We’re sorry, something doesn't seem to be working properly.

Please try refreshing the page. If that doesn't work, please contact support so we can address the problem.

Advertisement

Attitudes and experiences regarding genetic research among persons of African descent

We’re sorry, something doesn't seem to be working properly.

Please try refreshing the page. If that doesn't work, please contact support so we can address the problem.

Abstract

Minorities are underrepresented in genetic research. This study examined the attitudes, experiences, and willingness of persons of African descent related to participation in genetic research. A total of 272 persons of African descent completed a questionnaire about attitudes and experiences associated with genetic research. Descriptive, Chi-square, and logistic regression were used to examine the impact of attitudes and experiences in predicting the odds of willingness to participate in genetic research. A majority of participants (97%) indicated that they have never participated in genetic research; however, a majority also reported that they would be willing to participate in a genetic study specifically for the detection of risk factors for cancer (87%), diabetes (89%), alcohol use disorder (73%), and Alzheimer’s disease (88%). Participants who disagreed that “results from genetic research can explain why some diseases are found more often in some ethnic groups than others” were less likely to be willing to participate in studies related to cancer (OR = 0.16), diabetes (OR = .16), alcohol use disorder (OR = 0.27), and Alzheimer’s disease (OR = 0.27). Participants reported limited experiences engaging in genetic research; yet, they overwhelmingly acknowledged the importance of genetic research and expressed willingness to participate in multifactorial genetic studies despite concerns about genetic discrimination, stigma, and/or a potentially poor prognosis. Further research on the underlying reasons why persons of African descent choose to participate in genetic research should be explored and addressed to make research more inclusive and ethically sound.

This is a preview of subscription content, log in to check access.

Access options

Buy single article

Instant unlimited access to the full article PDF.

US$ 39.95

Price includes VAT for USA

Subscribe to journal

Immediate online access to all issues from 2019. Subscription will auto renew annually.

US$ 99

This is the net price. Taxes to be calculated in checkout.

Fig. 1

References

  1. Bentley AR, Callier S, Rotimi CN (2017) Diversity and inclusion in genomic research: why the uneven progress. J Community Genet 8(4):255–266. https://doi.org/10.1007/s12687-017-0316-6

  2. Buseh AG, Stevens PE, Millon-Underwood S, Townsend L, Kelber ST (2013) Community leaders' perspectives on engaging african americans in biobanks and other human genetics initiatives. J Community Genet 4(4):483–494. https://doi.org/10.1007/s12687-013-0155-z

  3. Bustamante CD, Burchard EG, De la Vega FM (2011) Genomics for the world. Nature 475(7355):163–165. https://doi.org/10.1038/475163a

  4. Cottler LB, McCloskey DJ, Aguilar-Gaxiola S, Bennett NM, Strelnick H, Dwyer-White M et al (2013) Community needs, concerns, and perceptions about health research: findings from the clinical and translational science award sentinel network. Am J Public Health 103(9):1685–1692. https://doi.org/10.2105/AJPH.2012.300941

  5. Dang JH, Rodriguez EM, Luque JS, Erwin DO, Meade CD, Chen MS Jr (2014) Engaging diverse populations about biospecimen donation for cancer research. J Community Genet 5(4):313–327. https://doi.org/10.1007/s12687-014-0186-0

  6. Ewing A, Thompson N, Ricks-Santi L (2015) Strategies for enrollment of african americans into cancer genetic studies. J Cancer Educ 30(1):108–115. https://doi.org/10.1007/s13187-014-0669-z

  7. Halbert CH, Gandy OH, Collier A, Shaker L (2006) Intentions to participate in genetics research among african american smokers. Cancer Epidemiol Biomark Prev 15(1):150–153. https://doi.org/10.1158/1055-9965.EPI-05-0437

  8. Halbert CH, McDonald J, Vadaparampil S, Rice L, Jefferson M (2016) Conducting precision medicine research with african americans. PLoS One 11(7):e0154850. https://doi.org/10.1371/journal.pone.0154850

  9. Isler MR, Sutton K, Cadigan RJ, Corbie-Smith G (2013) Community perceptions of genomic research: implications for addressing health disparities. N C Med J 74(6):470–476

  10. Jones BL, Vyhlidal CA, Bradley-Ewing A, Sherman A, Goggin K (2017) 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 4(4):735–745. https://doi.org/10.1007/s40615-016-0277-1

  11. Laegsgaard MM, Kristensen AS, Mors O (2009) Potential consumers' attitudes toward psychiatric genetic research and testing and factors influencing their intentions to test. Genet Test Mol Biomarkers 13(1):57–65. https://doi.org/10.1089/gtmb.2008.0022

  12. Lanfear DE, Jones PG, Cresci S, Tang F, Rathore SS, Spertus JA (2011) Factors influencing patient willingness to participate in genetic research after a myocardial infarction. Genome Med 3(6):39. https://doi.org/10.1186/gm255

  13. Lang R, Kelkar VA, Byrd JR, Edwards CL, Pericak-Vance M, Byrd GS (2013) African american participation in health-related research studies: indicators for effective recruitment. J Public Health Manag Pract 19(2):110–118. https://doi.org/10.1097/PHH.0b013e31825717ef

  14. Millon Underwood S, Buseh AG, Kelber ST, Stevens PE, Townsend L (2013) Enhancing the participation of african americans in health-related genetic research: findings of a collaborative academic and community-based research study. Nurs Res Pract 2013:749563. https://doi.org/10.1155/2013/749563

  15. Ochs-Balcom HM, Jandorf L, Wang Y, Johnson D, Meadows Ray V, Willis MJ, Erwin DO (2015) “It takes a village”: multilevel approaches to recruit african americans and their families for genetic research. J Community Genet 6(1):39–45. https://doi.org/10.1007/s12687-014-0199-8

  16. Parikh R, O’Keefe L, Salowe R, Mccoskey M, Pan W, Sankar P et al (2017) Factors associated with participation by african americans in a study of the genetics of glaucoma. Ethn Health:1–11. https://doi.org/10.1080/13557858.2017.1346189

  17. Popejoy AB, Fullerton SM (2016) Genomics is failing on diversity. Nature 538(7624):161–164. https://doi.org/10.1038/538161a

  18. Powell-Young YM, Spruill IJ (2013) Views of black nurses toward genetic research and testing. J Nurs Scholarsh 45(2):151–159. https://doi.org/10.1111/jnu.12015

  19. Rencher WC, Wolf LE (2013) Redressing past wrongs: changing the common rule to increase minority voices in research. Am J Public Health 103(12):2136–2140. https://doi.org/10.2105/AJPH.2013.301356

  20. Roberts LW, Kim JP (2017) Receptiveness to participation in genetic research: a pilot study comparing views of people with depression, diabetes, or no illness. J Psychiatr Res 94:156–162. https://doi.org/10.1016/j.jpsychires.2017.07.002

  21. Scott DM, Nwulia E, Kwagyan J, Cain G, Marshall VJ, Kalu N et al (2014) Genetic testing for the susceptibility to alcohol dependence: interest and concerns in an african american population. Genet Test Mol Biomarkers 18(8):538–545. https://doi.org/10.1089/gtmb.2013.0417

  22. Underwood SM, Buseh AG, Stevens PE, Townsend L, Kelber ST (2013) Reflections and perspectives of african-american community leaders regarding genetics and genomics research: sentiment and wisdom of sankofa. J Natl Black Nurses Assoc 24(1):16–23

  23. Walker ER, Nelson CR, Antoine-LaVigne D, Thigpen DT, Puggal MA, Sarpong DE, Smith AM (2014) Research participants' opinions on genetic research and reasons for participation: a Jackson heart study focus group analysis. Ethn Dis 24(3):290–297

  24. White DB, Koehly LM, Omogbehin A, McBride CM (2010) African americans' responses to genetic explanations of lung cancer disparities and their willingness to participate in clinical genetics research. Genet Med 12(8):496–502. https://doi.org/10.1097/GIM.0b013e3181e5e513

  25. Yu J, Crouch J, Jamal SM, Tabor HK, Bamshad MJ (2013) Attitudes of african americans toward return of results from exome and whole genome sequencing. Am J Med Genet A 161A(5):1064–1072. https://doi.org/10.1002/ajmg.a.35914

Download references

Acknowledgments

We would like to acknowledge the assistance of Barbara Harrison, CGC, for her insightful comments to the questionnaire prior to implementation, John Kwagyan, PhD and Nnenna Kalu, MS, MPH, for their assistance with the data analyses.

Funding

The work of this study was supported by the Charles and Mary Latham Trust Fund. Additionally, this project has been funded in whole or in part with Federal funds (UL1TR000101 previously UL1RR031975) from the National Center for Advancing Translational Sciences (NCATS) and the National Institutes of Health (NIH) through the Clinical and Translational Science Awards Program (CTSA), a trademark of DHHS and part of the Roadmap Initiative, “Re-Engineering the Clinical Research Enterprise.”

Author information

Correspondence to Denise M. Scott.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Animals

This article does not contain any studies with animals performed by the authors.

Human participants

All procedures performed in these 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.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Scott, D.M., Thomas, V.G., Otado, J. et al. Attitudes and experiences regarding genetic research among persons of African descent. J Community Genet 11, 65–72 (2020). https://doi.org/10.1007/s12687-019-00422-x

Download citation

Keywords

  • Genetic research
  • African descent
  • Willingness to participate