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Conducting Potentially “Sensitive” Research Using Biobank Data Collected Under Broad or Blanket Consent: Participant Perspectives and Responsible Communication

January 14, 2019 - 12:00 pm

Michelle N. Meyer, PhD, JD
Assistant Professor & Associate Director, Research Ethics, Center for Translational Bioethics & Health Care Policy, Geisinger Health System

Many biobanks, including the All of Us Research Program, which plans to enroll 1 million Americans, collect data under either broad consent (in which secondary research is often limited to “health-related” research) or blanket consent (in which there are no limits on secondary research). The former kind of consent raises ethical concerns about whether participants’ understanding of “health-related” research is as broad as researchers’ and both kinds of consent raise concerns about whether there are particular kinds of “sensitive” research about which participants might have moral, religious, or cultural objections. In this talk, I will briefly discuss some of the ethical concerns and corresponding researcher responsibilities raised by “social science genomics” research, and then present the findings of a mixed methods study of the attitudes of health system biobank participants towards different secondary use of their data collected under broad consent.

Seminar on Ethical, Legal and Social Implications of Genetics

Monday, January 14, 2019 12:00-1:00pm

Rm. 10-204, Irving Institute for Clinical and Translational Research, 10th Floor, Presbyterian Hospital (PH) Building, 622 W. 168th Street