There’s a great lecture pair on genomic data privacy up at the GenomeTV channel, a service of the NHGRI. The two speakers are Isaac Kohane and George Church, two of the foremost authorities on the use of genetic data in research.
I found many things to agree with in both talks, and a few substantial points of disagreement. Kohane quoted Richard Stallman in his talk, and I was slightly surprised by how pragmatic the quotation sounded in this context:
We must require new systems to be designed for privacy rather than to collect all possible data. [...] It is not too late to protect privacy pretty well, but we must insist on it — which means, not heed the people who say it is hopeless.