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Presidential Bioethics Panel Seeks Input on Sequencing-related Issues

NEW YORK (GenomeWeb News) – A White House-appointed panel that is studying the ethical issues surrounding the use of human genome sequencing in research and medicine wants to hear what concerns and ideas the public and stakeholders have about these new technologies.

The Presidential Commission for the Study of Bioethical Issues, which is developing a report and policy recommendations to be released later this year, is seeking public comment on the ethical concerns surround the use of genomic data by researchers while protecting individual privacy. The request for comments comes after the commission held a public meeting in San Francisco in February.

In particular, the commission is looking into privacy and access issues related to large-scale human genome sequence data, including whole exome and whole genome data.

The rapidly dropping cost of sequencing has raised "many questions for the scientific, medical, ethics, and patient communities related to how this information can and ought be collected, used, and governed," the commission said in a public notice this week.

At the February meeting, the commission decided that the central questions it wants to address are those related to how to best balance the interests of individuals and society as they relate to data privacy and access.

The commission wants to hear comments on the implications of large-scale human genome sequencing on the privacy of individuals, research subjects, patients, and their families, as well as medical and research groups. It is interested in comments about "evolving notions of privacy" that are reflected in social media, as well as ways that privacy can be protected in databases and biobanks.

Other areas of interest relate to balancing individual and societal interests with regard to sharing and accessing large-scale genomic data; the control of access to this data; the role of health information technology in controlling access; and determining how much access law enforcement groups should have to human genomic data.

The commission said public comments are due by May 25, and it will spend the next six months consulting with the scientific, ethics, and patient communities before releasing its report later this year.