Balancing the privacy of patients and research subjects with the advancement and integrity of genomic science is a tall order, but it’s an issue at the center of policy recommendations being crafted by the Presidential Commission for the Study of Bioethical Issues. Late last week, the commission, which includes some of the nation's top bioethicists, concluded a year-long series of public meetings designed to help create more informed policies regarding the use of whole genome sequencing as it becomes a clinical reality and continues to drive research on a range of human conditions. The commission gave a taste of the recommendations it will present to President Barack Obama this fall.
The draft recommendations centered on patient privacy, consent, and access to genomic sequencing data, while stressing the need to balance these concerns with a certain amount of academic freedom that would allow researchers to fully utilize, share, and probe the data. One recommendation, for example, instructs funders of genomic research and policy makers to "maintain and establish strong policies for protecting data while protecting opportunities for open models of access for those who want to share data with clinicians, researchers, and others," University of Pennsylvania President Amy Gutmann, who chaired the commission, said at a meeting of the commission on Wednesday (August 1).
Other recommendations focused on giving patients a clear idea of how their genomic data might be used and by whom before they enter into such studies. These recommendations included mention of the need to tailor some consent forms to use in the clinic, setting them apart from lengthier and more detailed consent forms used in research settings.
The commission said that it plans on presenting President Obama with a final list of recommendations this fall.
(Hat tip to GenomeWeb.)