Geisinger Health System to Discuss Their Decision to Return Biobank Results to Patients at the 9th Annual Personalized and Precision Medicine Conference

The 9th Annual Personalized & Precision Medicine Conference (http://www.precision-medicine-conference.com) is coming to Orlando, Florida on October 16-17, 2017 as an Official Satellite Event to the American Society of Human Genetics Annual Meeting.

The MyCode Community Health Initiative is a precision medicine project enrolling at Geisinger Health System locations in Pennsylvania and New Jersey. It includes a system-wide biobank designed to store blood and other samples for research use by Geisinger and Geisinger collaborators. The goals of the initiative are to find and confirm disease-causing genes, identify disease-preventing genes, foster new drug development and translating study results into clinical care. Launched in January 2014 in collaboration with the Regeneron Genetics Center, the population genomics program originally set out to recruit 100,000 new study participants over five years. That target has been rapidly surpassed and the goal reset to 250,000. In June 2017, they surpassed 150,000 participants.

Among its outreach efforts, Geisinger held six focus groups in 2013 to discuss return of research results and placement in the medical record. Based on findings, Geisinger modified its biobank consent form to include the return to participants of medically actionable genomic results.

In his talk, Mr. Faucett will discuss the ethical issues considered and the patient/public outreach it held to determine the best course of action not only for My Code but for the Geisinger community. He will also discuss the ethical justification of the original decision to return results, additional ethical issues that have arisen during the return process, ethical support system put in place, and the potential research program benefits derived from sharing important health information with participants. To date, 340…

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