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.