The Presidential Commission for the Study of Bioethical Issues recently held its 10th meeting to discuss a number of draft recommendations relating to privacy issues raised by whole genome sequencing for research and clinical medicine. With the costs of DNA sequencing dropping, diagnostic tools advancing and electronic databases beginning to link genomic and medical information, concerns about the privacy of genome data have been growing. The commission has been working for some months to draft policy proposals that will address these concerns as well as implement workable informed consent policies.
Some of the proposals discussed during the meeting included requiring genomics research funders to hold anyone accessing genome sequencing data accountable for complying with applicable confidentiality laws and regulations and limiting access to genomic databases. The commission’s whole genome sequencing report is expected to be issued in fall 2012.
Participants also discussed “ethical issues associated with the development of medical countermeasures for children, including ethical considerations surrounding clinical research with children, ethical considerations surrounding pediatric medical countermeasure research, and ethical considerations surrounding emergency access to and use of medical countermeasures.” Public comments on these matters are requested by August 27, 2012. See Federal Register, June 28, 2012; GenomeWeb Daily News, August 3, 2012.