The presidential bioethics brain trust unveils its draft recommendations on the use of whole genome sequencing in clinical care and research.
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.
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