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Do researchers have a duty? Should participants have a choice?

Thursday, November 19, 2015
Location: Brinkhous-Bullitt 219
Anya Prince & Jean Cadigan

In genomics research, it is becoming common practice to return individualized primary and incidental findings to participants and several ongoing major studies have begun to automatically transfer these results to a participant’s clinical medical record. This presentation will explore who should decide whether to place genomic research findings into a clinical medical record. Should participants make this decision or does a researcher’s duty to place this information in a medical record override the participant’s autonomy? We will examine ethical, legal, professional, and regulatory duties that may compel or guide researchers’ actions.

Anya Prince, JD, MPP, is Post-Doctoral Fellow at the UNC Center for Genomics and Society. Jean Cadigan, PhD, is Assistant Professor at the UNC Department of Social Medicine.