants, and the state legislature has just approved an FY2008 budget that appropriates some $23 million in research support. Connecticut is spending some $10 million per year on stem cell research. Massachusetts governor Deval Patrick has just unveiled a major package of stem cell initiatives that would spend some $1.25 billion in state and private funds, outlined here.

Meanwhile, things are moving slowly, if you want to call it moving, inside the Beltway. Congress is expected to take final action shortly on a bill which would expand the number of stem cell lines eligible for federal funding support, but the President has announced he’ll veto it just like he did last year, and there don’t appear to be enough votes to override a veto. Nothing’s going to happen until this administration leaves office, and not much may happen even then. Focusing on the feds is gonna be pretty boring for the foreseeable future — somebody want to organize a paint-drying contest to provide a little excitement?

-Jim Fossett
RIG/AMBI
Federalism and Bioethics Initiative

Nature Retracts Figure in Highly Cited MAPCs Study

2007-06-14T18:12:00.000-04:00

As is being reported, well, everywhere, Nature has made the decision, after review, to retract a figure used in a highly cited 2002 study on adult stem cells in (mouse) bone marrow. In this study, the researchers seemed able to coax those multipotent adult progenitor cells to form other tissues in the body. At the time, this was hailed as a major break through in adult stem cell research, and seemed promising for stem cell therapy, but the results have been difficult to replicate. And while the figure has been retracted, the paper has not.

Meanwhile, Catherine Verfaillie and her coauthors are now having other papers investigated by the New Scientist, who raised the initial concerns over the first image. Full details can be read here.

-Kelly Hills

Feminist Approaches to Bioethics (FAB) Takes Two Leaps Forward

2007-06-13T14:45:00.000-04:00

Our friend Andrea Kalfoglou writes:

Feminist Approaches to Bioethics (FAB), was founded in 1992 at the Inaugral Congress of the International Association of Bioethics, but it has recently taken steps to be a much stronger presence in the international bioethics arena. First, FAB has revamped its website. Second, FAB has founded a new international journal. There are descriptions of the first three planned issues with a call for papers listed on the website. FAB members always get together at the annual American Society for Bioethics and Humanities meeting, so if you plan to attend ASBH this October in Washington, DC, don't forget to attend. Membership for FAB will be changing next year. The modest dues, based on income level, will include a subscription to the new international journal. Consider joining FAB and helping it grow as an international presence in bioethics. Congratulations FAB!

House Passes Stem Cell Research Enhancement Act of 2007

2007-06-07T22:50:00.000-04:00

With a vote of 247/176/10, the House has voted to pass the Stem Cell Research Enhancement Act of 2007. The breakdown is about as you would expect, with the majority of the yes vote being Democratic (210), joined by 37 Republicans. The 160 Republicans voting no were joined by 16 Democrats, while 6 Democrats and 4 Republicans didn't vote.

Unfortunately, it will probably be a short-lived victory, as Democratic leaders have acknowledged that they do not have votes necessary to override Bush. For his part, Bush has said that recent stem cell news has reinforced his conviction that stem cell science can progress in ethical ways without using embryonic stem cells, and that he will veto the bill when it hits his desk.

-Kelly Hills

Art Caplan on MSNBC: Does Stem Cell Advance Provide an Ethical Out?

2007-06-06T17:10:00.001-04:00

The big science news of the day -- and maybe the year -- is that researchers have, in mice, managed to transform skin cells into what seem to look and act like pluripotent stem cells. (There's coverage everywhere, including: NYT, WP and Nature.) This development opens the possibility that maybe we can bypass many of the ethical questions that have surrounded research into human embryonic stem cells.

While this is exciting news, there's one phrase we shouldn't overlook: in mice. As Marius Wernig, one of the researchers from the Whitehead Institute involved with this research, was quoted in a press release today, "We are optimistic that this can one day work in human cells. We just need to find new strategies to reach that goal. For now, it would simply be premature and irresponsible to claim that we no longer need eggs for embryonic stem cell research."

On top of things as usual, Art Caplan notes over at MSNBC that doctors and funders shouldn't put all their embryos in one basket:

Just as Congress is about to vote on a bill that would require federal funding for embryonic stem cell research, something has me tempted to join the ranks of those loony tunes who see conspiracies lurking around every corner. The bill, the Stem Cell Research Enhancement Act of 2007, passed the Senate by a big margin in April. But just as the House prepares to vote later this week, news breaks that scientists have made progress in finding alternative ways to generate cells from other types of cells that can mimic the special powers of embryonic stem cells.

Convenient timing for those who oppose embryonic stem cell research, isn't it? It's certainly not the first time a scientific "breakthrough" has promised an alternative to embryonic stem cells just as funding issues were under debate. It has happened so often that even the wolf is no longer listening to the boy crying out, "there are alternatives!" Except this time, there is a big difference. There really has been a breakthrough.

Today's news about other ways to create embryonic-like stem cells, published in the journals Nature and Stem Cell, comes from mainstream, cutting-edge, world-class scientists. This is news worth listening to.

Rudi Jaenisch, a leading expert on cloning, and teams of scientists at the Whitehead Institute for Biomedical Research and the Massachusetts Institute of Technology were able to do some elegant engineering in which they genetically tweaked skin cells in mice to reprogram themselves and act like embryonic cells. They used artificial viruses to carry genetic information into a large batch of mice skin cells to turn on certain regulatory genes in the cells that normally only work in embryos. By injecting the reprogrammed cells with markers into early-stage mouse embryos, researchers were able to show that these reprogrammed cells turned into all manner of cells in the adult mice that grew from the embryos.

That is exactly what stem cell researchers are seeking - cells that could be manipulated to turn into other types of cells to repair diseased ones in our bodies.

This is very big news indeed. So why bother with a vote in Congress on funding human embryonic stem cell research? Shouldn't we simply put all of our federal funds into this type of reprogramming research?

End to ethical quandary? That would make President Bush and others who oppose the destruction of human embryos happy. And those who want to see progress made in trying to cure conditions such as diabetes, spinal cord injuries and Parkinson's disease should be pleased as well. Ethical dilemma solved!

Well, not so fast. I'm afraid that ditching embryos and jumping to fund alternatives is not the right response to this fascinating news about mouse cells.

This research is promising, but it's in mice. Many technical hurdles remain for translating this work to human cells. Some of the techniques used by the MIT scientists to isolate embryonic mouse cells are known not to work in human cells. Also, using cells that have been changed by means of viral vectors can pose health risks. This form of gene therapy has proven very difficult to do safely in human beings.

It is certainly true that the reprogramming option in both animal and human cells deserves funding, but so does human embryonic stem cell research. As much as critics of this field of research would like to have you believe that human embryos in dishes are people, that moral argument is not compelling.

Human embryos in dishes are not people or even potential people. They are, at best,possible potential people. Frozen embryos in infertility clinics face a fate of certain destruction anyway. The moral case against using them, or cloned embryos, which have almost zero chance of becoming people, is no less compelling because progress has been made in another area of research.

The existence of a new way to perhaps make embryonic-like stem cells is not enough to make frozen embryos and cloned embryos off-limits for American scientists or for research relying on federal funds.

Those in favor of human embryonic stem cell research, and that is the majority of Americans according most polls, including one done by CNN just last month, do not have to change their minds about the morality of such research even when another avenue for creating embryonic-like cells is found in mice.

Explore all possible avenues If you are an Iraq War veteran stuck in a wheelchair, if you are taking care of your father who is losing his ability to walk due to Parkinson's, if your child suffers from juvenile diabetes or if you need new skin as a result of terrible burns, you want scientists to pursue all the ethical options available for stem cell research. No one knows for sure whether any of them will work. But it is certain that if they are not all aggressively pursued with generous federal support, then the chance of any line of research ever turning into a therapy is greatly reduced.

The House should pass the Stem Cell Research Enhancement Act of 2007. President Bush will surely veto it, undoubtedly invoking this latest work on reprogramming adult cells as one of his reasons. Congress should then override that veto.

On the frontiers of science, good news about one promising route should not cause anyone to abandon other possible roads until someone actually gets to where they are trying to go - in this case, the goal is new cures for the sick, the dying and the severely disabled. Too many lives are riding on this to be fooled into taking the wrong detour.

mouse photo: Sam Ogden and Whitehead Institute

blather before the good stuff: Greg Dahlmann

The Blind May See With the Help of Embryonic Stem Cells

2007-06-06T17:07:00.000-04:00

A wealthy US donor has given British scientists $8 million to further research on using embryonic stem cells to treat macular degeneration reports Reuters. The motivation, according to the report, was frustration with the barriers to research in the U.S. This is probably a great strategy. If researchers are successful in helping the blind to see within 5 years (as they predict) and are able to make this a routine therapy within 10 years, it's going to be very difficult for the American public to resist. Having watched my grandfather live blind because of macular degeration for many many years, I wish the British researchers overwhelming success. I'm curious what conservative leaders are going to say to those who are blind about whether or not it's ethical to use the therapy once it's available. It's time to start addressing this question. I'm personally working with the Greek Orthodox Archdiocese to struggle with these questions. Are you other bioethicists out there doing your part?

-Andrea Kalfoglou

XDR-TB Blues

2007-06-04T16:10:00.000-04:00

Tuberculosis has a strange history. It is an ancient disease: Hippocrates long ago identified phthisis, the Greek term for tuberculosis, as the most widespread disease of his day, and over the centuries the disease has killed millions. But it is also curable. Albert Schatz, a graduate student at Rutgers, isolated the antibiotic Streptomycin in 1943, which has proved effective against tuberculosis in treatment programs around the world. Ideally, that should have been the end of TB's story as a major source of mortality. It has not turned out that way.

Effective treatment of TB requires taking the current drugs of choice (Rifampicin and Isoniazid) for a number of months, which patients are not always able to do, particularly in resource-poor countries, where drug supply chains, availability of health workers, funding of tuberculosis programs, and even the drugs themselves may be unreliable. Treatment interruption is largely responsible for the worldwide rise of multidrug resistant or MDR-TB, and of extensively drug resistant or XDR-TB. The upsurge of drug resistance is obviously a step backwards: it evokes the pre-1943 days, the days before drug treatment, the days of sending patients to sanatoria for fresh air, and in the last resort, submitting them to ghastly surgical interventions.

The newspapers, television and blogs have been filled this week with the story of Andrew Speaker, the lawyer from Georgia who took an international flight from Prague to Montreal after having learned from the Centers for Disease Control and Prevention that he is suffering from XDR-TB. Despite his apparent low infectiousness (having tested negative on skin tests, not being symptomatic), despite the lack of one known case of contracted active TB within an aircraft, and despite physicians not expressly forbidding him to fly, Mr. Speaker is largely being treated as a kind of bioterrorist, a fugitive, or a 'rascal', as this talking head (Dr. William Schaffner) on CNN video refers to him. On another CNN fear-inducing clip, one of Speaker's fellow passengers talks about her concerns about getting TB and possibly tranmitting it to family members by 'eating and drinking with them.' The CNN anchor does nothing to correct the misconception. Meanwhile, every expert and his dog is lining up to justify strict quarantine. On a brighter note, NPR gives a nuanced view of the case and MSNBC provides useful factoids to help prevent further stigmatization of TB patients.

Let's see how the other half -- in the southern hemisphere of our planet -- lives with XDR-TB. While Speaker was flown to a high-tech TB facility in Denver on private CDC jet, things look a bit different down in Brooklyn Chest Hospital in Cape Town, South Africa. There, XDR-TB patients can only get a hospital bed after many months, if at all, and MDR-TB patients fare no better. This means that there are many identified (and who knows how many unidentified) MDR and XDR-TB patients out and about in the Cape Town community. Whereas in America this would probably lead to mass hysteria, local health providers in South Africa take a pragmatic approach: since isolation is not feasible, these patients may have to be treated within community settings, and ways will have be devised to prevent them passing on infection to others.

"We need to now as a department and as a society come up with the best and most humane manner to care for untreatable infectious patients. Maybe put infection control measures in place at community level and do lots of health education so that patients can be with their families and loved ones," says Dr Marlene Poolman, Deputy Director for TB Control in the province.

Watching Andrew Speaker on Good Morning America is about as close as the vast majority of Americans are ever likely to get to an XDR-TB patient. Other countries can't radically separate healthy citizens from such 'rascals', because they don't have the resources. Still, Speaker is a victim just like any patient with drug-resistant TB: a victim of poorly funded and implemented primary TB programs around the world, the rich spawning ground of drug-resistant strains. Perhaps now that an affluent citizen of the North has been struck by a disease far more prevalent in the impoverished South, more attention will be paid to global TB control. Or maybe we will just speculate and sermonize about his rascally behavior.
-Stuart Rennie

Florida May Require and Ban Stem Cell Funding

2007-06-04T15:49:00.000-04:00

Yet another state getting into stem cells! Two mutually exclusive constitutional amendments, both of which might pass...

The Florida Supreme Court ruled that competing proposals to change the constitution to deal with the issue can go before the electorate in 2008 if the groups pushing the proposals get enough signatures to get them on the ballot. The court said unanimously that the proposed ballot language that voters would be asked to decide on in both cases is clear enough, and only deals with one subject, as required by law. In both cases, the justices said the ballot proposals are clear enough to allow voters to understand the likely consequences of what they're voting on.

One amendment, sponsored by Floridians for Stem Cell Research and Cures, Inc., would require the state Legislature to appropriate $20 million a year for 10 years on grants for embryonic stem cell research. There would be a prohibition on using the embryos for reproductive cloning, that is, to make a baby. And they could only be used if the donors had consented and hadn't been paid to provide the embryos, other than to compensate them for what it costs to actually donate the cells, under the proposal.

The grants would have to go to nonprofit academic and other research institutions in Florida and the winners of the grant money would be chosen based on a peer review process. All of that is included in the proposed amendment.

The amendment to ban state spending on embryonic stem cell research, sponsored by Citizens for Science and Ethics, Inc., is so simple and short that no one argued against it when the Supreme Court held arguments on whether the ballot language was fair. The proposed change simply reads: "No revenue of the state shall be spent on experimentation that involves the destruction of a live human embryo."

Although it's unlikely, there is the possibility that voters could somehow pass both, thus requiring the state to spend money on the studies while simultaneously preventing it from spending money on such studies.

Nothing in the constitution or the law addresses what would happen in such a case, meaning it would have to be decided in the courts. "There is no rule in the constitution with respect to that scenario," said Mark Herron, who practices elections law in Florida.

Ya gotta love it..
-Jim Fossett

The Devil on the Doctor's Shoulder

2007-06-04T15:31:00.000-04:00

We have written before about Stanford banning even small gifts from pharma reps, the influence gifts have, and the JAMA article and recommendations on inappropriate gifts.

Now the LA Times has a piece by a family physician in Seattle talking about accepting the lunches and baseball tickets and other gifts from the drug reps. Interestingly, it's not necessarily a flattering piece, and highlights many of the issues that have been raised about the bias that these gifts create. But it also offers if not a sympathetic explanation of why a doctor would accept the gifts, an explanation that I'm sure many of us can relate to, even if we don't approve.
-Kelly Hills [hat tip to Birgitta Sujdak-Mackiewicz!]

Dutch Kidney Donor Reality Show a Hoax

2007-06-01T17:15:00.000-04:00

April 1st seems to be few months late this year; the Dutch reality television show that some of us got opinionated on, The Big Donor, aired today, and in the last moments of the telecast, was revealed to be a hoax. Straight from MSNBC:

In the last minutes of the program, [“Lisa,” the 37-year-old woman who had been said to have been suffering from a brain tumor] was revealed as a healthy actress and program makers stunned viewers by saying ”The Big Donorshow” was a hoax.

The contestants were also part of the deception, although all three are genuine kidney patients.

“Their life is bitter reality,” the presenter said after revealing the deception, just at the moment at which Lisa was to have made her choice.

So now, of course, BNN is getting heaps of praise for drawing attention to the plight of those waiting for transplants, and the shortage of organs that exist. The Dutch education minister has said it was a fantastic stunt, and an excellent way to draw attention to the shortage in donated organs.

Er - really? I'm not sure heated water cooler debate over whether or not something is tasteless and going too far is really the best way to draw attention to an issue that needs addressing. Taking the example of The Big Donor, which apparently ran appeals for viewers to donate organs through-out its broadcast: does creating an emotional or gut-wrenching scenario, then revealing it to be a hoax at the end, really result in people saying "oh, well, I'll still donate", or do you end up with a more negative association? Feeling bad, feeling generous, and then feeling taken.

I don't know. The makers of the program say they hope that people's outrage over the show, and the hoax, will turn into outrage at the shortage of organs. Whether or not it will simply remains to be see. But they were right on one count - the show has certainly got people talking.
-Kelly Hills

Assisted Suicide Debate Has Passed Dr. Death By

2007-06-01T13:21:00.000-04:00

Art Caplan writes at MSNBC:

The last time I saw Jack Kevorkian was April 23, 1994, in a courtroom in Pontiac, Michigan.

Oakland County prosecutors had charged him in the death of 54-year-old Janet Adkins of Portland, Ore. The charges were assisting in a suicide, murder and delivering a controlled substance for administering drugs without a license. I was there to testify that what he had done to Adkins - providing her with his "suicide machine," which she used in the back of his 1968 VW van parked in a dark campsite to end her life - was both immoral and a gross violation of medical ethics.

Kevorkian, who became known in the press as "Dr. Death," was found not guilty. A few years later he was asked by Thomas Youk, a 52-year-old who had trouble breathing and swallowing due to advancing Lou Gehrig's disease, for help in dying. Kevorkian injected him with a lethal dose of potassium chloride while videotaping the ghastly proceedings. He sent the tape to "60 Minutes," which aired it. This gave prosecutors incontrovertible evidence that Jack had gone from assisting in suicides to personally killing people. He was sentenced to 10 to 25 years for murder. After serving just over eight years, Jack is back.

I believed Kevorkian was a very dangerous killer then, and I still believe it now. He helped dozens of depressed and disabled people die without trying very hard to convince them to live.

That day in the Pontiac courtroom, he stared and scowled as I said that it was unethical for a doctor to help kill someone they barely knew, who was not terminally ill and who was still enjoying a good quality of life. Adkins had been told she had Alzheimer's but it was not clear how many months or years of quality life she had left when she used Jack's jury-rigged death machine to infuse a lethal dose of drugs into her bloodstream.

All this matters because now that Kevorkian is out of jail, he has said he plans to reinsert himself as a vocal participant in the ongoing debate in America over assisted suicide.

No doubt he will get an audience. There are plenty of Americans who still, incredibly, view him as a hero. And the media loves him, too, knowing the audience-grabbing power of an unrepentant killer.

To be fair, there are those who admire Kevorkian as the lightening rod who changed how Americans view both the care of the dying and assisted suicide. After all, didn't he bring these issues center stage in courtrooms, state legislatures and the media? No one else did more than he did to promote assisted suicide.

Fanatic, not leader
But I do not see him this way. He was more of a fanatic than the founder of a movement. A zealot who could rally public opinion but could not shape it. You see, Kevorkian believes in suicide on demand. He thinks that doctors have an obligation to help anyone who decides that their life is not worth living, whatever their reason. Some of the 130 people he helped die had no terminal illnesses. Some were clearly depressed. Others had histories of mental illness. Only a few got any counseling. Kevorkian helped them all to die.

Kevorkian's problem was and is that he likes death way too much. The enthusiasm he brought to his cause was always deeply troubling. No doubts, no ambivalence, ever seemed to cross his mind as he dispatched his victims. The fact that he helped some to die within hours of meeting them, the fact that he would turn a disabled man's death into a national spectacle by giving a tape of his murder to "60 Minutes" - never mind that they used it! - and the fact that he never seemed to try particularly hard to talk those who came to him out of their decision to die made him morally suspect then and hardly worth hearing from now.

There are other reasons besides his fanaticism and moral obtuseness that we don't we need to hear anymore from Jack Kevorkian.

When Kevorkian went to jail, polls showed Americans were not sure what to think about legalizing assisted suicide. They still are not. According to an Associated Press poll out this week, 48 percent of people said assisted suicide should be legal; 44 percent said it should be illegal.

Debate has passed him by
But the debate has grown more sophisticated than it was when Kevorkian was offing people on TV.

The citizens of Oregon legalized a form of physician-assisted suicide in 1997. Proponents said the biggest obstacle they faced was Kevorkian and what he had done. They convinced people to vote for legalization despite Kevorkian, not because of him.

Critics who knew of Kevorkian's seeming disinterest in those he helped to die worried about abuse of the vulnerable and dying in Oregon. However, the passage of the carefully crafted Oregon law seems to have accomplished the goal of giving the terminally ill the option of controlling their death without encouraging them to die.

What is so interesting is that almost no one who asks for a lethal dose of medication actually does end their life. The Oregon law requires a determination of terminal illness by two doctors, counseling and a waiting period before a doctor can assist in dying.

It was the Oregon law, not the actions of Jack Kevorkian, that shook the complacency of the medical and nursing professions in that state and across the country. And it was the rise of palliative care and hospice as an alternative to rather than as a result of Kevorkian that has made dying a less horrifying prospect all over the United States.

We are far from ensuring a dignified and pain-free death for every American. The Terri Schiavo case was a stark reminder that your right to control how and where you die is not beyond the meddlesome grasp of pandering politicians and religious harpies. But we know now what we did not know when Kevorkian went on his assisted-suicide rampage - that we have a duty to make dying bearable and to ensure that each person gets the support, technology and pain control they wish.

The fact that Jack is back is no cause for celebration. The world of death and dying has, thankfully, passed him by. There is still more to talk about but not much useful that Jack Kevorkian can possibly say.

Sperm Donors Undervalued

2007-06-01T13:05:00.000-04:00

Be on the look out for an upcoming article in the June issue of the American Sociological Review by US Sociologist Rene Almeling. Her comparative study between egg donors and sperm donors reveals that sperm donors are undervalued fiscally, and are also treated with less appreciation, and are less prepared for the emotional consequences of being genetic donors. Almeling speculates that these inequalitites are perpetuated by gender-stereotyped social attitudes towards motherhood and fatherhood. Egg donors are made to feel like they are doing something very special for the recipient couple, while sperm donors are treated as though they are getting paid for something they would do anyway. Hopefully Almeling's research will lead to better informed consent for sperm donors to help them consider the long-term implications of participating in a collaborative reproductive process.

-Andrea Kalfoglou

Another State Joins the Stem Cell Business

2007-05-31T21:47:00.001-04:00

Jim Fossett brought to my attention that yet another state, Maryland, is getting into the stem cell business.

The Bioethics Quilt Project

2007-05-31T20:26:00.000-04:00

Karama Neal sent along some great links about the Bioethics Quilt Project by Muhjah Shakir, assistant professor of occupational therapy and senior scholar at the National Center for Bioethics in Research and Health Care at Tuskegee University. Professor Shakir has been working with the female partners of the men in the U.S. Public Health Service Syphilis Study (Tuskegee) to create a quilt and find out the impact the study had on contemporary women in Tuskegee and Macon County, Alabama.

“I had long since wanted to use quilting as a method to engage a group around,” she said. “The community had a long history of quilting, so the quilt project was a great way to engage the community and learn of the impact of the syphilis study.”

This project involves women between the ages of 55 and 96 meeting twice a week to tell their life stories, create a quilt and journal. Each creates a square to depict how they are feeling. This is designed to develop a capacity for reflection in the women.

Shakir said the squares vary in their symbolism and meaning. “Each square tells a particular story from the woman’s own perspective,” she said. “The quilting has become a community narrative of Tuskegee.”

You can also hear both Professor Shakir and Harriet Washington, the author of Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present discuss the history of experimentation on black Americans, as well as how the quilt project heals old wounds via art.
-Kelly Hills [with many thanks to Karama]

HPV Vaccine Culture Wars

2007-05-31T16:51:00.000-04:00

For a time, Georgia was poised to become the latest state to require preteen girls to be vaccinated against a virus that causes cervical cancer. A powerful state Republican lawmaker proposed making the vaccine mandatory for girls entering sixth grade, and the governor included $4.3 million in his budget to make it available to some 13,000 girls whose family's insurance policies wouldn't cover it. But state lawmakers nixed the plans after aggressive lobbying by religious conservatives, who argued that vaccinating young girls could promote promiscuity. The human papillomavirus that causes cervical cancer is transmitted through sexual contact.

Similar proposals were introduced in 23 other states and the District of Columbia, but only Virginia has signed such a mandate into law. Proposals in many states died or were watered down to only provide parents with educational materials instead of requiring the vaccine. In Texas, Gov. Rick Perry signed an executive order requiring vaccinations for sixth-grade girls, but the Legislature then passed a bill blocking the order.

Over the past several months, a vaccine that once was hailed as a breakthrough to prevent cancer deaths has become embroiled in some of the nation's most politically charged issues: teen sex, parental control, state mandates, a backlash against vaccines and a suspicion of drug companies.

The politics on HPV are getting interesting— one set of Republicans is getting money from Merck to push a mandate, while another set is worried about encouraging “promiscuity”.
-Jim Fossett

What Counts as Family?

2007-05-31T14:13:00.000-04:00

Several people have pointed out an email sent out by Stephen Bennett of Concerned Women for America, which clearly says that what matters in parent/child relationships is not actually the relationship, but the biology involved. Talking about Mary Cheney, her partner Heather Poe, and their child, Samuel David, Bennett says

Fact is Mary Cheney, the Vice President's daughter - in one way or another - received a male's sperm. She is the biological mother, parent number one, and some man, somewhere out there, is Samuel David's real biological father, parent number two.

Heather Poe is Mary Cheney's live-in lesbian lover. She may act like a parent, she may treat the baby as a parent, she may love this baby with all of her heart, but in this reality we all live in, Heather Poe is NOT the baby's real parent. She has NO biological connection to the child whatsoever. Some man, the baby's real Daddy, is the child's other REAL parent.

Early on in the emailed press release, Concerned Women for America attempt to separate out a very specific set of adopted children and parents: those who are adopted by the spouse of a second marriage, implying that there is still at least one biological connection present. But what about kids completely adopted into a family, through either closed or open adoptions in the United States, or overseas adoptions? How about kids who are created through assisted reproductive technologies, who might have the genetic material of one woman, carried by a second, and raised by a third? What about families where one parent cannot contribute genetic material? Are they suddenly no longer a parent because they are not in this special category of marrying into an already established family where something has "gone wrong"?

There is more than the biological identity of a child. There's the social identity - the years upon years of familial habits that are not genetically encoded into us, but become part of us because it's part of our experience. I don't expect science to ever find a segment of DNA that is responsible for the fact that my grandmother and mother both placed potholders over their purses whenever they turned the oven on, so they would not leave the house without turning the oven off. Yet it's there, and if I ever get back into the habit of cooking, it's probably something I'll do without thinking about it - just like my sister does.

A few years back, Glenn McGee wrote that

one profound miracle of the mapping of the genome is that it is now more clear than ever that we share so much of our genes with every human being that to select a child on the basis of a few inherited susceptibilities or traits is to overestimate the power of individual genes to make us human, to make families, or to link us together.

Science has allowed us to change the rules of biology, and DNA is becoming a tool, not a definition. Likewise, family is a constantly changing concept, fluid with both social and technological advances. What matters is not the genetic code tying us together, but the social construct that allows us to feel tied together at all.
-Kelly Hills

California's Supreme Court Clears Way for CIRM

2007-05-31T01:10:00.000-04:00

The California Supreme Court cleared the way for the state's stem cell research agency to distribute billions of dollars in grants Wednesday when it turned back a last-ditch legal challenge by abortion foes and other critics.

The state's high court declined to review a lower court ruling that upheld the constitutionality of the California Institute for Regenerative Medicine. The litigation had prevented the agency from doling out $3 billion in research grants.

"Today's action by the California Supreme Court is a victory for our state because potentially life-saving science can continue without a shadow of legal doubt," said Gov. Arnold Schwarzenegger.

The stem cell dollars are now flowing. They've already awarded over $100 million from the governor's loan, and the rest will soon be available. Of course, that means tons of work needing to be done - stat - to meet the regulations!
-David Magnus

Stem Cells - Should It Be the Feds or Is It Still the States?

2007-05-31T01:07:00.000-04:00

Jim Fossett and Sam Berger of the Center for American Progress debate the future of national stem cell policy at the Hastings Center blog. Sam's defense of keeping the focus on the feds is here; Jim's rejoinder that the action is likely to remain with the states is here.

China's Food & Drug Chief Sentenced To Death

2007-05-31T00:59:00.000-04:00

China's former top drug regulator was sentenced to death Tuesday in an unusually harsh punishment for taking bribes to approve substandard medicines, including an antibiotic blamed for at least 10 deaths. The sentence was unusually heavy even for China, which is believed to carry out more court-ordered executions than all other nations combined - and likely indicates the leadership's determination to deal with the recent scares involving unsafe food and drugs.

Well this is one way to insure vigorous oversight of the pharmaceutical and device industries. Certainly would silence the critics who worry about FDA being in cahoots with the industry it regulates!

-Art Caplan

You Don’t “Beat” Cancer in Mere Months

2007-05-31T00:52:00.000-04:00

The only claim more medically ridiculous than a Lindsay Lohan or a Britney Spears announcing defeat over substance abuse after a month-long stint in rehab is the claim of a Farrah Fawcett, Sheryl Crow, or Melissa Etheridge that she has “beaten” cancer after a few months of treatment. “Three months after being declared cancer-free, she copes with the unexpected return of her illness”, rang out the June 4 People magazine, referring to the unfortunate former Charlie’s Angel, Fawcett. I doubt any oncologist would have made that statement.

Five-Year Survival
Even the 5-year survival statistic used by the National Cancer Institute that seems to have eluded the cancer celebrities ignores the micrometastases that can persist, no matter how targeted or toxic the treatment or how dramatically symptoms have abated. My mother passed the magical 5-year mark, yet her breast cancer returned at year 17. I had thyroid cancer in 1993, and I know it isn’t and never really will be entirely gone. Even people whose leukemia appears to have vanished following treatment with Gleevec – the closest thing to a “miracle” drug I’ve ever heard of – can still have, at the RNA level, traces of something not quite right. They can feel fine, their blood can look normal, even their telltale mixed up chromosomes can be undetectable, yet the errant oncoprotein that lies behind the disease is, sometimes, still there. That’s why when people go off Gleevec, such as to become pregnant, a supposedly vanquished cancer can return.

Five-year survival rates assess the deadliness of a cancer on a population level. By “survival”, the definition means anyone still alive, whether or not symptoms and/or treatment are ongoing. Such a population statistic should not be applied to an individual case. Yet I just received a phone call from a Red Cross representative seeking a donation. When I declined, explaining my cancer history, to my utter astonishment she asked me if it had been more than 5 years since my diagnosis. Not wishing to launch into a spirited discussion of the concept of micrometastases, I politely declined, explaining that I would sooner donate bovine blood than mine, in which a cancer cell or two is bound to lurk.

With thoughts of the Red Cross and poor Farrah in my mind, I checked out the Red Cross website. Lo and behold, as of their May 24 update of the eligibility guidelines, besides the obvious blood-borne cancers, “Other types of cancer are acceptable, if the cancer has been treated successfully, and it has been at least 5 years since treatment was completed and there has been no cancer recurrence in this time.”

Enter Gene Expression Profiling
Whoa! Hasn’t anyone at the Red Cross heard about MammaPrint, the test that the FDA approved earlier this year (Buyse 2006)? It’s the first test that detects a gene expression signature – rather than mutations – that is correlated with risk of recurrence 5 to 10 years from diagnosis! It’s based on 70 genes and has been marketed in Amsterdam, where it was developed, since 2005.

Do the math: If MammaPrint predicts increased risk of cancer resurfacing after 5 years, why is the Red Cross accepting blood from people who’ve had cancer just because they have passed the 5-year population-based mark? I understand that individual donation decisions are made at the collection sites based on a person’s detailed family history, but if there’s still doubt – and in science there always is – why risk letting cancer cells get into the blood supply?

The idea that tumors can return isn’t new. In 1889 English surgeon Stephen Paget meticulously traced the spread of disease from the breast to secondary organs in 735 women, calling the original tumor the “seed” and the site of spread the “soil” (Paget 1889, Fidler 2003). The new twist today, akin to a crystal ball, is the gene expression profiling that is the basis of MammaPrint – the first genetic peek into Paget’s timeless seed and soil hypothesis. Still in development are a 5-gene signature that predicts survival in non-small-cell lung cancer (Chen 2007), and another that foretells whether breast cancer will spread to the lung or bone (Gupta 2007).

Many such prognostic tests are in the works. And so cancer diagnosis circa 2015, or even sooner, will come with predictions not only of where and when the disease is most likely to spread, but also which drugs will be most effective, with the fewest side effects. The ability of gene expression profiling to highlight molecular derangements not apparent at the cellular level will take cancer diagnosis and prognosis to a new level.

But back to practicality and stars who miraculously beat cancer in weeks. I prefer Elizabeth Edwards’ stoic recognition of her cancer as a chronic, treatable condition than the giddily premature proclamations of having escaped the oncobullet.

It takes time to come to terms with cancer. You learn to live with the vestige of the disease, for it may remain, even if you are in perfect health. Perhaps most micrometastases never translate into clinical recurrences. We outlive our cancers. I read somewhere that having cancer divides time, so that your remaining days, whether they are few or many, are different. It’s trite, but oh so true.

I’m not trying to throw cold water on all the people who have fought so bravely and endured the indescribable fear of knowing that cells are dividing out-of-control in the body. I had only a tiny taste of that terror. But what bothers me about the celebrities who claim to have “beaten” cancer after a few months of treatment, besides raising false hopes, is the implication or outright claim -- often the fault of the media -- that they “did everything right”.

What does that say about the rest of us, like me, who avoided tobacco and sunburns, stuffed ourselves with broccoli, exercised like crazy, and got cancer anyway? Alas, for many of us, cancer just happens. It is a consequence of somatic mutations, which are a consequence of occasionally faulty DNA replication and repair.

So Farrah, Sheryl, and Melissa, I love you all, I wish you well, but please be careful not to proclaim your triumph over the devil that is cancer after only a few months. Unfortunately, millions of us know better.

- Contributing Editor Ricki Lewis

Buyse, M., et al. 2006. Validation and clinical utility of a 70-gene prognostic signature for women with node-negative breast cancer. Journal of the National Cancer Institute 98:1183-1192.

Chen, H-Y, et al. January 4, 2007. A five-gene signature and clinical outcome in non-small-cell lung cancer. The New England Journal of Medicine 356(1):11-20.

Fidler, I.J. 2003. The pathogenesis of cancer metastasis: the ‘seed and soil’ hypothesis revisited. Nature Reviews Cancer 3(6):453-458.

Gupta, G.P., D. X. Nguyen, A.C. Chiang, P.D. Bos, J.Y. Kim, C. Nadal, R.R. Gomis, K. Manova-Todorova, and J. Massague. April 12, 2007. Mediators of vascular remodeling co-opted for sequential steps in lung metastasis. Nature 446:765-770.

Paget, S. 1889. The distribution of secondary growth in cancer of the breast. The Lancet 133(3421):571-573.

Tasteless and Unethical? Sounds Like Reality TV to Me!

2007-05-30T12:14:00.000-04:00

In a display of truly questionable ethics that I would only expect from American reality television, a Dutch reality TV show is set to premier - one that has three families competing to win a dying woman's kidney. The show producers admit that there's no guarantee that the families will go through this ordeal and receive anything, including a winning kidney - although they hope to skirt Dutch transplant laws by transplanting the kidney while the donor is still alive.

The producers echo the same altruistic motivations any producer of any show that exploits a failing in the medical system (see any number of non-quite-reality-TV airing on American stations right now), that they're doing it to draw attention to the shortage of organs available for transplant, and that their show isn't as bad as the reality of the number of people who die every year waiting for transplant.

No, their show is only show bad that three families will compete, beg, plead and do whatever they can to win the sympathy of the voting public and sway the dying donor, regardless of the fact that Dutch law does not allow post-mortem directed donation, that their family is the most deserving.

A few years ago, I wrote about an ABC show by the name of Miracle Workers, and what I said that that show is equally applicable to BNN's Big Donor Show: when medicine begins competing with television to provide medical services to people in need, when network executives are masquerading as fairy godmothers, we need to ask ourselves: do we want medical care to continue becoming a theatre of entertainment, something we should be lucky to receive? Are you pretty enough, sexy enough, compelling enough to be picked out of a flood of applicants to receive the chance of care? Will your story win the hearts, minds, and most importantly, votes of the viewing public?

-Kelly Hills, with thanks to everyone who sent copies of the story to us!
[It is the ultimate in a TV reality show--organ donation by the dying! American Idol take a back seat to Dying Dutch Decider! -Art Caplan]

New Abortion Bill To Require Fetal Consent

2007-05-28T22:15:00.000-04:00

New Abortion Bill To Require Fetal Consent

Selective Reduction of a Multiple Pregnancy

2007-05-28T21:37:00.000-04:00

Imagine experiencing infertility, and then finding out that you are pregnant -- with triplets! Doctors then recommend that you reduce the pregnancy to twins because of the risk of trying to carry triplets for both mom and the babies. You weigh the potential of losing all three babies to a miscarriage or giving birth to three premature infants vs. intentionally ending the life of one. How do you choose which one?

There are no statistics to know how many women face this "Sophie's Choice" each year; however, the use of assisted reproductive technology (ART), particularly fertility drugs, has increased the number of women faced with this decision. Liza Mundy explores this issue with great sensitivity in the Washington Post Magazine this week and follows up with an on-line chat on the topic. Mark Evans is to be commended for his willingness to discuss this sensitive topic with Mundy.

What Mundy doesn't discuss is why these multiple pregnancies exist in the first place. Yes, she mentions that they are the product of ART, but she doesn't talk about the controversy that exists in the ART community over practicing fertility medicine responsibly. Howard Jones and other outspoken infertility treatment providers have advocated for guidelines to limit the number of embryos transferred to a woman's uterus during IVF treatment. ASRM has recently adopted guidelines, but they still allow for more than two embryos to be transferred. Other countries have taken to fining ART clinics that produce too many multiple births. We also need to work on educating IVF and fertility drug patients that multiples are not a blessing. It's high time that every ART provider lose the cavalier attitude (that I've personally heard) that selective reduction as a simply way to deal with a multiple pregnancy. The risks of multiple pregnancy must be clearly explained to women as part of the consent process for both IVF and the use of fertility drugs. Responsible providers will follow the ASRM guidelines for the number of embryos to transfer and carefully monitor cycles using fertility drugs, canceling those cycles when too many ovarian follicles are developing.

A good follow-up study on the effects of selective reduction on women and families is also needed. It might help infertile couples who think they want a multiple pregnancy understand what responsible providers are trying to avoid.
-Andrea Kalfoglou

Is 2 Hours and 10 Tries Humane?

2007-05-27T00:34:00.000-04:00

The AP is reporting that it took 2 hours and 10 jabs before Ohio prison staff were able to insert shunts to deliver a lethal cocktail to inmate Christopher Newton. Botched executions have become almost common now, with multiple states questioning what the most humane method of execution is, and in at least nine states completely suspending lethal injections while the procedure is re-evaluated.

But this case takes a bizarre turn when you start reading the details. Newton laughed and joked with the prison medical staff while they tried to insert the needles, and he was even allowed a bathroom break during the proceedings. But the truly bizarre comes from just how helpful Newton was in his own case, insisting that the only way he would cooperate with investigators is if they sought the death penalty.

Bizarre aspects to the case aside, Ohio is one of the states that had a botched execution last year. Following the extended execution of Joseph Clark, which took close to 90 minutes due to scarred veins from drug use, the state announced it would make several key changes to how it handled lethal injections, designed to prevent any extended execution process in the future. That these changes were in place for Newton's execution continues to raise the question of whether or not lethal injection can ever be the swift and painless death it was originally advertised as being.
-Kelly Hills

FDA Leaves Blood Donation Ban In Place

2007-05-24T12:39:00.000-04:00

Despite the criticisms by the Red Cross, America's Blood Centers, the international blood association AABB, and other blood advocate groups, despite the increasing sophistication of tests to detect HIV, despite the appearance of discriminatory practices, despite thoughtful editorials by respected bioethicists, the FDA has reiterated its long-standing ban on gay men donating blood.
-Kelly Hills

Flying East? Don't Forget Your Viagra

2007-05-22T21:45:00.000-04:00

Good news for frequent flyers heading east: Viagra appears to offset jetlag. Sadly, it seems to have no effect - at least on jetlag - for those flying west.

After reading the original paper this morning, with several cups of coffee helping to decode the biology, I am left wondering both how Pfizer will pursue this to their best advantage (the risque advertising possibilities seem almost limitless), and less cynically, if it will even work for women at all. As the Women's Bioethics Blog notes, Viagra does work as an arousal aid for at least some women, so in theory it should help some women with eastbound jetlag. But per the norm in scientific studies, the only mice used were male. Followup study, anyone?
-Kelly Hills
[edited at 1pm EST, May 23rd]

Backseat prescriber? Let us open the door for you.

2007-05-22T16:58:00.000-04:00

It's no secret that drug companies have been using the prescription records of physicians in order to better "educate" doctors. As you might expect, this backseat prescribing has rubbed a lot of physicians the wrong way. And as the Washington Post reported this week, the frustration has led to proposed legislation in a handful of states. New Hampshire even passed a law prohibiting the practice, but that law was declared unconstitutional on commercial speech grounds by a U.S. District Court last month.

Nevertheless, a recently created organization called the National Physicians Alliance is continuing the fight to close off pharma's access to prescription records. And how about the AMA? From that WaPo piece:

The American Medical Association, a larger and far more established group, makes millions of dollars each year by helping data-mining companies link prescribing data to individual physicians. It does so by licensing access to the AMA Physician Masterfile, a database containing names, birth dates, educational background, specialties and addresses for more than 800,000 doctors.

After complaints from some members, the AMA last year began allowing doctors to "opt out" and shield their individual prescribing information from salespeople, although drug companies can still get it. So far, 7,476 doctors have opted out, AMA officials said.

"That gives the physician the choice," said Jeremy A. Lazarus, a Denver psychiatrist and high-ranking AMA official.

-Greg Dahlmann

Art Caplan on MSNBC: New Machine Keeps 'Heart in a Box' Beating

2007-05-22T08:11:00.000-04:00

Over on MSNBC, Art Caplan continues to talk about the tell tale heart-in-a-box machine, noting that although macabre, this advance could bring longer life to donated organs:

One of the greatest short stories ever written is Edgar Allan Poe's "The Tell-Tale Heart." In this 1843 classic, the murderer of an old man is tortured by the sound of his victim's heart continuing to beat, a sound which no one else seems to hear. The relentless beating eventually leads the murderer to confess. That creepy tale certainly kept a 10-year-old Arthur Caplan awake at night.

Now there's a machine that can do what Poe imagined - preserve a beating heart in isolation. And while this might seem to be the yuckiest idea to come down the pike in a long time, it really represents a bold and fascinating advance in trying to save the lives of people with failing hearts.

The "heart in a box" machine, known as the Organ Care System, is made by TransMedics Inc., of Andover, Mass. Doctors in Pittsburgh recently announced that they used the machine to keep hearts beating for hours on their own after being removed from cadavers. Three patients, a 47-year-old man and two women in their 50s, received these hearts and all seem to be doing very well.

The machine will be tested further in the coming year at five transplant centers in the U.S. - the University of Pittsburgh Medical Center, Brigham and Women's Hospital in Boston, UCLA Medical Center in Los Angeles, the University of Chicago Hospitals' Cardiac Center and the Cleveland Clinic. The researchers want to be sure that hearts transplanted out of the box really work as well as those preserved by current methods.

Until now, when a heart was donated upon someone's death, the organ was saturated with preservative fluid and stashed in a thermos-type cooler packed with ice. We've all seen the images of people in white coats running to or from airplanes, cooler in hand, racing against the clock to get an organ to someone in desperate need. Hearts are very fragile and can sometimes be damaged by the current standard method of preserving them on ice.

Inside the new transportable box, a machine pumps blood donor through the heart without requiring cold temperatures or artificial preservative fluids. The company says a heart kept functioning this way can be preserved for at least 24 hours.

If this machine succeeds in keeping hearts beating safely in more trials, then instead of the current six-hour limit that existing preservation techniques allow, hearts could be moved anywhere in the country to where someone needs one without worrying about how long the process is taking. And some hearts that might not be strong enough to last using current techniques might be able to be salvaged and transplanted using this new technology.

There is no denying that, as Poe understood, the image of the beating heart outside the body is macabre. That is until you imagine a family grieving over the loss of a loved one because there was no heart to transplant. That truly nightmarish image is the one this new machine may help prevent.

Coming Soon to a TV Near You: PharmaTV!

2007-05-21T07:23:00.000-04:00

If you're European and find yourself jealous of the many options pharma companies have for advertising in the United States, you will be happy to learn that

four of the world's biggest pharmaceutical companies are proposing to launch a television station to tell the public about their drugs, amid strenuous lobbying across Europe by the industry for an end to restrictions aimed at protecting patients. Pharma TV would be a dedicated interactive digital channel funded by the industry with health news and features but, at its heart, would be detailed information from drug companies about their medicines.

Johnson & Johnson, Pfizer, Novartis and Procter & Gamble, are behind the pilot, which they are offering to the European commission as a way to give patients more information. The industry has been lobbying in Europe to be allowed direct access to patients. It argues that lifting restrictions would help its competitiveness and has hinted that companies may relocate to the US, where they can advertise to patients who then demand drugs from their doctors. Profits have soared there as a result.

Of course, pesky things like the detrimental effects to patients and the inaccurate information provided by pharmaceutical industry advertisements, playing down the risks and emphasizing the rewards, are all just part of the fun when proposing a self-regulating, on demand channel of 24/7 advertainment.
-Kelly Hills

Is There a Drug For Broken Credulity?

2007-05-18T22:53:00.000-04:00

Did April Fool's come late this year? What other reason could there be for the op ed page of the Boston Globe to publish this patently absurd article on the merits of pharmaceutical companies providing education about drugs to physicians. Look, I am willing to concede that worries about conflicts of interest have in many ways gotten a bit out of hand but, touting big Pharma as an objective source of information on drug use for docs strains credulity well beyond the breaking point. This op ed made me laugh so hard it gave me headache. I wonder which bubbly, attentive, cute, exquisitely coifed and attired one-year-ago-cheerleader-music-major-now drug rep I should have over to my house to lecture me on the physiology of blood flow and nerve structure in the brain as well as the biochemistry of the available nostrums to fix them?
-Art Caplan

A Tell Tale Heart?

2007-05-18T11:06:00.000-04:00

University of Pittsburgh Medical Center surgeons successfully performed the first beating heart transplant in the United States, the health system announced today.

The surgery was done April 8 on Richard Jackson, 47, of Portage, Cambria County, who had congestive heart failure. He was released from the hospital on April 30. The donated heart, which came from a 46-year-old man, was kept beating outside the body for almost 3 hours by a machine that is being tested in clinical trials.

Where is Edgar Allen Poe when we need him? Is this the beating of the 'hideous heart'? Actually I dont think so since it will help preserve fragile hearts and save lives. But if you wanted a candidate of the year to pin the needle on the yuk factor scale this is my choice.

- Art Caplan

Robots Are a Soldier's Best Friend

2007-05-15T18:34:00.000-04:00

While we have written about a robot code of ethics, the Washington Post has an incredibly touching and illuminating story about soldiers in Iraq and Afghanistan ~~interacting~~ bonding with their robots:

Humans have long displayed an uncanny ability to make emotional connections with their manufactured helpmates. Car owners for generations have named their vehicles. In "Cast Away," Tom Hanks risks his life to save a volleyball named Wilson, who has become his best friend and confidant. Now that our creations display elements of intelligence, however, the bonds humans forge with their machines are even more impressive. Especially when humans credit their bots with saving their lives.

Ted Bogosh recalls one day in Camp Victory, near Baghdad, when he was a Marine master sergeant running the robot repair shop.

That day, an explosive ordnance disposal technician walked through his door. The EODs, as they are known, are the people who -- with their robots -- are charged with disabling Iraq's most virulent scourge, the roadside improvised explosive device. In this fellow's hands was a small box. It contained the remains of his robot. He had named it Scooby-Doo.

"There wasn't a whole lot left of Scooby," Bogosh says. The biggest piece was its 3-by-3-by-4-inch head, containing its video camera. On the side had been painted "its battle list, its track record. This had been a really great robot."

The veteran explosives technician looming over Bogosh was visibly upset. He insisted he did not want a new robot. He wanted Scooby-Doo back.

It's a heartwarming story, although it's actually the introduction, which talks about an Army colonel stopping a test on a centipede-style mine detonation robot because it was "inhumane", that makes me wonder if the entire point of a robot code of ethics misses something intrinsic in our interaction with robots: how we, ourselves, bond to the robot, regardless of just how sentient that robot is.

-Kelly Hills [with a tip of the hat to Art Caplan]

Egg Freezing No Longer Experimental?

2007-05-14T15:47:00.000-04:00

Oprah once said she wishes she had frozen her oocytes to keep open the possibility of having a child later in life. Now, for $9,000 to $15,000 per attempt, plus $350 to $500 a year to store the eggs, women in their early 30's can do just that. While scientists developing egg freezing may say they are doing it for cancer patients who may lose their fertility as a result of radiation treatment, they all know the real market for this technology is women in graduate school who want a fertility insurance policy. The market potential motivated Christy Jones, a high-powered Harvard MBA, to start an egg freezing business she calls Extend Fertility Inc. While there are no official figures on how many clinics offer egg-freezing or how many women are using it, a cancer survivor advocacy group, Fertile Hope, recently surveyed 430 clinics and found that 138 were providing the service, up from 58 three years earlier. The clinics reported having done more than 500 egg retrievals for women delaying motherhood. Extend Fertility, which recently expanded to a sixth city, says it has signed up more than 200 women in the past three years.

So why is this an issue? The problem is that this is one more example of a fertility technology being marketed to the public before it's go through clinical trials to assess whether it actually works. Success rates thus far have been pretty poor, but this hasn't stopped many of these clinics from claiming much higher success rates on their websites. Even the American Society for Reproductive Medicine, the fertility medicine's professional society, says that there isn't yet enough evidence to "validate the assumption that if you freeze your eggs now, your chances of a successful pregnancy will be better than your chances using your own fresh eggs at that point." ASRM currently recommends limiting egg-freezing to cancer patients and research studies.

Additionally, even if egg freezing does work, it's only going to be financially feasible for the wealthiest in society. It's a technological fix for social problem. Wouldn't it be better if we had more reasonable family policies that supported women in their desire to have both a career and a family? So ladies, think long and hard before you drop 10 grand to put your eggs on ice. It might buy you the time you need to establish your career or find that elusive partner, but it could also be nothing more than a great marketing ploy to get you to gamble with your hard earned cash.
-Andrea Kalfoglou

When There's a Market...

2007-05-14T12:55:00.000-04:00

Just when you thought you'd heard it all. Here's another way to be parted with your hard earned cash ladies. Is you partner complaining about the amount of time it takes for you to have an orgasm? NBC4 reports, that for a mere $1850 every four months, you can have collagen injected into your vagina to "augument your g-spot." Unnamed consumers testify to miraculous results on the provider's website. The California physician who developed the procedure declares he can't keep up with the demand. Before you decide you can't live without a G-shot, keep in mind that this is an "off-labeled" use of collagen and there are no clinical studies to support the effectiveness of this procedure. The website claims that injecting collagen in the vagina should have the same safety profile as collagen injections for urinary incontenence (which has received approval from the FDA). While the website reports that collagen is "natural" -- I suppose because it's collected from other people's bodies -- there are no less than 68 risks listed on the website. Now, if we can just get our health insurance companies to cover it like Viagra!
-Andrea Kalfoglou

Massachusetts Proposes hESC Funding

2007-05-08T23:21:00.000-04:00

Tags: Bioethics, Ethics, Stem Cells

Massachusetts Governor Deval Patrick unveiled plans, today, for a $1 billion investment in biotechnology and stem cell research, directly attempting to challenge California as the place to be for stem cell research. Like California, Patrick's plan is a 10-year plan that will fund, among other things, a stem cell bank and the nation's first centralized repository of new public and private stem cell lines, which will be overseen by the University of Massachusetts. It will be the world's largest of its kind (according to Patrick's office, anyhow), with Harvard, MIT, Massachusetts General and other hospitals contributing their lines.

Massachusetts might actually be able to give California a run for its money (or talent) here; in addition to being able to learn from CIRM's mistakes, Massachusetts has over 500 life science companies, several major universities, two dozen teaching hospitals, and four medical schools. This is just one of a list of things Patrick has done to undo Republican presidential hopeful and former Massachusetts governor Mitt Romney's time in office; Patrick's proposal requires legislative approval that he is very likely to get. In 2005, both the Senate and House supported a bill to encourage stem cell research that Romney promptly killed.

And continuing to deviate from party line, California Governor Schwarzenegger says he welcomes the competition; the more research being done, the better.
-Kelly Hills

is it time to change the formula, or time to stop using it entirely?

2007-05-07T23:57:00.000-04:00

The forensic pathologist who developed the currently used system of lethal injection has told CNN that while there might be new drugs that should cause the injection formulation to be revisited and revised, the procedure itself is medically sound if done by competent people.

While the article talks about Dr. Jay Chapman's motivation for devising this particular method of execution, and his opinion that perhaps we should consider bringing back the guillotine, the option of actually not killing people is nowhere to be found.
-Kelly Hills

Troops at Odds With Ethics Standards

2007-05-07T23:46:00.000-04:00

Not only is the Iraq war becoming a quagmire that will set back the well-being of every American and Iraqi, it is taking an enormous toll on our troops who are now stuck in Vietnam war circumstances--no clear mission, no ability to tell who their friends are, undersupplied and with rapidly waning support for the conflict on the home front. Not only is this taking a terrible toll on their mental health but it is undermining core ethics and values in our armed forces.

Iraq is not only a human disaster it is an ethical disaster as well. The neoconservatives who got us into this ill-advised, concocted conflict, who claim to stand for traditional American values, have done more to undermine then in troops and in our civic society than any enemy could have hoped to accomplish. Where is their moral accountability for what they have done?

More than one-third of U.S. soldiers in Iraq surveyed by the Army said they believe torture should be allowed if it helps gather important information about insurgents, the Pentagon disclosed yesterday. Four in 10 said they approve of such illegal abuse if it would save the life of a fellow soldier.

In addition, about two-thirds of Marines and half the Army troops surveyed said they would not report a team member for mistreating a civilian or for destroying civilian property unnecessarily. "Less than half of Soldiers and Marines believed that non-combatants should be treated with dignity and respect," the Army report stated.

About 10 percent of the 1,767 troops in the official survey -- conducted in Iraq last fall -- reported that they had mistreated civilians in Iraq, such as kicking them or needlessly damaging their possessions.

Army researchers "looked under every rock, and what they found was not always easy to look at," said S. Ward Casscells, the assistant secretary of defense for health affairs.

You can read the rest of the article here.

-Art Caplan

Republican Hopefuls Demonstrate Doublespeak

2007-05-07T20:03:00.000-04:00

What exactly, students sometimes ask me, is 'doublespeak'. Now I have a paradigmatic example to show them.

Herewith the wafflings, twistings, turnings and outright mumbo-jumboing of ten wannabe Presidents.The ten GOP presidential candidates held a debate on Thursday evening. Moderator Chris Matthews of MSNBC asked the candidates about stem cell research. Here is that section of the debate transcript.

Moderator: We have to go down the line again. It's always fun to ask these questions down the line. We have Mr. Reagan here. The camera will not focus on her, but I will tell you, it will now focus on you.

Mrs. Reagan wants to expand federal funding of embryonic stem cell research. Will that progress under your administration, Governor?

Romney: It certainly will. Altered nuclear transfer, I think, is perhaps the best source...

Moderator: Embryonic. Embryonic.

Romney: Altered nuclear transfer creates embryo-like cells that can be used for stem cell research. In my view, that's the most promising source. I have a deep concern about curing disease.

I have a wife that has a serious disease that could be affected by stem cell research and others. But I will not -- I will not create new embryos through cloning or through embryo farming, because that will be creating life for the purpose of destroying it.

Moderator: And you won't take any from these fertility clinics to use either?

Romney: I'm happy to allow that to -- or I shouldn't say happy. It's fine for that to be allowed, to be legal. I won't use our government funds for that. Instead, I want our governments to be used on Dr. Hurlbut's method, which is altered nuclear transfer.

Moderator: The same question, embryonic stem cell research with federal funds, sir.

Brownback: It will not, with all due respect to Mrs. Reagan and her desires here. I've studied this matter a great deal. We are curing and healing people with adult stem cells.

Moderator: OK.

Brownback: It is not necessary to kill a human life for us to heal people. And we're doing it with adult stem cell work, and it's getting done.

Moderator: OK. I'm going to have to go yes or no.

Governor Gilmore, for embryonic stem cell federal funding or not?

Gilmore: We can't create people in order to experiment with people.

Moderator: Governor Huckabee?

Huckabee: I would concur. I don't think it's right to create a life to end a life. That's not a good health decision.

Moderator: Congressman?

Hunter: No. I'd like to show Mrs. Reagan the alternatives, which are adult stem cells.

Moderator: Governor Thompson.

Thompson: There's so much research going on, Chris, you cannot answer that question yes or no. There's research currently going on right now at the Weissman Center (ph) in Madison, Wisconsin, that's going to allow for adult stem cells to become pluripotent, which will have the same characteristics of embryonic stem cells, so you do not have to kill an embryo.

Moderator: Senator, embryonic stem cell federal funding.

McCain: I want to thank Mrs. Reagan for the many kindnesses extended to me many -- and my fellow prisoners of war many years ago when we came home to this wonderful state.

I believe that we need to fund this. This is a tough issue for those of us in the pro-life community. I would remind you that these stem cells are either going to be discarded or perpetually frozen.

We need to do what we can to relieve human suffering. It's a tough issue. I support federal funding.

Moderator: That's a yes. Dr. Paul, yes or no on federal funding?

Paul: Programs like this are not authorized under the Constitution.

The trouble with issues like this is, in Washington we either prohibit it or subsidize it. And the market should deal with it, and the states should deal with it.

Moderator: OK. That's a no.

Giuliani: As long as we're not creating life in order to destroy it, as long as we're not having human cloning, and we limit it to that, and there is plenty of opportunity to then use federal funds in those situations where you have limitations.

So I would support it with those limitations, like Senator Coleman's bill in Congress.

Moderator: Mr. Tancredo?

Tancredo: There are billions of dollars going into this research right now. It does not require me taking money from federal -- from taxpayers in the United States to fund it...

Moderator: OK. Thank you.

Tancredo: ... because it is morally, I think, reprehensible in certain ways.

-Art Caplan

Dilbert Hires the Ethicist

2007-05-07T14:15:00.001-04:00

[hat tip: Brian Mooney; click image for full size cartoon]

An Invitation to Join the American Society for Bioethics and Humanities

2007-05-07T13:02:00.000-04:00

Tags: Bioethics, Ethics, ASBH

From the ASBH president, and AJOB associate editor Paul Root Wolpe:

Do you enjoy the kind of probing, cutting edge issues you read on bioethics.net., AJOB, and the blog? Do you have a scholarly interest in bioethics or the medical humanities? Then I would like to invite you to join the American Society of Bioethics and Humanities (ASBH).

The ASBH is a dynamic and wide-ranging professional society made up of clinicians, bioethicists, legal scholars, philosophers, theologians, social scientists, historians, and scholars of the medical humanities, among many, many others. The Annual Meeting will be held this year from October 18-21 in Washington, D.C. The theme, Connecting and Collaborating, is dedicated to the widest participation of people from across the disciplines. We hope those involved in human subject protection will join us and contribute to our always lively Annual Meeting.

In addition to the Annual Meeting, joining ASBH has other benefits. Members receive discounts on ten of the major journals in the field; receive our newsletter, ASBH Exchange, with articles and features; have access to the ASBH website, including access to our large membership directory; can join affinity groups in their areas of interest; and can become members of the premier community of scholars in bioethics and the medical humanities.

In order to give even a bit more incentive, join before June 1, and we can offer a 10% discount on your membership (send in only $60, $85, $100 or $125 from the four categories on the ASBH website ).If you have questions, please call our Executive Director, Amy Claver, at (847) 375-4877.

Paul Root Wolpe, Ph.D.
President, ASBH

Not-so-exquisite corpses

2007-05-04T15:26:00.000-04:00

NPR commentator Andrei Codrescu recently took in the plastinated corpses at "Bodies... The Exhibition" and found them a bit disconcerting. "Bodies..." is a knock-off of the famous Body Worlds exhibit that's been touring for some time. (Body Worlds is the subject of AJOB's March-April cover package.) And while these exhibits often prompt concerns about dignity, Codrescu bypasses that discussion and instead comments on the depressive effect the corpses have on the viewer. Their lack of life seems to drain something from him, leaving him cold. Codrescu recovers, though, with the help of a different kind of exhibition.
-Greg Dahlmann

A Code of Ethics for Robots?Uh, Yes. Please.

2007-05-03T07:25:00.000-04:00

In the current issue of The Scientist, Glenn McGee argues for a code of ethics to guide your treatment of your Roomba ... and to protect you for the day when it wakes up:

The South Korean people really love robots. Industry in South Korea receives millions in government subsidies to develop them. Recently, Park Hye-Young, of the South Korean Ministry of Commerce, Industry, and Energy’s robot team, said in a statement to French Press Agency that the Ministry hoped “to have a robot in every South Korean household between 2015 and 2020,” and predicted that these robots would develop “strong intelligence.”
South Koreans are not the only ones embracing robots. Already iRobot, a company founded by Rodney Brooks, director of the MIT Artificial Intelligence Lab, has sold at least two million Roombas, a little robotic vacuum cleaner. The promise of the robot vacuum and its cousins is that the home robot will become faster, more reliable, and more cost-effective than human domestic work. It has to get this “strong intelligence” part down first. My Roomba is a one-trick pony, sucking dirt while rolling in circles and slapping into the same walls every day as it relearns a 12' x 12' room. This is not Rosie from “The Jetsons.”
But the more important issue regarding today’s domestic robots and the future is not so much about intelligence as it is about ethics. If you ever watched the Roomba-sized robots hack each other to bits on the aptly named BBC-5 television program, “Robot Wars”, you know the fear that lives in the souls of many who will never buy a domestic robot: that their Roomba would one day awaken like the robots of The Terminator. A robot with sinister intentions, without ethics, or adhering dispassionately to a code of ethics where intuition and subtlety is required (remember RoboCop?) has been the fuel of science fiction for decades. Should we require robot makers to program in a code of ethics to domestic products?
Perhaps robots should be afraid of us too; whether or not they dream of electric sheep, the robotic sex toys under development are purveyed as better-than-real-life companions. But they are plastic and metal, not human. As humans build robots that learn what their owners desire, the dilemma of the robots of Blade Runner emerges: What do humans owe “purpose-built” machines who begin to reach awareness, or to so resemble awareness that it becomes a selling point? Should laws be written to protect robots from us, by requiring robot makers to stop short of, say, robosexual devices that learn to be incredibly intimate with humans and yet are owed nothing? If so, do we create such laws in the interest of robots, or to preserve our own human dignity by choosing not to create a new kind of slave, whether or not that slave is fully aware?
The South Korean government has taken a progressively minded step by convening a committee to draw up an ethical code to prevent humans from abusing robots and vice versa. The code draws in part on the work of science-fiction writer Isaac Asimov, and specifically, according to Park, on the three laws Asimov proposed for robot ethics in a 1942 story, “Runaround.” They are: 1) A robot may not injure a human being or, through inaction, allow a human being to come to harm; 2) A robot must obey orders given it by human beings, except where such orders would conflict with the first law; and 3) A robot must protect its own existence as long as such protection does not conflict with the first or second law.
Likewise, a committee of EURON, the European Robotics Research Network, met in Genoa, Italy, in June, 2006 and concluded that a code must be created to deal with the problems of hostility to and from robots, as well as how to avoid accidents, trace robots, ensure the secrecy of their data, and monitor the nature of their intelligence, which one member of the latter commission aptly described as “intelligence of an alien sort.”
It remains to be seen whether robots will become in some sense intelligent androids, capable of interacting as peers with humans and other parts of the world. In the meantime, we are much closer to making robots with “strong intelligence” than we are to creating a code of ethics to guide our stewardship of tin men, or to protecting humanity from misbegotten robotics. Either the effort to create a code of ethics to shape the evolution of robotics will be embraced, or we may reap the consequences. It only remains to be seen who will wake up first.

The Narrow Battle Ground of Late Term Abortion

2007-05-02T22:10:00.000-04:00

Over at Poynter Online's Everyday Ethics column, Kelly McBride talks to Art Caplan about the recent Supreme Court ruling on late-term abortions:

Doctors seek to abort these fetuses for three general reasons – if the mother’s health is critical because of a pregnancy-induced condition that cannot be controlled, if the fetus has a deadly infection that could spread to the mother, or if tests reveal the fetus has a fatal deformity that will doom the child to death. In the last scenario, many doctors would prefer to give a woman a choice to end the pregnancy, rather than force her to wait for natural labor to start, which could be months away.

By failing to describe the detail in these scenarios journalists create an environment where we can all believe the worst. If I’m against abortion, I might imagine reckless women aborting perfectly healthy babies at 26-28 weeks, the same gestational age of many babies currently in the neonatal intensive care. If I’m in favor of legal abortion, I might envision women dying, because infection sets in or her blood pressure rises too high.

In fact, neither scenario is likely, Caplan says. Doctors can still end a pregnancy and extract a fetus in these cases. The Supreme Court ruling affirmed a law that says doctors can’t take any action to harm the fetus during the process or after it is out of the womb.

It is still possible to ensure the fetus dies in the womb, Caplan said. Using an ultrasound for guidance, doctors can still inject potassium chloride into the fetus’ blood stream or heart, he said.

“This is about euthanasia, not Roe vs. Wade,” Caplan told me during a phone conversation. “Doctors are saying, 'I can’t do this procedure because I don’t know what to do about the fetus.' ”

Family Planning in China

2007-05-02T21:43:00.000-04:00

Andrea Kalfoglou of our Editorial Board blogs:

This may be old news by now, but on April 23rd, NPR reported that dozens of women in China were forced to have abortions of wanted children in southwest China. A family planning official in Baise say these claims have been investigated and were fabricated; however, human rights officials say that, Liang Yage and his wife Wei Linrong reported that Wei was forceable taken to the hospital in Basie city and was injected three times in the abdomen. Sixteen hours later her child was stillborn. She had been seven months pregnant with her second child. He Caigan, an 19 year old unmarried woman days away from delivery, was also forced to have an abortion, which has left her in physical pain and abandoned by her boyfriend. An anonymous eyewithess said he counted 41 occupied beds on just one floor of the maternity hospital in Baise and he believed that none of the women he saw had come to the hospital of their own free will. The NPR reporters speculate that these forced abortions may be a reaction to published population statistics that show the Baise government missed its family planning targets last year.

New and exciting forms of abstinence

2007-05-02T03:10:00.000-04:00

Tags: Bioethics, Ethics, Abstinence

Randall Tobias, head of the $15 billion President's Emergency Plan for AIDS Relief (PEPFAR) and administrator of the US Agency of International Development (USAID), resigned last week after he admitted having used a Washington escort service for massage. Tobias stated firmly that he did not pay for, or receive, sexual favors. His plea of innocence -- made while handing in his resignation -- will help the cause of Deborah Jeanne Palfrey, the boss of the escort service, who claims that her business is legal because it involves only the use of costumes, massages, lascivious conversation, and (for example) young women playing Monopoly in the nude.

The irony, of course, is that Mr. Tobias was a strong proponent of 'abstinence only' programs to prevent HIV transmission worldwide, and was also the chief enforcer of the 'Anti-Prostitution pledge', which requires USAID grantees to state their opposition to prostitution in writing and strongly discourages programs that distribute condoms to sex workers. In other words, Randall seems to have very much enjoyed the company of women who, in his professional role, he didn't mind exposing to risks of HIV infection worldwide. And if things were not bad enough, Mr. Tobias is quoted in his ABC interview as saying that he 'invited gals to come over to the condo' to give him a massage, stating a special preference for 'Central American gals.' Did he really say 'gals'? Mr. Tobias is one step away from being the Don Inus of global health.

On the other hand, according to his own account, Mr. Tobias did abstain after all. You might even say that the former 'AIDS Czar' was taking abstinence to a new erotic level, showing the rest of us that abstinence could be very very sexy, albeit without the sex, a way of having your cake and not eating it too. Perhaps it was an exercise in policy experimentation, a bold personal journey beyond the ABC approach to a place where you are not really faithful, not really abstinent, not really using a condom, not really at risk for HIV and not really having sex. (Such behavior may not be for everyone, so he wanted to try it out first.) Then again, maybe it was simply a case of an repressed hypocrite, who was riding his moral high horse last week, and whose name does not even register on the USAID or US Department of State websites this week.

What lessons are to be drawn from this? One possibility is to acknowledge, rather than deny, the pervasive sway that sexuality has over humanity, and try to translate that acknowledgment into science-based and psychologically realistic policies dealing with sexually transmitted diseases around the world. Given the number of lives in the balance in the fight again HIV/AIDS, winning that acknowledgment is far more important than explaining Mr. Tobias' puzzling failure to find a registered massage therapist in the nation's capital.
-Stuart Rennie

Art Caplan on MSNBC: Broken mental-health system puts us at risk

2007-05-02T02:42:00.000-04:00

Art Caplan writes on MSNBC that the Virginia Tech killings and a spate of other killings reveal the dangers of ignoring mental illness:

It is not just guns. In all my life I never thought I would write those words after a massacre involving a mass murder with a gun. But a week's worth of intense media coverage of the heinous murders of students and faculty at Virginia Tech and analyses focusing on guns by innumerable experts has left me furious.

I don't think the expert wisdom is even close to understanding what must be done to try and prevent this type of tragedy in the future. It is not just guns. We need to fix a broken, abandoned and pathetic system of mental-health care.

In the same month that Seung-Hui Cho killed and injured scores of people at Virginia Tech, a researcher at the University of Washington was shot to death in her office by a former boyfriend, who then killed himself. Rebecca Griego had gotten a restraining order against Jonathan Rowan. When he showed up at her office he fired five shots into Rebecca. A colleague at the university said it was a "psycho from her past."

In Mandeville, La., a man who had just had a restraining order issued against him by his estranged wife allegedly ambushed her and their three children. Police say James Magee chased his wife's gray Toyota Scion for several blocks, ramming it repeatedly until the car crashed into a tree. As Adrienne Magee tried to get out of the vehicle, James Magee allegedly stepped out of the truck and shot her in the head with a 12-gauge shotgun loaded with buckshot, killing her instantly. He then opened fire on his children as they tried to flee the vehicle, killing his 5-year-old son and striking his 7-year-old daughter in the chest, according to police.

Magee had never gotten any help for previous violent outbursts.

And in Queens, New York, a man killed his mother, a wheelchair-bound man and a home health care worker before shooting himself dead - just minutes after the mother called 911 pleading for help. The mother's surviving sister blamed police for failing to protect her sister from the "mentally ill" son. "My sister was scared!" Annetta Taylor screamed. "She thought this might happen!" Cops outside the house tried to calm her, but she continued. "I blame you!" she said. "She called and nobody would respond!"

The murdered mother, Sonia Taylor, had called police twice Monday during fights with her son Wade Dawkins. The police had been called to the home eight times since last May. During an incident this past October, Taylor told police her son, a drug abuser with no rap sheet, was throwing things around the house and acting violently.

The police brought him to a local hospital for an evaluation. He was quickly sent back to her house.

All of these killings involved not just guns, all involved killers who might have benefited from mental-health treatment. None got the help they needed.

The Virginia Tech murderer was - to be blunt - totally crazy. He fit the dreary profile all too familiar from the shootings at Columbine High School near Denver and the Nickel Mines School in Amish country near Lancaster, Penn. Cho was an angry outcast, preoccupied with thoughts of violence against those whom he saw as bullying, victimizing or just plain ignoring him. From the tapes he made of himself, it is obvious that he was in the grip of paranoia. He had profound social withdrawal, suicidal thinking, destructive fantasies and was a known stalker. He scared people. But he fell through the cracks of university bureaucracy and a hodgepodge mental-health system.

Report after report over the past decade have warned that most public mental-health systems have, to quote one, "all but disintegrated." Such systems, whether local, state or federal, are badly fragmented and ill-equipped to address our nation's mental health in a comprehensive manner.

States have been balancing their budgets on the backs of the mentally ill for years. A recent example is North Carolina, where 33 percent cuts in the state budget have been proposed. Advocates for the mentally ill there say that if the cuts hold, it means that in many towns the mental-health system will simply "collapse."

But you don't really need to read the reports or look at the budgets. Look out your window.

Most of the homeless people wandering around America's cities are mentally ill. Try to get help for your anorexic daughter, alcoholic brother-in-law, suicidal spouse and see what happens. See what happens if someone threatens or harasses you repeatedly in terms of a coordinated police and mental-health response.

Serving in Iraq or Afghanistan with post-traumatic stress disorder or another mental illness? Good luck. The military's mental-health system is overwhelmed and understaffed. The services available to our soldiers' families are just as bad.

I don't buy the line that says "guns don't kill people, people kill people." I think there are too many guns with too much firepower that are too readily available. When the damaged and the deranged amongst us go undiagnosed and untreated in a world of guns, then fatalities result. The guns are not going anywhere. Politically, we lack the will to do anything about that problem.

But that is not the whole problem. It is time to start repairing a mental-health system that serves too few, costs too much, protects too little and cannot even find the means to help those who clearly are in desperate need. Maybe after Virginia Tech we can at least find the will to do that much.

Tags: Bioethics, Ethics, Mental Health

compassion, constitutional rights and Penelope London

2007-05-02T02:13:00.000-04:00

Tags: Bioethics, Ethics, Abigail Alliance

The question of whether terminally ill patients have the constitutional right to access experimental drugs is the subject of hot scholarly debate. As the ten judges of the United States Court of Appeals for the District of Columbia Circuit are reconsidering the original panel opinion in the Abigail Alliance case, which held in favor of such a right, scholars duke it out here, here, and here.

Today’s Wall Street Journal features an article entitled Saying No to Penelope that personalizes the human drama behind the lofty constitutional issues raised in the Abigail Alliance case. Indeed, the heartbreaking story about four-year old Penelope London may present the strongest argument in favor of individual access to unapproved drugs outside a clinical trial: the moral imperative to respect an individual family’s decision to do whatever it takes to save the life of their dying child.

The article details father John London’s heroic effort to obtain experimental cancer drugs for his four- year-old daughter, who is dying from a recurring and aggressive neuroblastoma. Having exhausted all traditional forms of therapy including radiation, chemotherapy, a bone marrow transplant, and surgery, London turned to experimental treatments for his daughter. When the cancer returned after three different experimental treatments, Mr. London thought he was out of options for Penelope. Then he heard about a drug being developed by Neotropix Inc. of Malvern Pa. The drug is a virus that strikes pigs. In early test-tube and mouse experiments, the virus appears to attack certain cancer cells. The risks of injecting the virus into a human being are unknown, however; it has been tested in just six adult human beings.

With the support of several legislators, including House Speaker Nancy Pelosi, London prevailed on the company to sell him the drug for use by his daughter. The FDA has said it will not stand in the way (presumably invoking its “compassionate use” exception to its ban on the use of unapproved drugs). The company refused the request.

The article describes the company’s refusal as principally a business decision: the company fears that if it provides the drug and Penelope dies, its ongoing clinical trials will be stopped cold. The company’s CEO reported that the FDA had put Neotropix’s trial on hold for four months after one of the adult patients in an early trial. “You could delay the opportunity for lots of patients to get this drug if you sidetrack it for one patient,” an investor backing the firm told the Journal. The CEO said, “in a small company with limited financial resources and a high risk profile, you really have to reduce the risks to drug development.”

Couching the story in terms of a seeking the appropriate balance between creating a risk to a business against sure death for Penelope, the Wall Street Journal article makes a strong case against the company’s refusal to give the drug to the child and her family.

The issues are not that simple, however. It’s not just the risk to the company that is at stake. Allowing terminally ill patients to obtain investigational drugs outside of clinical trials will undermine the FDA’s ability to protect the public health. Current FDA restrictions are designed to move the drug industry toward better research, expanded clinical trials, and better drugs for all sick people. The phased and planned testing of drugs promotes good science, which ultimately serves the public by preventing charlatans from preying on vulnerable patients, and the unscrupulous from selling dangerous products. Allowing widespread access to experimental drugs will interfere with the process by removing the incentive for patients to participate in essential clinical trials, in which half of patients are typically assigned to receive a placebo instead of the drug.

Moreover, the decision to say no to Penelope may well have protected her. As the journal noted in passing, Neotropix cited safety concerns that buttressed its business decision. The company feared the unknown consequences of pumping massive amounts of the drug -- a virus -- into Penelope. To be sure, Penelope chances of survival were not increased by company’s decision. But it is fiction to suggest she had nothing to lose had the decision gone her father’s way: the drug he sought could have caused her unspeakable suffering without providing her any benefit at all. Without clinical tests, there is no way to know what effect the drug would have had on the child.

With the national media spotlight on Penelope’s case, Neotropix might very well revisit its decision. In the meantime – and regardless of the ultimate decision about the contested medication – Penelope London and her family must carry on. My thoughts and best wishes are with them.
-Alicia Ouellette

For the softest hair, use hamster extract

2007-04-24T17:39:00.000-04:00

Tags: Bioethics, Ethics, Genetic Modification

Oliver has Hurler Syndrome, leaving him unable to break down deadly toxins in his body. Oliver also has hamster extract. The hamster extract appears to counteract some of the worst side effects of Hurler's Syndrome, and as an added bonus? Makes his hair softer, too.

Of course, the Daily Mail's take on the story brings to mind vast legions of hamsters being milked for their extract in some sort of dystopic hamster version of The Matrix. A quick trip to Google brings a slightly less science fiction, more science fact account of the treatment, which involves enzymes taken from genetically modified Chinese hamsters, given via slow IV drip once a week. The enzymes appear to mimic those Oliver is missing, cleaning up the toxins, helping him grow, and giving him much-needed energy.

Me, I'm just slightly disappointed there will be no hamster Neo.

(With thanks to birthday girl Laurie for the tip!)
-Kelly Hills

Bullheaded Bush Administration Puts Abstinence Ideology Before Lives:Art Caplan on Blind Faith Sex-Ed

2007-04-24T15:36:00.000-04:00

Is the Bush administration capable of allowing fact-based, scientifically proven evidence rather than ideology or blind faith to shape its public policies? When it comes to what to do about air pollution, endangered species, embryonic stem cell research, the disposal of farm waste, forest management or lead poisoning, the answer is apparently not.

Nowhere is this administration's reliance on ideology and faith and willful ignorance of science more dangerous and harmful than when it comes to sex. The president and his people continue to be willing to let your kids get dangerous diseases and to tolerate tens of thousands of preventable abortions by ignoring the fact that abstinence-only education does not work.

In a just released major study ordered by Congress, independent researchers found that in four typical abstinence-only programs sampled from around the country there was absolutely no difference between the sexual activity of kids in these program and kids who were not. In one of the abstinence-only programs studied, the students met and got the 'no sex' message for an hour every day! All of the abstinence-only programs in the study had at least 50 hours of class time. The kids were in the programs for one to three years starting at about age 11.

Chastity-only sex ed had no impact whatsoever on the kids' sexual behavior. The abstinence-only kids admitted to having sex at the same rate and starting at the same age as other students not in these classes. Whether they were in an abstinence-only class or not, by the time they reached 17 years of age, half the kids said they had had sex and half had not.

Telling kids every day "don't have sex" - and nothing else - really does not work. American teenagers continue to get pregnant at a startling rate, leading to about 250,000 abortions every year - a higher abortion rate than in Canada, Sweden, the Netherlands or France, where sex ed consists of more than just "say no."

The rates of sexually transmitted disease among American kids continue to outpace those in other developed nations. There is plenty of scientific evidence from the United States and Europe that sex-ed programs that talk about contraception, condoms and abstinence do a better job at preventing unwanted pregnancies and controlling sexually transmitted diseases than abstinence-only programs.

This newly released research is just the latest in a long parade of studies that have failed to show any impact or efficacy of abstinence-only sex ed. So might we expect the Bush administration to look at the latest confirmatory data and admit that it is time to stop spending roughly $50 million a year of your tax money on abstinence-only programs that don't work? Nah.

Bush administration official Harry Wilson, the commissioner of the Family and Youth Services Bureau at the Administration for Children and Families, offered this response: "You can't expect one dose in middle school, or a small dose, to be protective all throughout the youth's high school career."

Actually, you cannot expect abstinence-only sex ed to be protective, effective or in any way useful at all. Ever. Period. Enough already. It's time to pull the plug on abstinence-only sex education. There are too many lives at stake to put up with a reproductive-health policy that is willing to kill and disable our kids out of an allegiance to a blind faith in something that does not work.

Deborah Spar on Paying for Eggs

2007-04-21T22:31:00.000-04:00

Harvard’s Debora Spar has a commentary in a recent New England Journal of Medicine article that calls for an improved debate over egg donation and payment policies. Spar highlights a central inconsistency in American egg donation policy—we allow women to sell eggs for reproductive purposes, but not for research, even though the risks and benefits to donors are the same in both cases. Both donors undergo the same set of medical risks, and both receive roughly the same direct benefits—basically nothing. Yet in one case we allow women to sell their eggs for whatever the market will bear, with no informed consent requirements whatever, and in the other we prohibit any direct payment except for expenses, variously defined.

Spar notes that much opposition to egg sales stems from fears of exploitation and “commodification”, but argues that these concerns apply equally to both reproductive and research donors. There’s already a thriving market in eggs, fueled by would be parents who are willing to pay whatever it takes, to the extent of mortaging houses and liquidating retirement accounts. Spar notes this market is getting steadily larger—her back of the envelope calculations indicate that roughly 13,000 IVF cycles with donated eggs were performed in 2003, almost all of which were paid for, at an average price of around $5,000. Paid egg donors get no substantial benefit from the procedure beyond the pay—the purchasing couple takes the eggs and there’s frequently no contact between donors and purchasers. Unlike organ donation, which comes with a mandated informed consent procedure, there are no such requirements for egg donation— brokers or fertility clinics can tell donors as much, or as little, as they feel like.

Why this transaction is less exploitive or commodifying than donating eggs for research really isn’t clear. There’s no compelling reason why blonde, leggy volleyball players who go to Harvard should be able to sell their eggs for $50,000 to wealthy infertile couples and women wishing to donate eggs for research can’t get paid anything. Other countries with egg donation policies frequently limit or prohibit payment for eggs, but treat both reproductive and research donors the same way.

Spar argues that current no-payment-for-research policies makes volunteers the only substantial source of oocytes for research. Anti-payment advocates have focused more on why women shouldn’t get paid and less on why they should—or will—volunteer to undergo a medical risk for free, or why anyone who can sell their eggs for reproductive purposes should be willing to donate them for research for nothing. Allowing payment for some donations but not for others seems almost certain to insure a shortage of eggs for research.

It should be noted Spar is not alone in these views. Judith Daar and Russell Korobkin of UCLA have argued here that financial incentives are ubiquitous—and both legal and ethical-- in a market economy and that bans on payment for eggs presumes that women are incapable of making informed decisions. Our own Bonnie Steinbock has offered a different defense of payment in the Mt Sinai J Medicine [2004 Sep;71(4):255-65].

The major obstacles to consistent treatment of egg donors are political rather than substantive. Proposals to ban payment for reproductive donors would produce howls of protest from those who profit from the assisted reproduction process, and proposals to pay research donors with public money would likely be considered dead on arrival. Spar’s proposals to understand and mitigate the risks of egg donation, insure that all consent to donation is informed, and have a serious debate on whether any women should be allowed to sell eggs are all sensible, but don’t look for any progress anytime soon.
Jim Fossett AMBI/Rockefeller Institute of Government
Bioethics and Federalism Initiative

The States and Stem Cells:It's All Over. States, not the Federal Government, Matter

2007-04-16T09:17:00.000-04:00

We hate to say we told you so, but we did. Stateline.org’s Christine Vestal has a story here that details recent state actions to eliminate restrictions and provide financial support for embryonic stem cell research. Meanwhile, in Washington, both House and Senate have passed bills expanding the stem cell lines that federal funds can be used to support, but without margins sufficient to override a promised Presidential veto.

While details are still fuzzy, the most substantial state action was in New York. The recently enacted state budget appropriated $100 million for stem cell research, with an additional $500 million expected to come from somewhere, possibly the conversion of a not-for-profit health insurer to for-profit status. The budget creates an Empire State Stem Cell Board inside the state Department of Health that has a funding committee, charged with managing the project review, award, and oversight processes, and an ethics committee, charged with enacting appropriate ethical standards for research. Both committees are appointed by the governor, with some number of members to be nominated by state legislative leaders. Funding is significantly less than initially proposed by Governor Eliot Spitzer--$600 million rather than $2.1 billion-- but the board’s charge seems clearly focused on stem cell research rather than the broader, economic development oriented, language in the governor’s original proposal. Additional appropriations can certainly be made to the board in later years, but a large bond issue initially proposed by the Governor was not authorized. The official language is in Part H of this bill.

Vestal also points to recent development in Iowa and Massachusetts. Iowa governor Chet Culver signed a bill repealing a 2002 ban on stem cell research, and Governor Duval Patrick of Massachusetts has asked the state’s Public Health Council to rescind regulations adopted under Governor Mitt Romney which prohibited the use of stem cell lines created for the purpose of research. An anonymous administration official quoted in this Boston Globe story indicates that Patrick intends to propose expanded state support for stem cell research in a variety of ways.

Meanwhile, both the U.S. Senate and House of Representatives have passed versions of the bill they passed last year expanding the number of stem cell lines eligible for federal funding support. In neither house was the margin large enough to override a veto, so the ultimate outcome—no change in federal policy—seems clear. The rhetoric on both sides, at least in the Senate seems to have been better suited to Oprah than the self-styled world’s greatest deliberate body.Washington Post reporters Rick Weiss and Dana Milbank note a range of factual inaccuracies in the Senate debate, as well as Senators’ invoking numerous tragic illnesses experienced by themselves, family members, and constituents in support of their positions.

Both houses must now pass a reconciled version of the stem cell bill, which President Bush has promised to veto. Neither house seems likely to be able to override this veto, thus insuring that federal policy will remain unchanged. States, however, are continuing to move ahead. Expect it to be this way for a while.
Jim Fossett
AMBI/Rockefeller Institute of Government Federalism and Bioethics Initiative; (with thanks to Katie DiLello)

Phoenix, Daniels and XBR-TB

2007-04-13T11:40:00.000-04:00

A lot of people - myself included - wanted additional information about the recent reports of Robert Daniels, an XDR-TB patient currently housed in the jail ward of a Phoenix hospital. Google News and USA Today do not disappoint! From the article, a couple of the more serious questions we all had can now be answered.

Q: Did Daniels know he was supposed to wear a mask out in public? A: Yes - apparently Daniels was living in an indigent patients home under voluntary quarantine post-hospitalization in 2006, when he was caught going to the convenience store several times without wearing a mask. His explanation? He thought the doctors were overreacting, since he was on medication and feeling better.

Unfortunately, this attitude isn't rare, and is one of the reasons we have many drug-resistant strains of diseases. Patients are notoriously bad at not taking their medication once they start to feel better, or otherwise underestimating the need for finishing a prescription.

Q: Why did they take away his TV, phone, radio, etc? He must have done something, right? A: Wrong. I'll just quote from the article on this one, since it's kind of unbelievable. The sheriff, Joe Arpaio, said that "Jailers seized his TV, clock radio and phone in February, saying he should be treated like other "inmates." His cellphone was returned to him Tuesday after news reports about his incarceration." The sheriff says he'll get the TV back "soon".

Of course, why he should be treated like other inmates wasn't addressed, other than the implication being that he's living in the inmate ward of the hospital, therefore he should be treated like the rest of the inmates. But for better or worse, Daniels is not an inmate and has not (nor will be) charged with a crime; he's under a civil commitment to protect the public health while he's being treated. And it makes you (or at least me) wonder - if the media had not gotten wind of this story, what would have happened?

The return of some technological items also doesn't change the fact that Daniels is living in a jail cell. He still can't shower, and can't even turn the light off in his cell - a low wattage bulb burns 24/7. If he does remain civilly committed for the rest of his life, is this really how he should be forced to live it, because he contracted a strain of disease that we cannot cure? Aren't we punishing a victim, here?

Certainly Daniels made a mistake by not following doctor/public health orders, but how long does that punishment last? He says he's learned his lesson, and it was finally explained to him in a way that he understood just why he had to wear a mask. Do we ever break down and say okay, and give him a chance to live, with limits, in society again? And if not, don't we have some obligation to, in exchange for locking him away for societal protection, provide comfortable housing and amenities? -Kelly Hills [The TV and phone have just been returned - Glenn]

Tags: Bioethics, Ethics, Quarantine

Pharmalot!

2007-04-13T11:33:00.000-04:00

Ed Silverman, long time medical reporter with the newark star ledger, has shifted over to an on-line blog on the pharmaceutical industry. The blog is well worth a look: pharmalot.com.
-Art Caplan

Before Don Imus...the Too Fat Polka

2007-04-13T11:30:00.000-04:00

Long before their was Don Imus their was Arthur Godfrey who hosted radio and television talk shows in the 1940s and 1950s. Long before there was political correctness, Godfrey had a smash hit record, called the Too Fat Polka. This song had a famous lyric which went "I don't want her you can have her, she's too fat for me". Well apparently physicians in Scotland are fans of Godfrey's. They have recommended that fat women be turned away from IVF clinics until they lose weight:

A leading group of Scottish doctors have recently claimed that Obese women should be automatically barred for NHS fertility treatments until they lose weight. According to the Scottish Committee of the Royal College of Obstetricians and Gynecologists, a woman with a body mass index (BMI) higher than 30 should be placed on a waiting list until she has dieted to an agreed weight.
Beth Heller, holistic fertility expert and director of Pulling Down The Moon, a Chicago based fertility treatment center, agrees that overweight women who lose weight are going to have a better chance at conception. "There is a ton of research which supports the fact," she says.
However, everyone knows that losing the weight isn't easy. As controversial as this debate is, it highlights the need for fertility specific weight loss programs (Like Pulling Down The Moon and Fertility Centers of Illinois' Feeding your Fertility Program) that can help women lose weight while making food choices specifically supportive of conception.
In addition, there are other holistic fertility treatments and community support groups that help women channel their motivation of having a baby into getting healthy enough to carry one. Beth Heller further claims that overweight and IVF is a problem that is just going to get bigger. "The National Institute of Health cites overweight as a major reason why the fastest growing group of women experiencing infertility is those under the age of 25," she says. For further information visit www.pullingdownthemoon.com

-Art Caplan

So it Goes: Kurt Vonnegut 1922-2007

2007-04-12T02:33:00.000-04:00

"Be careful what you pretend to be because you are what you pretend to be..." - Welcome to the Monkey House

... On Vacation Until April 11 ...

2007-04-05T09:44:00.000-04:00

Is Phoenix Taking Quarantine Too Far?

2007-04-03T23:45:00.000-04:00

In a modern day Typhoid Mary case, Arizona has opted to quarantine a man infected with extreme drug resistant tuberculosis (XDR-TB) - in the local county hospital's Ward 41, the section set aside for sick criminals. Robert Daniels has been locked up there since last summer, and is going to be there...indefinitely. He says that he's being denied showers, has to clean with wet wipes, and has had his television, radio, personal phone and computer, etc, removed. He is effectively in solitary confinement, visited only by the medical personal who make sure he takes his medication. And I have to wonder - this really the least restrictive method of protecting the public? While I can understand having to remove someone who's a serious threat to the community during treatment, is (effectively) a jail cell the appropriate place? Why do the Phoenix hospitals not have isolation rooms outside their criminal ward? What are they planning on doing during a major outbreak of any massively contagious disease - toss out the inmates and take over the cells? And why is he being denied a television, radio, personal phone and computer, and etc? It's not like XDR-TB is going to attach itself to an email and infect the world...

There is an interesting discussion of a ruling by the European Court on Human Rights in this article by Jerome Amir Singh that suggests how to determine if forced quarantine and isolation are reasonable and justified measures (a topic Matthew Wynia wrote on in the January issue of AJOB). The courts ruled with the applicant in a Swedish case where the public health officials wanted to lock up a man who'd spread HIV after being told (basically) to knock it off, saying that "any such detention must be in compliance with both the principle of proportionality and the requirement that there be an “absence of arbitrariness” such that other less severe measures have been considered and found to be insufficient to safeguard the individual and the public."

The Arizona XDR-TB case is clearly flunking some of the most basic requirements of confinement for a public health matter. Singh (et al) say that

The use of legally sanctioned restrictive measures for the control of XDR-TB should not obscure the fact that being infected is not a crime. A strong reciprocal obligation is borne by authorities so wishing to invoke these measures. Those who are isolated require humane and decent living conditions. In fact the restriction of their liberties is more for a collective good than for their own. Thus every effort must be made to ensure conditions of living that preserve dignity.

I'm pretty sure being locked up in a cell, no human contact, no mirror, no shower, no forms of entertainment, etc, for an indefinite period of time, is about the furthest you can possibly get from preserving dignity.
-Kelly Hills

Socrates 2.0The Birth of an Online Masters in Bioethics

2007-04-03T20:48:00.000-04:00

In the Scientist this month, I chronicle the development of the Alden March Bioethics Institute's new Master of Science in Bioethics degree [Click here to download a flyer], beginning with my fight with the Apple and Google people and ending with their victory and our cool new program (which replaces a five year-old program using ancient technology and a small pool of visiting faculty):

Last summer, I had a religious experience at the Googleplex in Mountain View, Calif. I was on the Google campus by invitation to attend Science Foo Camp, a small gathering of people in science, medicine, and computing. Google, Nature, and the O'Reilly Group sponsored the event. At the meeting, we gathered around tables, pit fires, and indoor tents, as we reached across disciplines using technology.
For my session, I proposed the following: Socrates would not teach ethics on the Internet. It was a heady claim to make at the forum where Web 2.0 was invented. At least two people in my session clearly believed they were actually channeling Socrates.
Going into the session, I was really sure of myself. I've taught ethics. Whether my students are future doctors, attorneys, scientists, or physicians, they seem to glean the most when they are forced to consider presuppositions about life and profession. For more than a decade I have held that professors inspire this encounter when they roam the room, lock eyes, and compel contemplation.
Online education, in other words, wouldn't cut it. Sure, there was a place for certain things. You could teach research ethics regulations on a cell-phone browser. Online lecture notes and PDFs of readings? Fine. Chat on the Net has been so effective it even results in marriage. On Secondlife.com, people certainly explore moral boundaries. But learning about the moral life on iTunes? Sorry, not buying that one.
There's no good reason I should have such reticence. I started one of, if not the first, bioethics Web site in 1994; built a unique journal around online debate in 2000; and created the first editors' blog for a biomedical journal in 2004. I waste a lot of time online. Yet when it came time to write a grant to teach research ethics to clinicians and government officials in Ghana, I didn't even consider distance learning. My jet airplane-dependent research ethics training program application fell flat because flying people to America from Ghana to take classes was too expensive. Duh. I began to doubt my convictions.
And so I found myself in Mountain View arguing a case to some leaders of Apple's iTunes University, who were eager to hear that I was wrong. I gave my defense of the Dead Poet's Society's theory of teaching to people who actually use iPods to teach college students. They didn't disappoint.
Right away, we began to test the question. We recorded actual ethics cases in progress, interviewed experts on the questions at hand, and built simulation models for learning the foundations of clinical ethics. We integrated live chats and threaded chat and group projects such as a bioethics wiki. We made it all portable, so that students from India or rural South Dakota could participate. Instead of looming professors, we opened additional dimensions of interactivity, and built a learning community that lasts longer than two hours twice a week. It was so much fun that I found myself working all day and all night, and within three months we'd submitted an online masters program to the State of New York. I forgot Socrates and wanted to meet Steve Jobs.
And so this fall the first class will begin at masters.bioethics.org, an entire program built around these technologies. The pilot certificate program we're offering now has taught us that students would like their professors to have a rewind (and stop) button, want intensive mandatory ongoing conversations, love having a library of relevant interviews with professionals from science and medicine about real cases, and sustain a level of dialogue that I've never seen matched around a physical table. We won't really know whether our program worked until the first class graduates in a year, or perhaps the effects will manifest themselves later as the alumni continue to use our online resources.
So would Socrates teach ethics on the Internet? Maybe, maybe not. But the intensity of real ethical decision-making seems to work with iTunes U and other technologies far better than the Textbook 1.0 approach of ten years ago. And maybe that's the point: Socrates definitely wouldn't have used an anthology.

[You can read the complete column and the rest of The Scientist here; in other news about the new masters program, Alicia Ouellette, director of the AMBI Health Law & Bioethics program, was interviewed In the AlbanyTimes-Union about the new Juris Doctorate/Master of Science in Bioethics 3 year degree program. And Albany Business Review discussed the sponsorship of Apple for the new Masters program]

MAJOR NEWS:Sorry, Wisconsin: The Jig is Up on Patents in Embryonic Stem Cell Research

2007-04-02T22:57:00.000-04:00

From The Foundation for Taxpayer and Consumer Rights in California and The Public Patent Foundation (PUBPAT) via Jon Merz comes the most important news in stem cell research since 2000:

PTO REJECTS HUMAN STEM CELL PATENTS AT BEHEST OF CONSUMER GROUPS:
Santa Monica, CA -- April 2, 2007 -- The U.S. Patent and Trademark Office has upheld challenges by consumer advocates to three over-reaching patents on human embryonic stem cells and rejected patent claims by the Wisconsin Alumni Research Foundation (WARF), the Foundation for Taxpayer and Consumer Rights (FTCR) said today.
"This is a a great day for scientific research," said John M. Simpson. FTCR stem cell project director. "Given the facts, this is the only conclusion the PTO could have reached. The patents should never have been issued in the first place."
The challenges were filed last July by FTCR and the Public Patent Foundation (PUBPAT) because the three WARF patents were impeding scientific progress and driving vital stem cell research overseas. FTCR and PUBPAT argued that the work done by University of Wisconsin researcher James Thomson to isolate stem cell lines was obvious in the light of previous scientific research, making his work unpatentable. To receive a patent, something must be new, useful and non-obvious. The PTO agreed with the groups.
Its decision said, "It would have been obvious to one skilled in the art at the time the invention was filed to the method of isolating ES cells from primates and maintaining the isolated ES cells on feeder cells for periods longer than one year. A person skilled in the art would have been motivated to isolate primate (human) ES cells, and maintained in undifferentiated state for prolonged periods, since ES cells are pluripotential and can be used in gene therapy."
The PTO decisions were dated Friday, March 30 but were received today. WARF has two months to respond to the PTO ruling and seek to change it. Third party requests for patent re-examination, like the ones filed by FTCR and PUBPAT, are ultimately successful in having the subject patent either changed or completely revoked roughly 70% of the time.
Dr. Jeanne Loring, a stem cell researcher at the Burnham Institute for Medical Research, filed statements in support of the re-examination requests.
"The real discovery of embryonic stem cells was by Martin Evans, Matt Kaufman, and Gail Martin in 1981, and none of these scientists considered patenting them," said Loring. "It is outrageous that WARF claimed credit for this landmark discovery nearly 15 years after it was made."
In the face of the challenges by FTCR and PUBPAT WARF announced in January that it would ease its licensing requirements on human embryonic stem cells. "Now that the PTO has ruled, WARF should simply drop all its claims," said Dan Ravicher, PUBPAT Executive Director. [ed: yeah, hold your breath indeed...]
The groups said the patents' dubious validity is underscored by the fact that no other country in the world honors them. As a result, U.S. researchers have sent research monies abroad where they can avoid paying royalties to WARF. California voters approved the nation's largest publicly funded stem cell research program in 2004 with Proposition 71, which allocated $3 billion in grants over the next 10 years.
More information about FTCR and PUBPAT's challenges to the WARF stem cell patents (U.S. Patents Nos. 5,843,780, 6,200,806 and 7,029,913), including copies of the Patent Office's Orders rejecting the patents, can be found here, and you canr ead John Simpson's Op-Ed explaining the need for the patent challenges here.

Hold Your Breath

2007-04-02T20:45:00.000-04:00

Not to be left out of the recent slew of video posts, I offer "Hold Your Breath", a new film from the Program in Bioethics and Film at Stanford's Center for Biomedical Ethics (whew, long title). A documentary by Maren Grainger-Monsen, Hold Your Breath looks at multi-cultural miscommunication in medicine. From the website,

After fleeing Afghanistan in 1979, Mohammad Kochi settled in Fremont, California and raised his family. Just when life seems to be getting easier for Kochi, he is diagnosed with an aggressive, life-threatening cancer. When Mr. Kochi rejects chemotherapy and instead embarks on a pilgrimage to Mecca, his doctor fears that family members acting as interpreters have misinformed Kochi about the gravity of his disease.Meanwhile, Kochi’s daughter, Noorzia, blames a culturally insensitive health care system for her father’s rapidly declining health. This haunting documentary exposes the poignant clash between ancient Islamic traditions and contemporary medical technology through intimate moments of anguish, frustration and hope.

There are screenings across the country, and select PBS stations will also be airing the documentary this month. For those of us unlucky enough to live in markets without either, a short video clip can be seen here.
[With thanks to Rebecca Garden and Audrey Schafer!] - Kelly Hills
[and thanks for the heads up from Maren Grainger-Monsen! - Glenn]

50/50: Choice About Huntington's Disease on Film

2007-04-02T00:02:00.000-04:00

Ok why not. An all YouTube day. We roll like that.

This one is a preview of a documentary from filmmakers Ted Bogosian, Barry Levinson and Tom Fontana, with the preview hosted by Danny DeVito; the film, 50/50, explores the dilemma that a carrier of Huntington's Disease faces when she realizes that she has a 50/50 chance of passing the devastating illness to her offspring. [Hat tip to someone named Teddy Bogosian, who emailed us from ClickStar about this "film about bioethics"]

"A world where.."

2007-04-01T18:29:00.000-04:00

I can't think of a good explanation for posting this video by Five for Fighting for the Autism Speaks group, unless looking in my own child's eyes is enough. Somehow music and experience open doors to thinking about issues we don't work on in bioethics. Anyway, if you like FfF you'll like this.

Migramatic Shock:Alan Milstein on the Stanford Prison Experiments

2007-04-01T17:54:00.000-04:00

Alan sounds off on the Jon Stewart oddity of the year:

What a Milgramatic shock to see Phillip Zimbardo on Jon Stewart the other night to promote his new book. Zimbardo, of course, was the Principal Investigator of the Stanford Prison Experiment in 1971, in which healthy volunteers were recruited to participate in a psychology experiment to explore, allegedly, how good people turn evil. (The subtitle of his new book.) He has made a career and, apparently, a nice living on a human research project regarded by most bioethicists today as patently unethical because it offered all risk and no benefit to the student subjects.
One of the main disincentives to even considering an unethical experiment, in addition to the threat of being sued by an enterprising plaintiff’s lawyer, is supposed to be the prohibition against publishing or promoting the results of such a study, even if scientifically sound. That has never stopped Zimbardo or his handlers. The Professor was even brought in to testify on behalf of one of the Abu Ghraib prison guards, opining that his experiment yielded scientific proof that human beings could not help themselves in such situations from turning cruel. The testimony, according to Zimbardo himself, was ignored by the tribunal.
What Zimbardo has never understood is that human beings simply should not be treated as a means to an end, as mere guinea pigs or, to use the terms from another horrible era, logs or material. When an experiment crosses that line, the only evil it finds is in the researcher.

Hard Data Doesn't Represent the Best Medicine

2007-03-31T11:17:00.000-04:00

An article in the late February issue of Time Magazine on evidence-based medicine and why it might be a bad thing for doctors to fully rely on it reminded me of what has to be my hands-down favourite journal article, ever. Now four years old, it's critique of evidence-based medicine is still one of the sharpest I've ever seen. From the BMJ website: Parachute use to prevent death and major trauma related to gravitational challenge: systematic review of randomised controlled trials.

A Dr. Gordon Smith and Ms. Jill Pell decided to "determine whether parachutes are effective in preventing major trauma related to gravitational challenge," utilizing prominent sources to analyze the data available, sans any actual randomized trial. Their conclusion is an argument I've heard against evidence-based medicine many times now, but never quite so succinctly as this:

As with many interventions intended to prevent ill health, the effectiveness of parachutes has not been subjected to rigorous evaluation by using randomised controlled trials. Advocates of evidence based medicine have criticised the adoption of interventions evaluated by using only observational data. We think that everyone might benefit if the most radical protagonists of evidence based medicine organised and participated in a double blind, randomised, placebo controlled, crossover trial of the parachute.

- Kelly Hills
[ed: please welcome guest blogger Kelly Hills, student in the Alden March Bioethics Institute MS in Bioethics program and doctoral student in the AMBI joint degree program being "taught out" by Albany Med/UGC and UAlbany Department of Philosophy; Kelly blogs for the Women's Bioethics Project blog as well as keeps her own blog about 'academia as an extreme sport', chronicles of the [mis]adventures of an academic in training to work in bioethics. She is also working at AMBI in the Scholar slot and recently co-authored a Nature Medicine review essay on transplantation in the black communities of America. Welcome Kelly, who joins Stuart Rennie, John Robertson and others along with your editors.]

Do You Know the Mutton Man?

2007-03-26T12:56:00.000-04:00

For many years a team of researchers led by Esmail Zanjani at the University of Nevada at Reno have been trying to grow ‘humanized sheep’. Their goal is to create sheep that have organs such as the liver that could be transplanted into humans without being rejected.

To get xenograftable organs the scientists inject extracts stem cells from adult bone marrow into a sheep fetus while it is still in the womb. These cells are integrated into the developing fetus. Zanjani’s team has announced it has now made a sheep with roughly fifteen percent human cells. The sheep have a much higher percentage in their livers.

The goal of this form of genetic engineering is laudable. Produce transplantable organs. But the ethical objections are likely to be loud and heated.

The creation of chimeras is not something that has received sufficient attention and public debate. Groups sponsored by the European Union and the President’s Council on Bioethics have taken a look but the public is still not really tracking this issue.

Some animal rights activists are not going to like the idea of creating animals to harvest their parts. Some are going to find the risks associated with carrying animal viruses into humans ethically daunting. And many are going to give ‘mutton men’ are very high score on the ‘yuk’ scale.

Making animal/human hybrids makes sense. But, in this case those with ethical concerns are right. We need some international standards in place before ‘lambination’ becomes a standard part of transplantation.
-Art Caplan

South Carolina to Require Women View Ultrasounds Prior to Abortion

2007-03-23T12:22:00.000-04:00

South Carolina appears poised on the brink of approving legislation that will require women to view ultrasound images prior to abortion. While all three (yes, that's right, all three) abortion clinics in South Carolina perform ultrasounds to determine the age of the fetus, the law would require women to view the images, with the probable exemption of rape and incest victims.

Why? According to the bill's sponsor, Republican Rep. Greg Delleney,

She can determine for herself whether she is carrying an unborn child deserving of protection or whether it’s just an inconvenient, unnecessary part of her body and an abortion fits her circumstances at that time.

South Carolina law already requires the ultrasound, as well as doctor counseling of the age and development of the fetus, as well as alternatives to abortion. This is nothing more than a bald-faced attempt at intimidation and emotional manipulation of someone who is already in a vulnerable position.

The thing that baffles me the most is, what? You're going to suddenly see an ultrasound image and decide that no, all the reasons you have for an abortion have flown out the window, and really it's a great time to be a mother, hooray? Are we suddenly going to see social services increase in funding? Are we going to have outstanding health care, job retraining, free and good state-sponsored child-sitting services? Is South Carolina going to suddenly take away every single obstacle that exists to bearing and caring for a child, so that the only barrier remaining is whether or not a woman thinks this is the right time for her, without consideration to financial/economic concerns?

Yeah, that's what I thought.
-Kelly Hills

is there a case for Bible study in secular education?

2007-03-23T02:14:00.000-04:00

This week, Time's senior religion writer David Van Biema looks at whether or not there is a case to be made for secular education of the Bible and whether or not there is a place for Biblical literacy, especially in our high schools. Van Biema interviewed Boston University's Stephen Prothero, who gives one of the more convincing reasons why it actually would be a good idea to have this secular edudcation:

In the late '70s, [students] knew nothing about religion, and it didn't matter. But then religion rushed into the public square. What purpose could it possibly serve for citizens to be ignorant of all that?

The ignorance - ignorance that Van Biema notes is as problematic with self-described evangelicals as it is with anyone else - leads us to a place where people are unable to critically examine public policy platforms for their hidden religious agenda. This has been on my mind lately, given that a lobbyist for a large and influential religious group freely admitted to me and the students we were talking to that part of her job is to remove the religion from the policy she lobbies for - that is, she (and many people with the same job across this country) is specifically trying to advance her religious group's beliefs via secular language. It's a hidden agenda, one that favours secrecy to get what one wants, couched in language that tries to mask religious belief for social concern and looking out for the best interest in society. And we need to give people the critical skills to examine platforms for these hidden agendas - and without a familiarity in the religious texts that are driving the agenda, the goal seems lost.
-Kelly Hills

Genetic testing in the media spotlight

2007-03-22T15:22:00.000-04:00

The implications of genetic testing have gotten some high profile media coverage in the last week. NYT produced a package of multimedia content around Amy Harmon's Sunday article about a young woman's decision to get tested for the Huntington's gene. Here's a snip:

The test, the counselor said, had come back positive.

Katharine Moser inhaled sharply. She thought she was as ready as anyone could be to face her genetic destiny. She had attended a genetic counseling session and visited a psychiatrist, as required by the clinic. She had undergone the recommended neurological exam. And yet, she realized in that moment, she had never expected to hear those words.

"What do I do now?" Ms. Moser asked.

"What do you want to do?" the counselor replied.

"Cry," she said quietly.

Her best friend, Colleen Elio, seated next to her, had already begun.

Harmon reports that clinicians in the Huntington's field say they're seeing an increasing number of young adults stepping forward to be tested. I wonder if this is at all indicative of an evolving generational gap in how we look at genetics.

NPR also devoted some significant time to genetic testing this week. Wednesday's All Things Considered featured a report by Julie Rovner about efforts in Congress to pass a law against genetic discrimination by employers and health plans. The Senate has passed such a bill in previous sessions and President Bush has indicated a willingness to sign one. Rovner reports that it's now looking likely that the House will move forward on the issue. ATC also talked with Kathy Hudson from the Genetics and Public Policy Center and Hopkins about her support of the legislation. Hudson argues that genetic information will be vital to healthcare in the future, but the specter of discrimination is blocking the path.
-Greg Dahlmann

Survey says... you've come to the end

2007-03-20T21:50:00.000-04:00

A paper in the recent edition of PLoS Medicine proposes a radical idea: a computer might be better at making end-of-life decisions than a patient's family. A trio of researchers led by NIH's David Wendler created a "population-based treatment indicator" from already-published surveys of patient preferences in end-of-life cases. Wendler and company then compared the predictive accuracy of the indicator against that of surrogate decision makers in hypothetical situations. The result: the decisions made by both surrogates and the algorithm matched that of patients about 78 percent of the time. The authors hypothesize that as more specific data on patient preferences are added to the indicator formula, it could become even more accurate at predicting a patient's wishes than his or her family.

But if such a system were to show up in clinical settings -- and that, of course, is an enormous if -- would it really be used to shed light on patient preferences? Or would its real use be as a way of making family members feel better about their decisions? The authors suggest such a possible use: "This approach might help to relieve some of the burdens associated with making decisions for incapacitated patients, while allowing family and loved ones to retain final decision-making authority." The converse could also be true. What happens if a family's decision conflicts with the computer? Should the clinician tell them? Has the family made the "wrong" choice?

Scientific American has more on the "population-based treatment indicator."

-Greg Dahlmann

Upgrade now for longer-lasting lowered latent inhibition

2007-03-20T15:33:00.000-04:00

G. Pascal Zachary used some of the New York Times' ink (and bandwidth) this past weekend to toss together a whole bunch of ideas about enhancing human capacity for creativity. The piece is kind of all over the place, but he essentially sorts the many efforts into two general categories of assistance: computational and pharmaceutical. So far, the computer geeks have made the most explicit progress. They keep getting tripped up, though. Said one Intel researcher to Zachary, "We don't have a link structure for your personal stuff. We’re not getting at the content." Or to look at the challenge a bit differently, computer scientists don't have much experience hacking the human body (if only we came with an Ethernet jack and an API). But you know who does? That's right. Drug companies. Which prompts Zachary to ask, "Might we be heading, however fitfully, toward a new industrial age when Microsoft buys Merck to better compete with Google?"

Just think for a moment about that potential family of brands. Introducing extended-release, extra-strength Creativity XP -- from the people who brought you Windows ME and Vioxx!
-Greg Dahlmann

Bring Out Your Dead

2007-03-20T06:50:00.000-04:00

Gizmodo tells the story of this device, the dead and dormant remover, which is after 10 years really going to make its way into the Japanese streets. Supposedly. Where it will somehow sort out the people who cry out "I'm not dead yet!"

What Happens with Stem Cells After 2008? More of the Same.

2007-03-20T04:34:00.000-04:00

David Jensen, whose California Stem Cell Report remains the authoritative source for anything going on around stem cells in California, has been reporting on the proceedings of a stem cell conference being put on by Stanford and Burrell and Company. Several speakers have been apparently saying something we’ve been arguing for a while now--- regardless of who wins, the presidential election of 2008 is not likely to produce any major changes in what one speaker called the “bizarre patchwork” of state funding and regulation of embryonic stem cell research. While many stem cell advocates would like to see a set of uniform federal standards and a big uptick in NIH funding, the likelihood of either of those things happening anytime soon after 2008 seems increasingly remote. While a new president, especially a Democratic one, might well sign the bill President Bush has vetoed once and is threatening to veto again to expand the number of stem cell lines eligible for federal research support, that’s likely to be all that happens. A major increase in NIH funding for ESC seems unlikely—one speaker at the conference even raised the possibility that NIH might even try to steer money away from ESC research because of all the state and private money already in play. Even if there’s a sizeable increase in stem cell funding, it would only make NIH one funder among many, and not likely the biggest one at that. NIH would have to increase its ESC funding roughly by a factor of eight to be competitive with California’s budget, and that doesn’t even include the funding in play from other states and private donors. While Congress could independently pass a law preempting individual state laws and establishing a uniform set of ESC research standards, the odds of that happening are less than slim. There’s no clear national consensus around a whole host of issues that would have to be addressed in such a bill, and the possibility that Congress could unify itself around one approach seems too remote to contemplate. What seems likely to happen instead is more of what we’ve got now—more states weighing in with ESC funding programs of widely varying sizes (look particularly at what New York and Wisconsin wind up doing) and ESC research being heavily supported in some states and illegal in some others. There will be increasingly vocal debates over royalties and product pricing that will be resolved in a wide range of ways, and conflicts between the rules that apply to collaborating researchers located in different states. This “bizarre patchwork” is markedly less efficient and more administratively difficult than a single funding source and set of rules would be, but it’s an accurate reflection of conflicting and diverse public views about ESC that don’t show any sign of going away anytime soon.
- Jim Fossett, Director, States and Bioethics Program of AMBI & The Rockefeller Institute

Kill Him Quick, His Organs Are Souring

2007-03-20T04:22:00.000-04:00

Police in Southern California and the state Medical Board are investigating whether a transplant surgeon prescribed drugs to hasten the death of a 26-year-old patient in order to harvest his organs more quickly to ensure they would be transplantable. What the doctor is alleged to have done is wrong and, if proven, merits strict punishment.

The public needs to be able to trust doctors to make dying as painless and dignified as possible. And to trust that they'll follow patients' wishes about medical care at the end of their lives. That is why a proposed change in state laws governing organ donation is not a good idea.

Many Americans, while supporting organ donation, have doubts about whether they will receive appropriate care if they identify themselves as organ donors. The frightening story from San Luis Obispo was being joked about on a sports radio station in Philadelphia just the other day. The message: Don't sign an organ donor card or check your driver's license to be a donor because doctors may kill you to get your parts!

We agree with the 85 percent of Americans who respond in polls that organ donation after death is a good thing. Donation helps provide some redemptive value to death, makes grieving less burdensome for family members and, of course, saves lives. But causing death to maximize organ donation is violating all ethical standards governing organ procurement. Fear of this may cause people to revoke or not provide consent, and that jeopardizes thousands of lives.

Recently, a private but influential legal group, the National Conference of Commissioners on State Laws, revised the Uniform Anatomical Gift Act (UAGA), which is the model that many states have followed to legislate organ donation. The commissioners know there are too few organs available for those in need. Their proposal, which is under consideration by states, is that organ donation consent (on a driver's license, for instance) be allowed to override a person's living will, advance directive or even physician orders. The proposed language in the revision states, "measures necessary to ensure the medical suitability of an organ for transplantation or therapy may not be withheld or withdrawn from the prospective donor." What this means is that if you say you are willing to donate your organs, your advance directive, living will and physician's orders are in trouble.

The revised UAGA, which is under review by the California Department of Health Services and the state Legislature, in one fell swoop nullifies the advance directive of people who have consented to organ donation. If California and other states adopt the revised UAGA as written, advance directives will have to make clear whether the person gives more importance to organ donation or to directions about their end of life care. That is too much to ask.

People have clear opinions on their end-of-life care, including preferences for advanced life support and palliative medications, but also, organ donation. When making organ donation consent at a motor vehicles licensing office in San Jose, Los Gatos or Hollister, people are not asked whether the organ donation should nullify their living will. To assume otherwise makes no sense.

The commissioners may further revise their published recommendations to acknowledge their position that quality end-of-life care is as important as organ donation. They are thinking of adding language that organ-procurement professionals work with critical care physicians and families to try to find a course that promotes both excellent care as patients die and the opportunity to donate organs.

That collaboration is important, but it is essential that the line between caring for the dying and obtaining organs for those in need remain sharp and bright. One of the biggest barriers to obtaining consent for organ donation in California and around the nation is the fear that the consent will lead doctors to make end-of-life decisions based on what is best for organs rather than patients. That is what is troubling about the death in Southern California of Reuben Navarro. That fear should never become the law in California or any other state.
-Art Caplan [from San Jose Mercury News]

Evangelical Bioethics and the Web - washingtonpost.com

2007-03-17T13:39:00.000-04:00

That's the title of today's story in the Washington Post about Joe Carter, evangelical blogger read by zillions, and his role on in bioethics debates. The blog is lauded by mainstream religious blog beliefnet.com and ranks up there among awards for blogdom. Conservative bioethics folks are out in force in the piece (as usual) to support absolutely anyone who isn't liberal, and I get spun as loving the site for its window to the evangelical "world:"

"When you read it, you get the sense that this is someone who has thought this out," said Matthew Eppinette, assistant director of the Center for Bioethics and Human Dignity, an evangelical bioethics think tank in Illinois that hired Carter in 2005. At the time, Carter was based in Fort Worth, repairing computer systems on fighter jets by day and blogging by night. Eppinette read the blog and called Carter in for an interview.
Glenn McGee, director of the Alden March Bioethics Institute in Albany, N.Y., and editor of the mainstream American Journal of Bioethics, said he checks Carter's blog not for scholarly reasons -- "most people in this field don't read blogs and are incredibly luddite" -- but more as cultural research.
"I'll go to his site to see, 'What are evangelicals saying about [the sexually transmitted human papilloma virus]?' I think he's a good mirror of what people are saying; he's plugged in," McGee said.

Considering Consanguinity (Inbreeding)

2007-03-16T02:54:00.000-04:00

Writes our contributing editor Ricki Lewis:

In the Star Wars saga, George Lucas took great pains to keep Luke and Leia from kissing, knowing (when the audience didn't) that they were twins. Similarly, on the Young and the Restless, when newlyweds Billy and Mac discovered they shared a grandparent just seconds before they were to consummate their union, they backed away from each other in horror. Annulment followed.
gGenetics provides sound reasons for avoiding procreation with a blood relative. Consanguinity ("shared blood") can team up recessive genes inherited from shared ancestors, creating the curious situation of an otherwise extremely rare disorder striking more than one family member. Such families have led geneticists to many interesting genes - a search of the American Journal of Human Genetics for "consanguinity" in article titles yields nearly 4,000 hits. Within families, though, consanguinity can have tragic results. But for such personal behaviors as partner choice and having children, should outsiders intervene, even if their motives are to prevent suffering?
The "Ick" Factor
In a small, isolated town in northern Pakistan, a 10-year-old boy entertained crowds by stabbing knives through his arms and walking on hot coals - until one day at age 13 he jumped off a roof and died. At least six others in the community had the same strange pain insensitivity. Researchers studying the complexly connected families in the area discovered a mutation that blocks pain messages from entering nerve cells. DNA sequencing revealed that the errant gene had spread through shared ancestors.
A fictional victim of consanguinity is Calliope Stephanides, the hero/heroine of the Pulitzer-prizewinning "Middlesex", by Jeffrey Eugenides. The protagonist, raised as a girl, reached puberty and grew a penis - all because his paternal grandparents, isolated and frightened during wartime in a remote Greek village, united in their desperation. They were brother and sister.
The "ick factor" associated with consanguinity is perhaps why Patrick Stuebing and Susan Karolewski, the parents of four young children in Leipzig, Germany, recently made headlines. They, too, are brother and sister, and according to reports, two of their offspring have unspecified disorders. But Patrick was adopted, and didn't meet his biological family until age 23, when he and Susan fell in love. The government has placed three of the children in foster care and Patrick has already served one jail term, because incest is illegal. But sibling pairings are rare; more common are cousin couples. In the U.S. 24 U.S. states ban first cousin marriages. The birth defect risk for all types of consanguinity is about 8 percent, compared to 3 percent for all births.
Consanguinity to Conserve Resources
Genetics is only part of the inbreeding story. For Calliope's grandparents and for the German couple, love trumped DNA. In some times and places, consanguinity was actually encouraged, usually to keep resources within a family. Consider Egypt's Ptolemy dynasty. From 323 B. C. to Cleopatra's death in 30 B. C., the clan had one cousin-cousin pairing, four brother-sister unions, and an uncle-niece duo. Cleopatra herself wed her 10-year-old brother. Their pedigree (family tree) reflects this inbreeding. The term "pedigree" is from the French for "pie de grue", which means "crane's foot", because the typical chart widens with each generation, shaped like a bird's foot. The Egyptian pedigree resembles a ladder.
Marrying within the family to sequester resources persists. Today, 20 to 50 percent of marriages in some parts of the Middle East, Africa, and India are between cousins or uncles and nieces. In families unfortunate enough to keep their bad genes along with their wealth, results are heartbreaking. NPR recently ran a report, "Syrian Village Hobbled by Years of Inbreeding", about a community of 5,000 where 800 children have inherited a combination of blindness, mental retardation, and physical disabilities such as short limbs. The condition remains undiagnosed, but almost surely comes from more than 100 years of cousin-cousin marriages - encouraged to avoid paying a dowry. A teacher in the village is trying to attract outside attention to their plight, but he is outnumbered by those who do not wish to challenge "God's will".
Unknowing Consanguinity
Inbreeding undoubtedly occurs without people knowing it, especially in tight knit communities where few people leave or enter. This has happened with the Ashkenazi Jews, whose numbers plummeted so sharply during various periods of history that marriages of blood relatives were almost inevitable. Genocide has left a legacy of a dozen recessive disorders that are much more common among Jews than other population groups. But the Jewish people have done something about it. Thanks to genetic screening begun in the 1970s, the few cases of Tay-Sachs disease occurring in the U.S. today are notably not in Jewish people, in whom carrier-carrier couplings have been identified and steps taken to avoid the matching up of deleterious alleles. (The Law and Order: Special Victims Unit rerun on TV as I write this was wrong in portraying Tay-Sachs as a Jewish-only disease.)
The success of screening for Tay-Sachs disease carriers inspired a program that could serve as a model for other populations. The brainchild of an orthodox rabbi in Brooklyn who had lost four children to Tay-Sachs, Dor Yeshorim was founded in the early 1980s to test young people for the "Jewish genetic diseases". Results are stored in a confidential database, and when two people wish to marry, the information is unblinded. Couples who carry the same recessive disorder may alter their plans, either to marry or to have their own children. More than 100,000 people have been screened, and many families have avoided genetic disease.
So what should be done, if anything, to combat the health consequences of inbreeding? It might be a tough battle, since worldwide about 960 million couples are related, and know it. I'd vote for education - informing people of how and why marrying relatives sets the stage for disease - but not go so far as to disrespect long-held local customs and dictate who people can marry. Genetic medicine is largely about choice, and that should hold true for countering consanguinity.

South Carolina Learns from China About Organ Transplantation

2007-03-08T22:51:00.000-05:00

Are we now taking lessons from the Chinese about where to look for transplantable organs. And good luck to those who get organs from populations known to be rife with infectious diseases. Wesley Smith drew this to my attention
-Art Caplan

Asimov would be pleased

2007-03-08T10:35:00.000-05:00

South Korea has announced that they are drawing up a code of robot ethics, to prevent humans from abusing robots, and robots from abusing humans. Asimov would be so pleased!

While it's unclear if the code of ethics will follow Asimov's laws of robotics (an idea their convened panelists of scientists and sci-fi authors have not ruled out), Park Hye-Young of the Ministry of Information and Communication has indicated that a major concern is that people will be interacting with their robots like spouses, or become addicted to them (as many people appear to be addicted to cyberspace in general). And according to the BBC, "key considerations would include ensuring human control over robots, protecting data acquired by robots and preventing illegal use."

-Kelly Hills

Selling Bodies at UCLA

2007-03-08T01:17:00.000-05:00

Cadavers for sale at UCLA? That's the charge:

The Los Angeles County district attorney's office announced criminal charges today against two men who allegedly ran a cadaver-trafficking scheme at UCLA's medical school, capping a three-year investigation that led to the temporary closure of the school's body donor program.
Henry Reid, 57, an embalmer who was director of the willed-body program from 1997 to 2004, was charged with conspiracy and grand theft for allegedly funneling donated bodies to a middleman, who then sold them to others for profit.
The middleman, Ernest Nelson, 49, was charged with conspiracy, grand theft and tax evasion. He has acknowledged cutting up about 800 cadavers and selling them to large medical research companies, including Johnson & Johnson; Nelson says the school authorized the sales, but UCLA officials say he was acting on his own.
Both Reid and Nelson were arrested today by UCLA police and are being held in lieu of $1 million bail each. Neither man could be reached for comment. They could be formally arraigned in a downtown criminal courtroom as early as Thursday.

-Art Caplan

Baby Drop-off Zone

2007-03-03T19:09:00.000-05:00

Italy has made a policy matter of creating hatches for people to abandon their children, on what the Family Affairs Minister describes as the "modern-day foundling wheels" plan. Better lives for the children in many cases of course. But the process and its broad adoption (no pun intended) begins to edge toward sanctioning the abandonment of children by those who should be required to put them up for adoption, and the fact that often such parents would (ala the New Jersey Dumpster Baby Epidemic) literally leave their children to the elements or kill them outright doesn't change that reality. These "windows of mercy" are a poor substitute for public assistance to poor parents.
[Hat tip: Bill Soucy, Mac Genius and the Brains of the AMBI Computer Network]

further details on how not to procure organs

2007-03-03T04:05:00.000-05:00

The LA Times has a follow-up on the organ procurement/transplant case that Ina's Sporula mentioned a few days back. Some intrepid soul at the paper decided to request the originally referred to report via the Freedom of Information Act, and received a 76-page document from federal investigators that reads like a litany of 101 things to not do when procuring organs for transplant.

As more comes out about this case, it's likely that the transplant surgeon will be the one made an example of, the over-zealous doctor that pushed too far. It is, after all, a nightmare scenario I hear repeated as the basis for why so many people are not organ donors, even though they would want an organ transplant themselves if it were necessary. But what is so interesting, in a "if you can't be a good example you'll be a horrible warning" sort of way, is reading the summary of the full report in the LA Times and realizing how many medical personnel (nurses and doctors) were present in the room, uncomfortable with what was going on, and said nothing until days, days, later. This seems a much more systemic problem than one over-zealous surgeon, to something endemic within the culture of the hospital itself.
-Kelly Hills

A Hostile Environment for Documents:Why is the EPA's Library Being Decimated?

2007-03-02T21:45:00.000-05:00

In The Scientist I argue that the destruction of huge amounts of material at the EPA is not only unwarranted it is downright dangerous:

Like most US agencies charged with the oversight of the public's health, the Environmental Protection Agency (EPA) relies on accumulated wisdom as it navigates new and varied problems. So imagine the information it stores at 27 libraries: books, journals, reports, and documents numbering in the millions. According to agency statistics, in 2005 EPA library staff fielded more than 134,000 database and reference questions and distributed tens of thousands of documents to researchers and the public. The library is the institutional memory of the EPA.
Like most libraries, EPA libraries have not scanned most holdings into electronic format. So librarians and location- or specialty-specific repositories are important to the EPA and those who consume its information. You'd think that the agency responsible for, say, all clinical information on the effects of pesticides would do anything to keep those systems of information fully operational and to modernize. But in fact, the greatest environmental disaster of this decade may be the amnesia that the White House and EPA seem hell-bent on causing.
In February of 2006, the White House proposed cutting $2 million of the $2.5 million budget for EPA libraries. It is a huge cut to the libraries, but a blip against the $8 billion EPA budget. Incredibly, EPA did not wait for the budget to be approved, but instead began decimating libraries and trashing materials including at three regional libraries, a library for research on the effects and properties of chemicals, and its headquarters.
Senators Barbara Boxer, (D, Calif.) and Frank Lautenberg, (D, NJ) and associations representing thousands of EPA scientists, engineers and other staff cried foul, pointing to the fact that EPA shutdowns depleted reference materials that might be indispensable in an emergency. In the EPA's library, for example, are at least 50,000 one-of-a-kind primary source documents. The EPA's own Office of Enforcement and Compliance Assurance (OECA), said last year that the agency has failed to adequately maintain critical information and accessibility. OECA "fears that dispersal of [the libraries' information important to specific regions... and unique data on industrial processes and analytical methods] without proper tracking and access could undercut rulemaking and the ability to substantiate and support findings, determinations and guidance."
Representatives Henry Waxman, (D, Calif.), Bart Gordon, (D, Tenn.), and John Dingell, (D, Mich.), called on EPA Administrator Steve Johnson to stop the process and the General Accounting Office to investigate. EPA says it has stopped. But it has failed to make available a good plan for access to stored materials. They just disappear. How? I find an image from the 1981 film Raiders of the Lost Ark helpful: scientist Indiana Jones is told by bureaucrats that the ark is being examined by "top people" and will be available later. The camera fades to the ark fading into a massive warehouse. EPA ought not to become a shell, or shill, manipulating its identity or even recreating itself as every administration relegates to "top people" the documents that are necessary to ensure public health.
Some have alleged that the EPA is shredding not just journals and documents, but files that may specifically damage the agency. No one has provided any proof of that yet, but if it turns out to be true, it may deserve a column of its own. My point is more mundane, but perhaps just as important. We just have to look to history to see the effect of destroyed libraries. Take the loss of the Library of Alexandria, founded in the 3rd century BC, to fires likely set by scoundrel politicians...

[Read the Rest of this essay by clicking here for The Scientist March Issue]

Grey Goo

2007-03-02T02:20:00.000-05:00

The regulation of nanotechnologies—products and processes which incorporate extremely small particles ( a nanometer is one billionth of a meter, and nanoparticles are usually described as those between 1 and 100 nanometers) – has popped into public visibility in the last year or so. Both federal and state governments have been promoting these technologies in a big way over the last several years—the multiple federal agencies that are part of the National Nanotechnology Initiative (NNI) have been spending close to a billion dollars a year to research and promote these technologies, and states have been avidly chasing the firms which do the research and produce the products. Products have been moving out of the lab and into the marketplace at an increasingly rapid rate—inventories maintained by the Project on Emerging Nanotechnologies at the Woodrow Wilson International Center for Scholars currently list over 300 products incorporating these particles and that’s almost certainly on the low side.

All of this development has happened without much attention to the consequences of large scale use of these products, particularly in the short run. Beginning with a book by futurist Eric Drexler in 1986 and continuing through a widely cited article by Bill Joy and Michael Crichton’s book Prey, there have been vivid dystopian scenarios of self-replicating nanobots covering the earth with “grey goo” which could annihilate the biosphere. More prosaically, there appears to have been little systematic effort to assess the environmental and health risks associated with nanoparticles. Recent reports by the British Royal Society and a distinguished largely American group which published an article in Nature a couple of months ago have noted this lack of attention. There is at least some evidence that these risks are not trivial— substances which are not reactive at larger scales may be so at nanoscale, but other factors besides size also come into play. The Nature article calls for a fifteen year research program to reduce the current uncertainty about the consequences of widespread use of these products.

The immediate question is what we do in the meantime. There have been calls for a moratorium on nanotechnological products until risks are better understood, but this seems unlikely to materialize. Federal regulatory agencies such as the FDA and EPA are beginning to regulate nanoproducts under their existing statutes—the EPA just announced a couple of months ago that that manufacturers of products which use nanosilver products to kill bacteria in such products as washing machines and shoe liners must now submit data showing these products have no adverse environmental or public health impact. How readily nanoproducts can be regulated under existing law isn’t really clear---some commentators have noted regulatory holes in the statutes authorizing federal action, which were written before nanomaterials came on the scene. Given the holes in the science and in the law, it may be a while before we have a coherent federal regulatory framework in place. It’s not difficult to imagine a scenario in which legal challenges limit federal agencies’ ability to regulate nanoproducts and Congress is reluctant to support expanded funding for risk research, increases in the budgets of regulatory agencies, or changes in regulatory legislation.

Given this potentially slow pace in Washington, it wouldn’t be surprising if the first serious attempts to regulate nanotechnologies come from state or even local governments. In fact, it’s already started---Berkeley, California has recently adopted an ordinance which requires users of nanomaterials to file an inventory and safety plan similar to those required for users of hazardous materials. This isn’t the first time local governments have acted to regulate cutting edge technology—since the late 1970’s, for example, anybody wishing to use recombinant DNA within the borders of Cambridge, Massachusetts has been required to secure a permit from the city health department that covers a wide range of biosafety issues. States typically have broad constitutional powers to protect the public health, and there may be fewer legal obstacles to state or local action than to federal. Even if federal action proceeds relatively rapidly, individual states or localities may wish to adopt additional health and environmental protection requirements for nanoproducts, and it’s far from clear that these would be pre-empted or invalidated in any way by federal regulatory action.

The major determinant of the future of nanoregulation in this country is likely to be political. The Cambridge ordinance had its origins in a rancorous spat between the city and Harvard in which the university basically blew off residents’ concerns. Similar conflicts over nanotechnology products are a real possibility. While “grey goo” scenarios are implausible, the real scientific uncertainty about how safe nanoproducts are, as well as the increased activism around these issues by environmental groups, may make some communities cautious about the conditions under which they allow research or manufacturing using these materials within their borders. Public opinion polls show considerable distrust of the ability of industry to regulate itself and support for governmental regulation of nanoproducts. Nanotech industry groups claim to get this, and have promoted “responsible development” of nanotechnology with appropriate acknowledgement of risks and uncertainties. What this means in particular circumstances, however, is still very much an open question.
- Jim Fossett, AMBI/Rockefeller Institute Federalism and Bioethics Initiative
(With thanks to Summer Johnson)

Sporula on Organ Donation

2007-02-28T19:29:00.000-05:00

Ina's blog comments on a case of transplantation:

Well, I used to make up a case like this one about Kaiser transplant surgeons to get students to think carefully about the consequences of various facets of our organ donation system and alternatives (e.g. paying donors, etc). People (see for example Art Caplan’s position have often suggested that our current system (donation rather than payment) would prevent people from pushing friends/relatives/patients over the “brain-dead” boundary, but I’ve never been convinced, and now, here’s potential proof.
I have to say that I always assumed these cases would be found in developing countries and specifically that subset of developing countries where medicine isn’t well-regulated. It just goes to show you huh? (Insert Annie Oakley singing “anything you can do I can do bettttteeeeerrrrrr!”). Of course, I don’t want to prejudge this particular doc, but I have to say I doubt that this is the first time a U.S. transplant surgeon’s pushed things a little - just the first time that someone might have gotten caught…

For more of Ina's Sporula, whatever that is Ina, because it is interesting stuff, go here.

HPV Fights - Once Again, the States Decide!

2007-02-28T19:20:00.000-05:00

It ain’t over, said Yogi Berra, until it’s over, and the debate over what to do about Gardasil, the vaccine developed by Merck against the strands of the human papilloma virus (HPV) that cause cervical cancer. is still raging hot and heavy in many states. While the vaccine has been recommended for routine use by the CDC’s vaccine advisory committee and a number of professional groups such as the American Cancer Society and the American Academy of Pediatrics, the question of whether states should mandate the vaccine for school girls has been more controversial. Only one state—Texas—has formally mandated the vaccine to date, but over 30 states are reportedly considering some form of mandate.

As frequently happens in politics, the debate over mandating has in many places been about things other than the merits of the vaccine. HPV’s are sexually transmitted, and many conservative groups have complained that mandating the vaccine will encourage sexual activity and promiscuity. Other groups have complained about the intensity of Merck’s campaign to sell the mandate. The company has mounted strong lobbying campaigns in favor of a mandate in a number of states and has financed a major cervical cancer awareness and pro-mandate initiative by Women in Government, a advocacy group of women state legislators. Merck is charging $360 for the three shot vaccine regimen, and there have been charges that the company is trying to secure market share before a competitive vaccine being brought out by GlaxoSmithKline hits the market later this year, which will almost certainly cause the price to come down. The backlash against these activities has been so severe that Merck has announced it is terminating its lobbying efforts.

All this political flap seems unfortunately likely to divert attention from the vaccine’s merits, which seem considerable. Cervical cancer is not the problem in this country than it is elsewhere, because most women get regular PAP smears, but there are some 10,000 new cases a year and over 3,500 fatalities. The CDC’s most recent prevelance estimates (published in this week’s JAMA) for HPV infection detected the two strands of the virus that cause cervical cancer in over two percent of the women in the United States, with an additional 10 percent or so being infected with other “high risk” forms of the virus. Gardasil also vaccinates against two “low risk” HPV’s which are associated with genital warts and other low level cervical changes. Overall, HPV infection and cervical cancer are most common among low income women who may have trouble accessing or affording regular PAP smears. In clinical trials, Gardasil demonstrated close to 100 percent efficacy in preventing the precursors of cervical cancer, and side effects appear infrequent and mild.

The case for mandating is weaker, but still reasonable. Typically vaccine mandates take a longer time to roll out after there has been more experience with the vaccine in the general population and side effects or other problems have had time to emerge. The professional groups that have endorsed the vaccine have typically not taken a position on mandating. The vaccine is currently very expensive, but the price may come down once the competing vaccine hits the market. Federal vaccination support programs typically cover younger children, but not the teenagers and young women who are also major targets for a vaccination effort, so insuring adequate access remains an issue. Absent a mandate, access to the vaccine will remain limited to those who know about it and can afford it, which are not those groups at greatest risk who need the vaccine the most. Past mandates do appear to have been relatively successful in expanding vaccination rates and equalizing access to vaccines, but additional funding would be required. Medicaid and CHIP are obvious possible funding sources for girls under 18.

What seems likely to happen is that different states will do different things—some states will mandate with a variety of different conditions and some will not, and there will be significant disparities across the states in who does and doesn’t have access to the vaccine. I know we’re getting boring about this, but what happens in state capitals is more important than what’s happened in Washington.

Jim Fossett
AMBI/Rockefeller Institute
Federalism and Bioethics Initiative

The Definitive List of Undergraduate Internships in Bioethics Around the Nation

2007-02-26T03:03:00.000-05:00

For years students have wondered where they could study bioethics for the summer. If I had a nickel for every time a college student asked me where she could go to do some summer research in the field, I'd have a lot of nickels, or whatever the expression is. Well, Paul Root Wolpe changed all that with his new survey of undergraduate summer internship programs in bioethics for undergraduates, which you can download here as a PDF.

In Retrospect: What the Media Did Wrong in Covering Ashley X

2007-02-26T02:48:00.000-05:00

She is the 9 year-old who will "never grow up," and Art Caplan does an excellent job for the Poynter Institute in pointing out what the media can do to cover stories like this better - and what went wrong in this social debate that the media could have fixed. It's a great interview with lots of links - definitive if you are searcing for the comprehensive source of coverage of Ashley X's case.

Ten Years Since Dolly...

2007-02-26T01:19:00.000-05:00

Art Caplan writes in MSNBC:

Ten years ago today, the birth of the first cloned mammal - a sweet-faced sheep named Dolly - was announced to the world. Her creators, a team of veterinary scientists at Scotland's Roslin Institute, approached their landmark scientific achievement with a sense of humor: They named the lamb after Dolly Parton. (The DNA they used to clone her came from a breast cell.) Much of the rest of the world, however, was not amused.
Dolly's creation set off a storm of fear, confusion, misunderstanding, pandering and double-talk that culminated in the greatest fraud ever perpetrated in the history of biomedicine - the false claim that a South Korean scientist had cloned human embryos and made stem cells from them.
Dolly's creators were so giddy because they had demonstrated it was possible to reactivate all the genes in a cell taken from an adult mammal. They made a grown-up cell act like a kid again.
At the time, almost no scientist thought cloning was possible from the DNA of adult animals. Cloning had already been accomplished in tadpoles and by using embryonic cells, but science dogma held that once a cell had grown up and become specialized - by turning into a skin cell, a hair follicle or a breast cell, for instance - its DNA was through. There was no way to get that DNA to switch on again and act like an embryo.
What intrigued scientists about Dolly had little to do with what captivated the rest of humanity. The main preoccupation of religious, philosophical and social commentators 10 years ago was how rapidly Dolly would be followed by the creation of a human clone who would destroy the world.
So, where are these clone armies?
In the weeks following Dolly's announcement, mainstream media reports were full of irresponsible speculations by all sorts of experts and "authorities" on what Dolly's birth meant for you and me.
Some worried that cloning would lead fiendish dictators to create armies of clones bred for war. Others fussed that the rich and egomaniacal would seek to create clones of themselves so they could live forever. Still others warned that clones would serve as mobile spare-parts farms. Need a liver or a kidney? Just carve out your clone's and off you go, good as new. And what about cloners resurrecting the dead from bits of DNA found at museums, graveyards and churches?
All this nutty speculation led to a worldwide panic about biological engineering as seen before only in Hollywood films from the 1950s such as "Invasion of the Body Snatchers" and "Attack of the 50 Foot Woman." Presidents, popes and potentates across the globe went bonkers warning us against human cloning. Laws forbidding human cloning - which were premature at best, since the chances of producing a human clone hard on the heels of Dolly's birth were, as I tried to point out at the time, next to nothing - were proposed left and right.
Then it got truly scary. Because that's when the cavalcade of cloning kooks came out.
Bring in the clowns
The parade was led by the felicitously named Richard Seed, a physicist who announced in December 1997 that he intended to clone the first human being. Anchors and talking heads everywhere granted Seed a worldwide platform to babble on about his plan to use cloning to bring humans closer to God. Seed was soon followed in his "I will clone and you cannot stop me" mania by Kentucky fertility expert Panayiotis Zavos and maverick Italian fertility doctor Severino Antinori, best known for helping a 62-year-old woman become pregnant. For a time these two teamed up and proposed setting up a cloning operation on a boat in international waters.
These characters did their best to convince the world that they held the bottle in which the genie of cloning resided. The media and politicians lapped it up. But this gaggle of kooks paled in comparison to the arrival of the group forever linked in the minds of the world with human cloning: the Raelians.
The Raelians, a religious cult that believes extraterrestrials used genetic engineering to create life on Earth, secured a worldwide audience with their cloning threats.
In 2002, Dr. Brigitte Boisselier, a college chemistry professor, Raelian bishop and CEO of the sci-fi start-up Clonaid, along with Rael, the founder of the Raelians and a former French pop singer and race-car aficianado, announced to an aghast world press that Clonaid had successfully cloned a human being. Boisselier said that the mother delivered by Caesarean section somewhere outside the United States, and declared that both the mother and the little girl, Eve, were healthy.
Despite loads of fanfare and claims of a slew of additional clones, no DNA proof was ever offered up.
Why anyone would think that a chemist with a bad hair-dye job and a cult leader parading around in a Starfleet uniform had the scientific know-how and skills required for human cloning was not apparent. However, these two took over the airwaves for weeks. They also appeared as witnesses testifying about cloning in the U.S. Congress and before the National Academy of Sciences!
A perfect storm of nutty professors, kooky cultists and shameless self-promoters used the media to get their screwball message out: Human cloning was not only possible, it had been done and the frightening power of cloning resided perilously in the craziest hands on the planet.
Mainstream madness
Things were not going all that much better in mainstream science. The scientists who created Dolly got into a nasty dispute over who deserved credit for her creation.
Dolly herself got sick, was euthanized and wound up stuffed for a display at a museum in Scotland in 2003. Scientists worldwide managed to clone other species including mice, goats, pigs, cattle and rabbits but at a terrible price in terms of stillborn, sick and deformed animals.
But the biggest blow - to scientific integrity - was still to come. Scientists quickly recognized that cloning might be a useful way to take advantage of the embryonic stem cell discovered shortly after Dolly's birth, but with much less fanfare. Cloned embryos made from adult human cells might hold the key to technology capable of replacing worn-out or damaged human cells.
The drive to be the first to show that cloning human embryos was possible led to dubious announcements by a few scientists that they had made cloned embryos. The cloning race culminated in the whopping lie told to the world by South Korea's Hwang Woo-suk. In a fabricated paper published in May 2005 in the prestigious journal Science, he claimed to have cloned many human embryos and extracted stem cells from them.
Those who hated the prospect of any form of cloning - animal or human - and those who were morally horrified by the prospect of human embryonic stem cell research, including President Bush, Sen. Sam Brownback, R-Kan., Rep. Dave Weldon, R-Fla., and Rep. Ron Paul, R-Texas, among others, proposed bills that would stop the strategy of "clone and kill." The tactics, incredibly, worked.
Public funding for embryonic stem cell research foundered on the legacy of fear built by nuts, the media, scientists bickering amongst themselves, fabricators and politicians who played the cloning card again and again.
So where does this dismal history leave cloning today?
Animal cloning has proven incredibly difficult. There are noises being made about introducing meat or milk from cloned animals into the food supply, but the economic practicality of that happening given how hard and expensive it is to clone animals makes this all talk. The huge risk of creating a dead or deformed baby has put all talk of human cloning firmly on the back burner. The fact that there still has been no successful cloning of a primate using Dolly-style techniques shows just how hard - or maybe, impossible - human cloning is.
Cloning for research is still of interest to scientists around the world, but no one has been able to make it work reliably.
The place where cloning continues to thrive is in Hollywood, TV and science fiction. There, clones are still mined for body parts, mad scientists can still gin up a possessed clone kid and evil dictators still create their clone armies to conquer the galaxy.
Ten years after the announcement of Dolly's creation, cloning is a subject that still scares most of us when all it really is is a new, very difficult, very inefficient and very tricky way to make a lamb.

Promoting Male Circumcision for Hindus

2007-02-25T01:15:00.000-05:00

This blog has dealt with ethical questions about male circumcision and HIV before, but somehow the assumption crept in that this is a distinctively African controversy. Maybe it was because of the high HIV prevalence in that part of the world. Maybe its was because of the longstanding interest -- especially among anthropologists -- with circumcision rituals in Africa. Let us make a confession here: the author of this post has co-authored an article in the Journal of Medical Ethics called Male Circumcision and HIV Infection: Ethical, Medical and Public Health Tradeoffs in Low-Income Countries. And it too is guilty of identifying the issue a bit too much with sub-Saharan Africa.

Whatever way this came about, the ethical questions concerning the promotion of male circumcision to lower risk of HIV transmission have to embrace India. For one thing, the number of new HIV infections has rising in India dramatically over the last years. For another thing, male circumcision is a highly charged matter, both politically and religiously, when Hindus do not traditionally circumcise and Muslims do.

An article in the Times of India today gives an indication of just how sensitive the question is. The National AIDS Control program in India will not even think of conducting randomized controlled trial to test whether being circumcised lowers a man's risk of getting HIV infected: not because three such studies have been done before, but the whole idea seems too hot to handle. When Richard Feachem, Director of the Global Fund to Fight AIDS, Tuberculosis and Malaria, said that he expected that Hindus would increasingly have more HIV infections because their men do not get circumcised, his inbox was inundated by hate mail. The issue is inseparable from the larger relationship between mainly Hindu India and its Muslim neighbor and rival, Pakistan. The foreskin has geopolitical significance.

The question is: when circumcision acts as a religious/cultural marker from neighboring groups, will men still agree to do it, to reduce their chances of getting HIV? A World Health Organization/UNAIDS meeting in Switzerland on March 6 is set to tackle these tradeoffs between cultural identity and public health, among others. When HIV infections globally are increasing, vaccines are probably at least 10 years away, and the once-promising microbicides are crashing and burning, the ancient practice of male circumcision is strangely enough carrying the torch in the fight against HIV/AIDS.
-Stuart Rennie