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

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Journal of Racial and Ethnic Health Disparities Aims and scope Submit manuscript

Abstract

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.

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Acknowledgments

We would like to acknowledge the important contributions of time, knowledge, and support provided by our community partners, Zion Grove Missionary Baptist Church (Pastor Michael Brooks) and the Kansas Black Healthcare Coalition (Melissa Robinson, President and Doris Grant, Community Health Educator). We also acknowledge the generosity of the Kansas City community members who were willing to share their thoughts with us about research. Finally, we would like to recognize Mrs. Henrietta Lacks for her contributions to science and the Lacks family for their continued efforts in helping scientists to conduct fair and ethical research. Grant support is provided by the National Institute on Minority Health and Health Disparities grant #1RC4MD005738 (PI, Goggin) and the National Heart, Lung, and Blood Institute grant #1K23HL105783 (PI, Jones).

Author information

Authors and Affiliations

  1. Department of Pediatrics, University of Missouri-Kansas City, 2401 Gillham Rd, Kansas City, MO, 64108, USA

    Bridgette L. Jones, Carrie A. Vyhlidal, Andrea Bradley-Ewing, Ashley Sherman & Kathy Goggin

  2. Division of Pediatric Pharmacology and Therapeutic Innovation, Children’s Mercy Hospitals and Clinics, Kansas City, MO, USA

    Bridgette L. Jones & Carrie A. Vyhlidal

  3. Division of Allergy, Asthma and Clinical Immunology, Children’s Mercy Hospitals and Clinics, Kansas City, MO, USA

    Bridgette L. Jones

  4. Children’s Mercy Hospitals and Clinics, Kansas City, MO, USA

    Bridgette L. Jones, Carrie A. Vyhlidal, Andrea Bradley-Ewing, Ashley Sherman & Kathy Goggin

  5. Schools of Medicine and Pharmacy, University of Missouri-Kansas City, Kansas City, MO, USA

    Bridgette L. Jones, Carrie A. Vyhlidal & Kathy Goggin

  6. Division of Health Services and Outcome Research, University of Missouri-Kansas City, Kansas City, MO, USA

    Andrea Bradley-Ewing, Ashley Sherman & Kathy Goggin

Authors
  1. Bridgette L. Jones
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  2. Carrie A. Vyhlidal
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  3. Andrea Bradley-Ewing
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  4. Ashley Sherman
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Corresponding author

Correspondence to Bridgette L. Jones.

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The authors declare that they have no conflicts of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

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Jones, B.L., Vyhlidal, C.A., Bradley-Ewing, A. et al. 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 and Ethnic Health Disparities 4, 735–745 (2017). https://doi.org/10.1007/s40615-016-0277-1

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  • DOI: https://doi.org/10.1007/s40615-016-0277-1

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