The Presidential Commission for the Study of Bioethical Issues has released its report, "Privacy and Progress in Whole Genome Sequencing." The full text of the report, along with the accompanying press release, is available here. A Google-roundup of news coverage of the release is here.
I looked through the report last night, and am left with the general view that it's a necessary and useful prod to action. The report points out huge gaps in our legal preparedness for the $1000 genome. For example, federal law prohibits health insurers and employers from discriminating against insureds on the basis of genetic information, but life insurers and long-term care insurers aren't covered. Another: only about half of the states have laws in place prohibiting genetic sequencing of persons without their consent.
The report calls for states to adopt "robust" consent standards, though it is skeptical about the workability of rigorous re-consenting of subjects for new research done on their previously-obtained genetic information. It calls for uniform rules governing access to genetic data, and for policies requiring researchers to make clear to subjects whether and in what circumstances incidental findings will be disclosed to them. And it calls for strong standards not only of privacy-protection, but of data-security protection.
It's hard to blame the Commission for remaining at a fairly high level of generality in their recommendations. They were looking at genetic screening by public and private bodies, of persons and of tissue samples, for clinical and research purposes. When you have to talk about everything, it's hard to say much of anything. On the whole, the Commission is to be applauded for bringing policy-makers' attention to, and offering sensible discussions and analysis of, problems associated with genome sequencing for which we are legally unprepared.
More when I've had more time for reading!
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