March 22, 2007

Genetic testing in the media spotlight

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

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