Perspectives from a Predominantly African American Community about Biobank Research and a Biobank Consent Form

Laura K Sedig; E Hill De Loney; Sarah B Bailey; Kayte Spector-Bagdady; Bianca Ghita; Lydia Koh Krienke; Raymond Hutchinson

doi:10.1002/eahr.500134

Perspectives from a Predominantly African American Community about Biobank Research and a Biobank Consent Form

Ethics Hum Res. 2022 Jul;44(4):26-33. doi: 10.1002/eahr.500134.

Authors

Laura K Sedig¹, E Hill De Loney², Sarah B Bailey³, Kayte Spector-Bagdady⁴, Bianca Ghita⁵, Lydia Koh Krienke⁶, Raymond Hutchinson⁷

Affiliations

¹ Clinical assistant professor of pediatrics at the University of Michigan Medical School.
² Michigan Institute for Clinical and Health Research Community Advisory Board member at the University of Michigan, the director of the Flint Odyssey House, Inc., and the Health Awareness Center, and the executive director of Community-Based Organization Partners.
³ Community colead with the Michigan Institute for Clinical and Health Research at the University of Michigan, the chief executive officer of Bridges Into the Future, Inc., and the vice chairperson of the Community-Based Organization Partners.
⁴ Assistant professor of obstetrics and gynecology and the associate director of the Center for Bioethics and Social Sciences in Medicine at the University of Michigan Medical School.
⁵ MD candidate at Virginia Commonwealth University School of Medicine, class of 2025.
⁶ Public health nurse and researcher at Johns Hopkins University.
⁷ Professor emeritus of pediatrics at the University of Michigan Medical School.

Abstract

Minority populations have been underrepresented in clinical trials, as well as in research biobanks that are created to conduct research with participants' biospecimens and related medical and research data. Biobank research raises issues about informed consent and privacy and the confidentiality of participants' personal data. Our study involved three focus groups of 10 adults each that were conducted in a medically underserved, predominantly African American community to elucidate questions and concerns regarding an institutional biobank. Transcripts from the discussion were qualitatively analyzed. Three main themes that arose from the focus groups included the importance of trust, the importance of the community in research, and suggestions to improve trust. The concerns identified in this study provide a starting point for future research to help research institutions become more trustworthy to the communities they serve.

Keywords: benefit sharing; biobanks; biorepositories; human research ethics; human subjects research; informed consent; minority communities in research; trust in research; trustworthy research.

MeSH terms

Adult
Biological Specimen Banks*
Black or African American
Consent Forms*
Humans
Informed Consent
Privacy

Abstract

MeSH terms

Grants and funding