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