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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I find this subject fascinating esp. since I just finish the book Marker by Robin Cook where a managed care "business" was killing off any of their patients that were positive for any of the markers for a disease. Could this really happen? They say that truth is stranger than fiction. I hope not in this case but anything is possible. Perhaps they won't kill you, but it is certainly a concern that marker positive people would be discriminated against. After all it would make good "business sense" to pick the healthy folks.
- by Joyce on Mar 22, 2007 at 11:31 PM | link
I think that genetic testing is a great idea. We live in a time where technology is abundant and advances are made every day. People have a right to know. Especially in the case of Huntingtons, where it having the gene could influence ones decision to have children.
- by Ashley M on Mar 23, 2007 at 2:05 AM | link
Beyond genetic testing for huntingtons is preimplantation genetic testing of embryos which can practically eliminate the risk of passing the fatal disease on --
however when the parent does not want to know if they are even a carrier we have a non-disclosing option where they never find out if any embryos was diseased
read more at http://docinthemachine.com/2007/03/21/pgd1/
- by Steven Palter, MD on Mar 23, 2007 at 2:42 AM | link
I can understand genetic testing in the sense of wanting to know one's predispositions. That is so, especially when considering child-bearing. However, from a personal point of view, I would not want to know my genetic predispostions. For me, it would possibly be like looking forward to an early grave. I think that there would be a difference in quality of life whether or not I knew what I was in store for. One way to look like it as take advantage of the here and now. On the other hand, it could cause major depression and hopelessness.
There could be however an upside of testing early. It could allow for certain people to enter studies that will track progression of a disease before signs and symptoms are shown. With research, there could be huge advancements in stopping disease progression and/or a possible cure.
- by Trisha on Mar 25, 2007 at 10:07 PM | link
I think it's great that we have the technology that allows us to look at our genetic make up. For myself I don't know if I would want to know what diseases I am predisposed for. It brings up questions about whether insurance companies would misuse this information and not insure people that have tested positive for predisposition for a disease.
- by R Fultz on Mar 26, 2007 at 4:23 AM | link
I also think that this is good. I would be so scared to find out. This would be good if you are going to have children. I am scared that if I do know waht diseases I am predisposed to I might start having symptoms. I think just thought of knowing I have these markers might do a job on my brain. So this is good for some and not for others.
- by Melissa S on Mar 28, 2007 at 7:44 PM | link
Like every technological advance there are always pros and cons. I think genetic testing to determine what diseases you and your children,may develop could help alter ones' lifestyle. However, if this information came into employers or insurance companies hands the results could be devastating. What would stop an insurance company from rejecting a claim because it was a pre-existing disease? How about not getting hired because you are a health risk?
- by maberg on Apr 7, 2007 at 1:26 AM | link