The blog of the Presidential Commission for the Study of Bioethical Issues

Assessing the Life-Saving Potential and Privacy Implications of Whole Genome Sequencing

As researchers develop faster and less expensive methods of whole genome sequencing—the process in which a person’s DNA is decoded and analyzed—the potential to quickly diagnose current and future diseases has become tantalizingly close. But privacy concerns have emerged as the technology becomes more widespread.

For scientists to make life-saving discoveries, individuals must be willing to share their personal genomic data and trust that their data will be protected. But what exactly should those protections encompass? How should the information gathered through whole genome sequencing be collected, used, and governed?

Dr. Amy Gutmann, President of the University of Pennsylvania and Chair of the Presidential Commission for the Study of Bioethical Issues, opened the Commission’s meeting Wednesday in Washington with an overview of how this issue has been tackled so far.

“We began our work on this project last year, and many experts, stakeholders, and members of the public have enriched our deliberations,” noted Dr. Gutmann. “This is the fourth meeting at which we have addressed this project. We have also reached out to 18 federal agencies to learn about their relevant practices and policies, and they have been very forthcoming in their responses. And, we have received extensive and thoughtful public comment.”

This is the last meeting in which the Commission will consider this issue before releasing its report on genomics and privacy in fall 2012.

1 Comment to Assessing the Life-Saving Potential and Privacy Implications of Whole Genome Sequencing

  1. August 2, 2012 at 7:46 am | Permalink

    There ought to be provisions in GeRPA (the Genetic Record Privacy Act) similar to FERPA, including the ability for citizens to request a log at anytime of how their genetic record has been shared with other parties, with a maximum processing delay of 30 days or less, and severe penalties from an oversight board if institutions fail to comply in a timely manner with a citizen’s record request.

    Building GeRPA from FERPA (and HIPAA) by preparing and releasing a policy for commentary early would serve as an actionable recommendation.

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This is a space for the members and staff of the 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.

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