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.
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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.
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.”
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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
- Genetic research
- African descent
- Willingness to participate