The Department of Health and Human Services has published a notice in the Federal Register asking for public comments concerning privacy and access to the Human Genome Sequence data. The comment period ends on May 25, 2012. Here’s more information from the notice:
On November 24, 2009, the President established The Presidential Commission for the Study of Bioethical Issues (Commission) to advise him on bioethical issues generated by novel and emerging research in biomedicine and related areas of science and technology. The Commission is charged to identify and promote policies and practices that assure ethically responsible conduct of scientific research and healthcare delivery. […]
The Commission is examining issues of privacy and access as pertains to large-scale human genome sequence data, including whole exome and whole genome data. As a result of the tremendous technological advances that have dramatically reduced the cost of sequencing, the science is at a point where relatively inexpensive, rapid sequencing of whole human genomes appears not only likely, but imminent.
This prospect raises many questions for the scientific, medical, ethics, and patient communities related to how this information can and ought be collected, used, and governed. At the February 2012 meeting, the Commission decided to focus specifically on those questions related to privacy and data access and the balancing of individual and societal interests.
The Commission will spend the next six months soliciting additional input from the scientific, ethics, and patient communities, as well as others, to help inform our deliberations of these important topics. The Commission will provide the President with a report of its findings and recommendations later this year. […]
Among other issues, the Commission is interested in receiving comments on the implications of large-scale human genome sequencing for the privacy of individuals, research subjects, patients and their families; the views of those groups and medical professional communities about privacy, both as regards genomic information and evolving notions of privacy, as evidenced and influenced by social media; and models and mechanisms for protecting privacy, in both genetic/genomic databases and biobanks, but also in large databases of sensitive information.
Find out more about the issues and how to comment at the Federal Register site.