There is a recent story in the New York Times entitled Insurance Fears Lead Many to Shun DNA Tests about how people are paying for their own genetic tests to avoid divulging that information to their insurance companies and doctors for fear that it may prevent them from getting coverage in the future. As the article mentions, this is not only a concern for individuals, but also for researchers. Human consent and institutional approval processes often take months to complete. This, coupled with recent advances in sequencing technology, means our ability to sequence is beginning to outstrip our ability to acquire human samples. Thus, because of the ambiguity surrounding one's genomic rights, genomic research could be seriously hampered in the coming years.
The article also mentions the Genetic Information Nondiscrimination Act (GINA). GINA would be a tremendous step forward for individuals and researchers. As the article states, the bill overwhelmingly passed the house with a vote of 420 to 3. The article goes on to simply state, "But it has yet to reach the Senate floor." For some reason they do not mention that GINA is being held up by a single Senator, Tom Coburn (R - Oklahoma), who, strangely enough, is also a medical doctor. You can see that the health industry makes up his largest contributing block, with also a strong showing from ideology/single-issue groups. You can read more about GINA.
It is also interesting to ponder what genomic privacy means. How do you keep private something you leave behind everywhere you go?