I’m very interested in public policy and genetics. There are a number of threads that I was following along those lines. On the actual legislation I was watching the GINA efforts, and participating where I could. I was reading an article on the downstream effects of that today (Two Cheers for GINA, by McGuire and Majumder, Genome Med 2009, 1:6 doi:10.1186/gm6). One sentence sums up my feeling on GINA–we absolutely needed some protection, but other problems in our health care and insurance systems will persist…
If significant sections of the public focus on these gaps in US policy, reluctant to enter the genomic era without a blanket guarantee against harm, GINA may fail to live up to the hopes of its supporters.
There was also a series of public meetings about biobanking and genetics research that I was following (Town hall meetings on genes + environment studies). I wish I could have participated in these town halls to get a sense of the room full of people interested in this topic–but none of them were near me. However, the report on these was just released and you can get the summary of the outcomes from the sessions:
….Most participants felt that the biobank should go forward, and more than half indicated they were likely to participate in it if asked. Among the issues participants weighed in on were privacy protections for participants and concerns about possible misuse of information collected, the nature of the proposed study’s consent agreement, and the ability to get individual research results back from the study….
If you go to the DNApolicy.org site you can download the report in PDF form. It is clear that the participants were concerned about discrimination based on the information–especially by insurers, but also law enforcement. And this is despite the passage of GINA during this timeframe. There are privacy concerns in general, too. And the potential for misuse for “nefarious” purposes. They also saw the benefits–research and new knowledge, new medications, increased precision for treatments.