The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

Promoting “Privacy and Progress” at APHA

After returning from the American Society for Bioethics and Humanities (ASBH) annual meeting in Atlanta last week, Kayte Spector-Bagdady, Associate Director at the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission), is gearing up for another presentation at the American Public Health Association (APHA) meeting in Boston this week. As part of the panel “Ethics of Privacy and Health Data,” Spector-Bagdady will present on Tuesday, November 5th on a panel starting at 10:30 a.m. Her talk, “Enabling Privacy and Progress: Protecting Individual Participants in Big Data,” will focus on the ethical considerations of storing and sharing large amounts of genomic data in biobanks.

Released in October 2012, the Bioethics Commission report Privacy and Progress in Whole Genome Sequencing addresses the pressing privacy and data access issues raised by the advancement of low-cost whole genome sequencing. Scientists rely on human genome sequencing data to explore potential treatments for genetic diseases; however, individuals are less likely to consent to their genetic data being used for research without assurance that their interests in privacy are respected and secured.

“The goal of all of the Bioethics Commission’s reports is to encourage further deliberation and application of the ethical paradigms discussed. Talking about how Privacy and Progress can be applied specifically to the ‘big data’ context helps encourage this conversation,” Spector-Bagdady said.  In its report, the Bioethics Commission specifically urged federal and state governments to develop a process for ensuring a consistent floor of protections covering whole genome sequence data regardless of how they were obtained. It recommended these policies protect individual privacy by prohibiting unauthorized whole genome sequencing without the consent of the individual.

The Bioethics Commission also recently released pedagogical materials to promote bioethics scholarship in educational and professional settings. Two of these modules use issues in whole genome sequencing to demonstrate the importance of informed consent and community engagement when human subject data is involved.

Find out more at APHA tomorrow!

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This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

Learn more about the 2009 - 2017 Presidential Commission for the Study of Bioethical Issues.