TalkWhat Role Will You Play in the Genomic Revolution?
Not surprisingly, the genomic revolution has a lot of medical professionals who aren’t geneticists* concerned about who’s doing what, and how. This is an important discussion that we should all be having, and it’s captured in what I hope will become a larger discussion begun at Grand Rounds, Volume 3, No 33 and Eye on DNA.
The Blog That Ate Manhattan writes:
Eye on DNA interviews the CEO of Genomic Healthcare Strategies, and gives us a glimpse at a possible future. I was fine till I read the list of new stakeholders in this area, and realized just how much of the trend in health care is to take it out of the hands of physicians and put in anywhere else it will make money in a direct-to-consumer market. I wonder where the ethics in this brave new world will come from?
Eye on DNA responds:
What I’d personally like to see is greater collaboration between physicians, genetic counselors, and patients aka consumers to define a personalized approach to preventing and treating disease. It doesn’t have to be one camp against another. And, in fact, if we persist in keeping secrets from our healthcare providers because we’re afraid of their disapproval or if physicians want to deny services to their patients simply because they are not the conduits, we will create an environment in which useful information is lost.
I would add: Just as physician practices and other businesses devoted to healthcare have ethical responsibilities and regulations to enforce them, direct-to-consumer companies that provide medical services (such as my company which provides genetic counseling and genetic testing) also have ethical responsibilities as clinical providers. Regulations for these types of companies are under quick development (see the GAO’s action last year) — and I expect they will continue to evolve as the landscape of the genomic revolution evolves. Rome wasn’t built in a day. Neither was our current medical system.
If our current medical system can’t adequately address the current landscape (fast-evolving, detailed genomic information and applications), then the system needs to be adapted to provide for the best interests of the ultimate stakeholders: the patients. And all parties who care about the ultimate end goal — better medicine, personalized medicine — should participate in this discussion and work together with the governmental bodies involved and the Genetics and Public Policy Center.
It shouldn’t be a territorial issue, but when money is involved, it inevitably raises this issue. What’s the difference between a direct-to-consumer company that provides medical services and a for-profit physician group that provides medical services?
*Guess how many licensed geneticists and genetics professionals there are in the U.S.?
Technorati Tags: genomic revolution, ethics, direct to consumer, direct access testing, genetic, genetic counseling, genetic testing, personalized medicine
May 20th, 2007 at 8:47 am
I have collected abstracts from the 1970s on showing that autism is an autoimmune disorder to the highest degree, and that advanced paternal age of the mother’s father at her conception or paternal age at the birth of a child puts that child at risk for autism, schizophrenia, auto immune disorders, Alzheimer’s, type 1 diabetes, certain cancers, MS, etc. My role is to keep pointing out that it is wise for men to father their children by the age of 33 to prevent serious de novo genetic disorders in their children or in future generations. Of course it is a very hard sell because no one believes that there is a male biological clock and that advancing paternal age is closely related to new genetic disease.
May 21st, 2007 at 10:55 am
Hi Leslie, thanks for your comment. There has been increasing discussion in the past few months about a correlation between paternal age and autistic-spectrum disorders. I have a few comments, links to coverage and other bloggers here. Yes, I think there is increasing recognition about whether and how paternal age figures into de novo mutations.