Panel Seeks Input on Ethical, Privacy Issues in Genomics Research

On Tuesday, the Presidential Commission for the Study of Bioethical Issues published a notice in the Federal Register seeking public feedback on the ethical issues involved in the large-scale collection of genome data, Modern Healthcare reports.

President Obama appointed the panel in 2009 to advise him on bioethical issues (Conn, Modern Healthcare, 3/27).

According to a 2011 study published in the journal Science Translational Medicine, electronic health records could accelerate the collection of genome data to advance research on various diseases (iHealthBeat, 4/21/11).

Notice Details

The Federal Register notice requested public comments on issues concerning the "ready availability" of human genomics data "with regard to privacy and data access and the balancing of individual and societal interests."

The notice stated, "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."

It added that the advancement of biomedicine "raises many questions for the scientific, medical, ethics and patient communities related to how this information can and ought to be collected, used and governed."

The commission noted that comments can be submitted to info@bioethics.gov through May 25 (Modern Healthcare, 3/27).


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