Public Expectations for Return of Results from Large-Cohort Genetic Research
- American Journal of Bioethics
Author/s: -Murphy, Juli -Scott, Joan -Kaufman, David -Geller, Gail -LeRoy, Lisa -Hudson, Kathy
Journal: American Journal of Bioethics
Start Page: 36
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.