Public expectations for return of results from large-cohort genetic research.

Research paper by Juli J Murphy, Joan J Scott, David D Kaufman, Gail G Geller, Lisa L LeRoy, Kathy K Hudson

Indexed on: 09 Dec '08Published on: 09 Dec '08Published in: The American journal of bioethics : AJOB


The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced a strong desire to be able to access individual research results. Recognizing the wide range of possible research results from a large cohort study, they repeatedly and spontaneously suggested that cohort study participants be given ongoing choices as to which results they received.