May 23 2010
I want to control my own genetic information
I posted a letter to the editor in today’s San Diego Union Tribune regarding the Pathway Genomics efforts to sell their personal genomics kits, advocating that people have access to their own genetic information. If they want to turn this over to their doctors and insurance companies, that’s fine. But they should be required to do. We should be able to access our information anonymously.
Art Caplan, director of the Center for Bioethics at the University of Pennsylvania, posted a thoughtful letter to editor to the Denver Post saying the opposite – that individuals should only use hospital-based genetic counseling. Here’s a summary of our differences:
1. He says genetic counseling is a must, while I say it is an option.
2. He says that the individual must insert their genetic information – for now and forever – into their medical record. I say that this is an option. I say that the individual should have the right to access their genetic results anonymously, independently of any other authorities intervening.
3. I acknowledge the risk of poor test information, lack of ethnicity-specific results, and risks of drawing broad results from scant data. However, the best way to mitigate these risks is openness – and public understanding. Closing off this information to a “walled garden” accessible only to the “priests” of medicine is not going to improve the situation.
4. This is a little like the controversy between Wikipedia and Encyclopedia Britannica. He’s advocating the Encyclopedia Britannica approach, and I’m advocating the Wikipedia approach. Both can coexist, but what I see happening is people trying to legally inhibit the Wikipedia approach, saying the people must use the expertise of the encyclopedia. I say, let the reader decide. We have wonderful open access information from Genopedia - the question is whether individuals will have the right to match their personal genetic information with what is online. Can we do this anonymously and under our own control, or do we have to submit our information to the medical record, insurance companies, and doctors?
5. I think that we need to be frank about the risks of turning over your genetic information to the patient’s physician and insurance company. Exposing ones genetic information – permanently and indelibly – is not a step to be taken lightly, particularly in light of the explosive growth of the electronic medical record and break-neck efforts to integrate these records into the National Health Information Network. I’m sorry, but based on 35 years experience in managing medical information, I don’t think that patient’s privacy and confidentiality are being fully protected.
I’m sure that there are more than a few medical associations are bouncing around the halls of Congress now, lobbying to make genetic information their turf, creating a walled garden of information that only they control. “People aren’t able to understand this information without our interpretation, so we’ll pass laws requiring you to pay us to interpret it for you.” Just like lay people weren’t qualified to read the bible back in the time of Gutenberg.
Thanks, but I want the choice to decide whether I want to pay hospitals for their interpretation. Maybe there is some other group that I feel more comfortable using, one that earns its reputation by doing a better job of counseling and making information available. If my local hospital genetics program is best, so be it. If I prefer the Mayo Online, 23 and Me, Genopedia, or my own Google Scholar searches, that’s my choice, not theirs.
And no thanks, I don’t accept your requirement that I am required to insert my genetic information in your electronic health record in order to see my own genetic information. Let’s put in my walled garden, and I’ll invite folks in according to my choosing.
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