Great story in today's NYTs about ten people who agreed to have their DNA mapped and posted online for the international community to see. The idea is that dispensing with privacy concerns will speed along genetic research. The more genetic information made publicly available, the faster research will progress. The project hopes to have 10,000 participants.
In exchange for the decoding of their DNA, participants agree to make it available to all — along with photographs, their disease histories, allergies, medications, ethnic backgrounds and a trove of other traits, called phenotypes, from food preferences to television viewing habits.
It will be interesting to see the social consequences of making public all of this personal information. GINA prohibits health insurers and employers from discriminating against individuals on the basis of their genetic profile. But participants could be denied life insurance, long-term care insurance or disability insurance, with no legal penalty. I was not aware that GINA did not cover those things. What if a person predispositioned to diabetes makes public her preference for a chocolate bar a day? Does she risk being denied long-term care insurance because she could be said to be bringing on the disease through her actions?
Because of risks like this the first ten participants were required to have the equivalent of a Masters degree in genetics. However, a person can have their entire genetic code sequenced for as little as $5,000, so these issues are going to become more of a concern as more people seek to acquire this information (this cost over $1 million two years ago)
I can just imagine a new Facebook application "MYgENOME" where you can compare your genetic code to others in order to find out who your are most compatible with. Americans simply do not value privacy. If you aren't willing to have a public persona, the first question asked is "What are you trying to hide?" While we are not sure what the consequences of publicly posted genetic code will be, maybe we should proceed slowly in order to properly assess the risks.
On the other hand, since genetic technology has been creeping along so slowly, maybe the risk is worth it. As one Doctor involved in a similar project said, “To truly understand humans we need a huge data set of 10,000 complete genomes, and the data needs to be open to everyone for interpretation.”
Why not create these "public" genetic databases, but require that in order to access the information you have to be a member of the International Geneticists Association. (I'm not even sure that that exists but, something like that.) I mean, does every Joe Schmoe really need to know about all of your family history and habits? I think not.
3 comments:
I would wonder with the knowledge of a person’s daily habit attribute to a person genetic makeup is the economical standing factor in as well Let’s say a person has a history of diabetes in their family I am sure it makes a big difference if they can afford to purchase fast food over vegetables and fruit. Obviously one is cheaper and more readily available. The privacy issue is questionable when you make your future health life so accessible to everyone. Now what happens when the person’s circumstances have changed? I know their genetic makeup does not change rather the reaction from certain changes will have a different result. Presently, all participants have to have a master degree in genetics. Is this done to make sure that everyone involved fully understand genetics? I wonder how an “average” person will freely give their genetic information and over time will the gene pool become more diverse and included persons that have an eight-grade education and persons that are heads of states. I would feel so vulnerable not necessarily to insurance companies rather to the world for my genetics are available for everyone to see while only a “certain” amount of person would understand me truly more than I understand myself.
KIRK
Although the comments on lifestyle choices and personal responsibiilty for one's own health in this post are very interesting issues, they have no particular relevance to the issues addressed in the Genetic Information Nondiscrimination Act (GINA). What is also very interesting - and relevant to GINA - is the presumption that the disclosure of genetic information should be a wholly private and personal choice.
Opponents to the application of GINA to to the life insurance market believe it is essentially unfair for a potential policy holder – particularly one seeking a very high-dollar policy - to withhold information about the risks they are asking to be insured. The concept of underwriting life insurance is to replace lost income after death, not to cover medical expenses. Is it not cheating for someone who has been tested and knows they have a genetic disposition for a life-shortening condition to withhold that information when taking out a $50 million life insurance policy? If a life insurance policy can be nullified because an individual fakes information regarding family history or falsifies the results of a physical exam, why would it be acceptable to withhold knowledge gained from a genetic test? Are the issues of financial compensation during life the same as financial compensation after life?
By definition, social consequences can be systemic and 'societal' and not limited to peeping from Joe Schmo.
PJM
In response to your thoughts about a Facebook-esque website, I can only imagine that one day there will be an online dating service that allows people to view and compare genetic information. Is that not the human way? Is it not instinctual to look for tall, muscular men with all of their hair and good eyesight, and women with characteristics related to child-bearing? This might be the next generation of dating and mating. I could see many Americans viewing this type of service as a fountain of opportunity. I don't necessarily agree with it, but I bet "G-Date" could land a huge market.
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