REFERENCES
  1. Alford, S. H., McBride, C. M., Reid, R. J., Larson, E. B., Baxevanis, A. D., & Brody, L. C. (2010, March 18). Participation in genetic testing research varies by social group . Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/20299772/.
  2. Amiri, L., Cassidy-Bushrow, A. E., Dakki, H., Li, J., Wells, K., Oliveria, S. A., … Lanfear, D. E. (2014, January).Patient characteristics and participation in a genetic study: a type 2 diabetes cohort . Journal of investigative medicine : the official publication of the American Federation for Clinical Research. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3978128/.
  3. Bentley, J. P., & Thacker, P. G. (2004, June 1). The influence of risk and monetary payment on the research participation decision making process . Journal of Medical Ethics. Retrieved March 13, 2019, from https://jme.bmj.com/content/30/3/293.
  4. Braunstein, J. B., Sherber, N. S., Schulman, S. P., Ding, E. L., & Powe, N. R. (2008, January). Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials . Medicine. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/18204365/.
  5. Buseh, A. G., Underwood, S. M., Stevens, P. E., Townsend, L., & Kelber, S. T. (2012, December 4). Black African immigrant community leaders’ views on participation in genomics research and DNA biobanking . Nursing Outlook. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/23219004/.
  6. Bussey-Jones, J., Garrett, J., Henderson, G., Moloney, M., Blumenthal, C., & Corbie-Smith, G. (2010, February). The role of race and trust in tissue/blood donation for genetic research . Genetics in medicine : official journal of the American College of Medical Genetics. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/20098329/.
  7. Byrd, G. S., Edwards, C. L., Kelkar, V. A., Phillips, R. G., Byrd, J. R., Pim-Pong, D. S. S., … Pericak-Vance, M. (2011, June).Recruiting intergenerational African American males for biomedical research Studies: a major research challenge . Journal of the National Medical Association. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/21830630/.
  8. Cottler, L. B., McCloskey, D. J., Aguilar-Gaxiola, S., Bennett, N. M., Strelnick, H., Dwyer-White, M., … Evanoff, B. (2013, September). Community needs, concerns, and perceptions about health research: findings from the clinical and translational science award sentinel network . American journal of public health. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3966684/.
  9. Diaz, V. A., Mainous, A. G., McCall, A. A., & Geesey, M. E. (2008, January). Factors affecting research participation in African American college students . Family medicine. https://pubmed.ncbi.nlm.nih.gov/18172798/.
  10. Donovan, K. A., & Tucker, D. C. (2000, February). Knowledge about genetic risk for breast cancer and perceptions of genetic testing in a sociodemographically diverse sample . Journal of behavioral medicine. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/10749009/.
  11. Edwards, T. A., Thompson, H. S., Kwate, N. O. A., Brown, K., McGovern, M. M., Forman, A., … Valdimarsdottir, H. B. (2008, May 13).Association between temporal orientation and attitudes about BRCA1/2 testing among women of African descent with family histories of breast cancer . Patient education and counseling. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2703430/.
  12. Fagbemiro, L., & Adebamowo , C. (2014, April 27). Knowledge and attitudes to personal genomics testing for complex diseases among Nigerians . BMC Medical Ethics. Retrieved February 03, 2019, from https://bmcmedethics.biomedcentral.com/articles/10.1186/1472-6939-15-34.
  13. Ford, M. E., Alford, S. H., Britton, D., McClary, B., & Gordon, H. S. (2007, August 15). Factors influencing perceptions of breast cancer genetic counseling among women in an urban health care system . Journal of genetic counseling. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/17701328/.
  14. George, S., Duran, N., & Norris, K. (2014, February). A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders . American journal of public health. Retrieved January 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3935672/.
  15. Gill, P. S., Plumridge, G., Khunti, K., & Greenfield, S. (2012, September 16). Under-representation of minority ethnic groups in cardiovascular research: a semi-structured interview study . Family practice. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/22987456/.
  16. Glenn, B. A., Chawla, N., & Bastani, R. (2012). Barriers to genetic testing for breast cancer risk among ethnic minority women: an exploratory study . Ethnicity & Disease. Retrieved February 03, 2019, from https://www.ethndis.org/edonline/index.php/ethndis/article/view/449/498.
  17. Goldenberg, A. J., Hull, S. C., Wilfond, B. S., & Sharp, R. R. (2010, October 8). Patient perspectives on group benefits and harms in genetic research . Public health genomics. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3104869/.
  18. Gordon, E. J., Amortegui, D., Blancas, I., Wicklund, C., Friedewald, J., & Sharp, R. R. (2018, October 22). African American Living Donors’ Attitudes About APOL1 Genetic Testing: A Mixed Methods Study . National Kidney Foundation. Retrieved February 03, 2019, from https://www.ajkd.org/article/S0272-6386(18)30881-3/fulltext.
  19. Grant, R. W., & Sugarman, J. (2004, December). Ethics in human subjects research: do incentives matter? The Journal of medicine and philosophy. Retrieved March 13, 2019, from https://pubmed.ncbi.nlm.nih.gov/15590518/.
  20. Rabi Abdullahi v. Pfizer Inc. (United States Court of Appeals for the Second Circuit January 30, 2009) (Child Rights International Network, Dist. file).
  21. Henderson, G., Garrett, J., Bussey-Jones, J., Eastin Moloney, M., Blumenthal, C., & Corbie-Smith, G. (2008, March). Great expectations: views of genetic research participants regarding current and future genetic studies . Genetics in medicine : official journal of the American College of Medical Genetics. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/18344709/.
  22. Hsieh, G., & Kocielnik, R. (2016, February). You Get Who You Pay for: The Impact of Incentives on Participation Bias. Retrieved February 03, 2019, from Retrieved January 03, 2019, from https://faculty.washington.edu/garyhs/docs/hsieh-CSCW2016-incentives.pdf
  23. Hurtado-de-Mendoza, A., Jackson, M. C., Anderson, L., & Sheppard, V. B. (2016, July 12). The Role of Knowledge on Genetic Counseling and Testing in Black Cancer Survivors at Increased Risk of Carrying a BRCA1/2 Mutation . Journal of genetic counseling. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5233651/.
  24. Jenkins, M. M., Reed‐Gross, E., Rasmussen, S. A., Barfield, W. D., Prue, C. E., Gallagher, M. L., & Honein, M. A. (2009, October 28).Maternal attitudes toward DNA collection for gene–environment studies: A qualitative research study . Wiley Online Library. Retrieved February 03, 2019, from https://onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.a.33043.
  25. Johnson, V. A., Edwards, K. A., Sherman, S. L., Stephens, L. D., Williams, W., Adair, A., & Deer-Smith, M. H. (2009). Decisions to participate in fragile X and other genomics-related research: Native American and African American voices . Journal of cultural diversity. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/19824292/.
  26. Jones, B. L., Vyhlidal, C. A., Bradley-Ewing, A., Sherman, A., & Goggin, K. (2017, August). If We Would Only Ask: How Henrietta Lacks Continues to Teach Us About Perceptions of Research and Genetic Research Among African Americans Today . Journal of racial and ethnic health disparities. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/27664025/.
  27. Kapiriri, L., Tharao, W., Muchenje, M., Khatundi, I. M., & Ongoiba, F. (2017, January 3). How acceptable is it for HIV positive African, Caribbean and Black women to provide breast milk/fluid samples for research purposes? BMC research notes. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5217306/.
  28. Kennedy, B. M., Harsha, D. W., Bookman, E. B., Hill, Y. R., Rankinen, T., Rodarte, R. Q., & Murla, C. D. (2011, August 23).Challenges to recruitment and retention of African Americans in the gene-environment trial of response to dietary interventions (GET READI) for heart health . Health education research. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3168336/.
  29. Khan, F. A. (2011, August 10). The Immortal Life of Henrietta Lacks . The Journal of IMA. Retrieved January 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3516052/.
  30. Kochhar, R. (2018, September 6). The American middle class is stable in size, but losing ground financially to upper-income families . Pew Research Center. Retrieved February 01, 2019, from https://www.pewresearch.org/fact-tank/2018/09/06/the-american-middle-class-is-stable-in-size-but-losing-ground-financially-to-upper-income-families/.
  31. Lang, R., Kelkar, V. A., Byrd, J. R., Edwards, C. L., Pericak-Vance, M., & Byrd, G. S. (2013). African American participation in health-related research studies: indicators for effective recruitment . Journal of public health management and practice : JPHMP. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/23358288/.
  32. Lemke, A. A., Wolf, W. A., Herbert-Beirne, J., & Smith, M. E. (2010).Public and biobank participant attitudes toward genetic research participation and data sharing . Public health genomics. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/20805700/.
  33. McDonald, J. A., K, F. F., Weathers, B., Guerra, C. E., Troxel, A. B., Domchek, S., … Hughes Halbert, C. (2013, September 3).Understanding participation by African Americans in cancer genetics research . Journal of the National Medical Association. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3760677/.
  34. McDonald, J. A., Weathers, B., Barg, F. K., Troxel, A. B., Shea, J. A., Bowen, D., … Hughes Halbert, C. (2012, April).Donation intentions for cancer genetics research among African Americans . Genetic testing and molecular biomarkers. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326272/.
  35. McDonald, J. A., Vadaparampil, S., Bowen, D., Magwood, G., Obeid, J. S., Jefferson, M., … Hughes Halbert, C. (2012, September 12).Intentions to donate to a biobank in a national sample of African Americans . Public health genomics. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5019027/.
  36. Mezuk, B., Eaton, W. W., & Zandi, P. (2008, March 26).Participant characteristics that influence consent for genetic research in a population-based survey: the Baltimore epidemiologic catchment area follow-up . Community genetics. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2853229/.
  37. Moher, D., Liberati, A., Tetzlaff, J., Altman, D., & Group, T. (2009, July 21). Preferred reporting items for systematic reviews and meta-analyses: The prisma statement. Retrieved September 15, 2021, from https://journals.plos.org/plosmedicine/article?id=10.1371%2Fjournal.pmed.1000097
  38. Office for Human Research Protections. (2016, March 30). Genetic Information Nondiscrimination Act Guidance (2009). Retrieved January 03, 2019, from https://www.hhs.gov/ohrp/regulations-and-policy/guidance/guidance-on-genetic-information-nondiscrimination-act/index.html
  39. Office for Human Research Protections. (2017, January 19). Revised Common Rule. Retrieved January 03, 2019, from https://www.hhs.gov/ohrp/regulations-and-policy/regulations/finalized-revisions-common-rule/index.html
  40. Office for Human Research Protections. (2016, March 15). The Belmont Report. Retrieved January 03, 2019, from https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.html
  41. Office for Human Research Protections. (2019, January 30). International Compilation of Human Research Standards. Retrieved January 03, 2019, from https://www.hhs.gov/ohrp/sites/default/files/2019-International-Compilation-of-Human-Research-Standards.pdf
  42. Otado, J., Kwagyan, J., Edwards, D., Ukaegbu, A., Rockcliffe, F., & Osafo, N. (2015, May 14). Culturally Competent Strategies for Recruitment and Retention of African American Populations into Clinical Trials . Clinical and Translational Science. Retrieved January 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4626379/.
  43. Pettey, C. M., McSweeney, J. C., Stewart, K. E., Price, E. T., Cleves, M. A., Heo, S., & Souder, E. (2014, October 16). Perceptions of family history and genetic testing and feasibility of pedigree development among African Americans with hypertension . European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4758451/.
  44. Ramirez, A. G., Chalela, P., Gallion, K. J., Muñoz, E., Holden, A. E., Burhansstipanov, L., … Suarez, L. (2015). Attitudes Toward Breast Cancer Genetic Testing in Five Special Population Groups . Journal of health disparities research and practice. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4739821/.
  45. Resnik, D. B. (2020, August 25). Research Ethics Timeline . National Institute of Environmental Health Sciences. Retrieved January 03, 2019, from https://www.niehs.nih.gov/research/resources/bioethics/timeline/index.cfm.
  46. Rogers, C. R., Rovito, M. J., Hussein, M., Obidike, O. J., Pratt, R., Alexander, M., … Warlick, C. (2018, November). Attitudes Toward Genomic Testing and Prostate Cancer Research Among Black Men . American journal of preventive medicine. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6352989/.
  47. Sankaré, I. C., Bross, R., Brown, A. F., Pino, H. E. del, Jones, L. F., Morris, D. A. M., … Kahn, K. L. (2015, June 21).Strategies to Build Trust and Recruit African American and Latino Community Residents for Health Research: A Cohort Study.Retrieved March 01, 2019, from https://pubmed.ncbi.nlm.nih.gov/26094679/.
  48. Sanderson, S. C., Diefenbach, M. A., Zinberg, R., Horowitz, C. R., Smirnoff, M., Zweig, M., . . . Richardson, L. D. (2013, October).Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: A structured interview study. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3773313/pdf/12687_2013_Article_154.pdf.
  49. Scarinci, I. C., Litton, A. G., Garcés-Palacio, I. C., Partridge, E. E., & Castle, P. E. (2013, February 12). Acceptability and usability of self-collected sampling for HPV testing among African-American women living in the Mississippi Delta. Women’s health issues: official publication of the Jacobs Institute of Women’s Health, 23(2), e123-30. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3596478/.
  50. Shea, B. J., Grimshaw, J. M., Wells, G. A., Boers, M., Andersson, N., Hamel, C., … Bouter, L. M. (1995, January 1). Development of AMSTAR: a measurement tool to assess the methodological quality of systematic reviews . BMC Medical Research Methodology. Retrieved February 03, 2019, from https://bmcmedresmethodol.biomedcentral.com/articles/10.1186/1471-2288-7-10.
  51. Singer, E., & Couper, M. P. (2008, September). Do incentives exert undue influence on survey participation? Experimental evidence . Journal of empirical research on human research ethics : JERHRE. Retrieved January 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2600442/.
  52. Snyder, J. E., & Gauthier, C. C. (2008). Evidence-Based Medical Ethics: Cases for Practice-Based Learning (Vol. XIV). Humana Press.
  53. Spence, C. T., & Oltmanns, T. F. (2011, October). Recruitment of African American men: overcoming challenges for an epidemiological study of personality and health . Cultural diversity & ethnic minority psychology. Retrieved January 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/21767002/.
  54. Spruill, I., Coleman, B., & Collins-McNeil, J. (2009, December).Knowledge, beliefs and practices of African-American nurses regarding genetics/genomics . Journal of National Black Nurses’ Association : JNBNA. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/20364722/.
  55. Still, C. H., Gary, F. A., McDonald, P. E., & Yarandi, H. N. (2014, July). Factors Associated with African-American Women’s Decisions to Participate in Genetic Research . Journal of National Black Nurses’ Association : JNBNA. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6159912/.
  56. Streicher, S. A., Sanderson, S. C., Jabs, E. W., Diefenbach, M., Smirnoff, M., Peter, I., … Richardson, L. D. (2011, June 7).Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study . Journal of community genetics. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3186034/.
  57. Sussner, K. M., Thompson, H. S., Jandorf, L., Edwards, T. A., Forman, A., Brown, K., Kapil-Pair, N., Bovbjerg, D. H., Schwartz, M. D., … Valdimarsdottir, H. B. (2009). The influence of acculturation and breast cancer-specific distress on perceived barriers to genetic testing for breast cancer among women of African descent. Psycho-oncology, 18(9), 945-55. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2735601/.
  58. Tuskegee University. (2021). About the USPHS Syphilis Study . Tuskegee University. Retrieved January 03, 2019, from https://www.tuskegee.edu/about-us/centers-of-excellence/bioethics-center/about-the-usphs-syphilis-study.
  59. University of New Mexico Health Sciences Center. (2020, March 24).CBPR Model . CBPR Model :: Center for Participatory Research | The University of New Mexico. Retrieved March 11, 2019, from https://cpr.unm.edu/research-projects/cbpr-project/cbpr-model.html.
  60. Veatch, R. M. (2016). Henry Beecher’s Contributions to the Ethics of Clinical Research . Perspectives in biology and medicine. Retrieved January 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/27499481/.
  61. Walker, E. R., Nelson, C. R., Antoine-LaVigne, D., Thigpen, D. T., Puggal, M. A., Sarpong, D. E., & Smith, A. M. (2014). Research participants’ opinions on genetic research and reasons for participation: A Jackson Heart Study focus group analysis. Retrieved February 03, 2019, from https://pubmed.ncbi.nlm.nih.gov/25065069/.
  62. World Medical Association. (2019). WMA Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects . Retrieved January 16, 2019, from https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involvi.
  63. Yu, J. H., Crouch, J., Jamal, S. M., Tabor, H. K., & Bamshad, M. J. (2013). Attitudes of African Americans toward return of results from exome and whole genome sequencing. American journal of medical genetics. Part A, 161A(5), 1064-72. Retrieved February 03, 2019, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3635144/.
  64. Zutlevics, T. (2016, February 18). Could providing financial incentives to research participants be ultimately self-defeating? . Retrieved March 16, 2019, from https://journals.sagepub.com/doi/full/10.1177/174701611562675