Unexpected findings in the exploration of African American underrepresentation in biospecimen collection and biobanks

J Cancer Educ. 2014 Sep;29(3):580-7. doi: 10.1007/s13187-013-0586-6.

Abstract

Racial/ethnic minorities are underrepresented in current biobanking programs. The current study utilized community-based participatory research to identify motivating factors and barriers that affect older African Americans' willingness to donate biospecimens. The standardized phone survey was administered to 78 African Americans who are 55 years old or older and live in the metropolitan Detroit area to assess their overall willingness to donate biospecimens and what factors were associated with it. The majority of the participants were willing to donate biospecimens, along with their personal information, for medical research and indicated that they did donate biospecimens when they were asked. However, African Americans were rarely asked to participate in biobanking programs. Furthermore, African Americans were not as concerned with research exploitation or as mistrusting of medical researchers as previously thought by the medical researchers. Even if African Americans were concerned over potential research exploitation or mistrust of medical researchers, these concerns or mistrust did not translate into an actual unwillingness to participate in biobanking programs. Rather, transparency in medical research and biobanking programs was more important when predicting African Americans' willingness to donate biospecimens for medical research. The findings suggest that underrepresentation of African Americans in current biobanking programs may not be due to their willingness/unwillingness to participate in such programs but rather due to a failure of medical researchers to approach them. Additionally, researchers and clinicians should focus on increasing the transparency of medical research and biobanking programs rather than changing African Americans' potential negative attitudes toward them.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • African Americans / psychology*
  • Aged
  • Attitude to Health
  • Biological Specimen Banks / trends*
  • Biomedical Research
  • Community-Based Participatory Research / trends*
  • Female
  • Health Behavior*
  • Health Knowledge, Attitudes, Practice
  • Humans
  • Male
  • Patient Participation*
  • Specimen Handling / trends*
  • Surveys and Questionnaires