If We Would Only Ask: How Henrietta Lacks Continues to Teach Us About Perceptions of Research and Genetic Research Among African Americans Today

J Racial Ethn Health Disparities. 2017 Aug;4(4):735-745. doi: 10.1007/s40615-016-0277-1. Epub 2016 Sep 23.


Background: African Americans are under-represented in research, and there are perceptions of unwillingness among African Americans to participate in research. We explored barriers to African American research participation.

Methods: We conducted a cross-sectional survey to explore knowledge and beliefs regarding medical and genetic research among adults (n = 169) at urban community events. Descriptive data were summarized by frequencies for survey responses.

Results: Only 13 % of respondents had ever been approached for research; 93 % of those who had been approached for research had participated. Eighty-six percent of those who had previous research experience indicated willingness to participate again vs. only 30 % among those with no research experience. Seventy-four percent had altruistic views of research; 28 % were concerned about truthfulness of researchers; 52 % feared incidental discoveries.

Conclusion: African Americans have favorable views of research; however, few are being engaged in studies. Effective interventions to address identified barriers may improve participation and lead to better health outcomes among African Americans.

Keywords: Asthma; Disparities; Genetics; Research; Underserved.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Biomedical Research*
  • Black or African American / psychology*
  • Black or African American / statistics & numerical data
  • Cross-Sectional Studies
  • Female
  • Genetic Research*
  • Health Knowledge, Attitudes, Practice / ethnology*
  • Health Status Disparities
  • Humans
  • Male
  • Middle Aged
  • Midwestern United States
  • Research Subjects / statistics & numerical data
  • Surveys and Questionnaires
  • Urban Population / statistics & numerical data
  • Young Adult