Patient Views on the Use of Personal Health Information and Biological Samples for Biobank Research

Authors

Katherine Gillespie, Palo Alto Medical Foundation Research Institute, Palo Alto, CAFollow
Harold Luft, Palo Alto Medical Foundation Research Institute, Palo Alto, CA
Yasmin Hernandez, Palo Alto Medical Foundation Research Institute, Palo Alto, CA
Sandra Lee, Stanford Center for Biomedical Ethics, Palo Alto, CA
Mildred Cho, Stanford Center for Biomedical Ethics, Palo Alto, CA
Christina Craft, Seattle Children's Research Institute, Seattle, WA

Publication Date

8-10-2017

Keywords

research ethics, racial/ethnic differences in health and health care, qualitative research

Abstract

Background: Patients’ level of knowledge about and acceptance of participating in health research varies. The increasing use of genetics for research and the emerging strategies of biobanking and precision medicine raise questions about the effects of patient education, patient understanding of health research and informed consent. Whether these factors vary by patient race/ethnicity is an important but unexplored issue.

Methods: To explore these issues, multilingual videos were developed through an iterative process and were presented to patients in a community-based health care system. These videos presented topics relating to the research process, the relationship between health care and health research, consent, security and oversight. Twenty focus groups were conducted with African-American, Chinese, Hispanic, non-Hispanic white and South Asian patients. Patients viewed the videos and then answered semi-structured questions in the focus group.

Results: Participants generally expressed a willingness to participate in a hypothetical biobank, and they acknowledged the benefits of this type of research. However, willingness to participate depended on their trust in the institution, potential users of the data and potential outcomes of the research.

Conclusion: Institutional oversight and governance structures can encourage trust among patients if they meet key patient expectations. While most patients did not say they needed to know about each study conducted, they wanted to know that their data will help people, either those with similar characteristics or the general public, in the future.

Recommended Citation

Gillespie K, Luft H, Hernandez Y, Lee S, Cho M, Craft S. Patient views on the use of personal health information and biological samples for biobank research. J Patient Cent Res Rev. 2017;4:171.