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Sex Differences in Willingness to Participate in Research Based on Study Risk Level Among a Community Sample of African Americans in North Central Florida

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Abstract

This study examined the association between sex, study risks and willingness to participate in research among a community sample of African Americans. We hypothesized that African American males would be more willing to participate in studies involving both minimal and greater-than-minimal risk. The study sample was recruited through a community engagement program (HealthStreet). Interviewers obtained information on socio-demographic variables and willingness to participate in various research types. We categorized research types into minimal risk and greater- than- minimal risk based on the IRB classification. The study sample comprised 6544 African-Americans; 58.4% were females. About 92.6% of the participants were willing to participate in surveys and 58.1% in research requiring medication use. More males would participate in minimal risk studies requiring review of medical records (males 87.0% vs. females 84.2%, p = 0.0021) and studies involving giving a blood sample (males 84.2% vs. females 81.7%, p = 0.0083). Also, more males would participate in greater than minimal risk studies involving the use of medication (60.5% v. 56.3% p = 0.0007). More males were willing to participate in minimal risk studies (studies involving the review of medical records and giving blood samples) and greater-than-minimal risk study involving the use of medication.

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References

  1. Wendler D, Kington R, Madans J, Van Wye G, Christ-Schmidt H, Pratt LA, et al. Are racial and ethnic minorities less willing to participate in health research? PLoS Med. 2006;3:e19. https://doi.org/10.1371/journal.pmed.0030019.

    Article  PubMed  Google Scholar 

  2. DeFreitas D. Race and HIV clinical trial participation. J Natl Med Assoc. 2010;102:493–9. https://doi.org/10.1016/s0027-9684(15)30558-7.

    Article  PubMed  Google Scholar 

  3. Shavers VL, Lynch CF, Burmeister LF. Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol. 2002;12:248–56. https://doi.org/10.1016/S1047-2797(01)00265-4.

    Article  PubMed  Google Scholar 

  4. Shavers VL, Lynch CF, Burmeister LF. Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies. J Natl Med Assoc. 2000;92:563–72.

    CAS  PubMed  PubMed Central  Google Scholar 

  5. Webb FJ, Khubchandani J, Striley CW, Cottler LB. Correction to: Black-White differences in willingness to participate and perceptions about health research: results from the population-based HealthStreet study. J Immigr Minor Health. 2019;21:306. https://doi.org/10.1007/s10903-018-0747-0.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Kurt A, Semler L, Jacoby JL, Johnson MB, Careyva BA, Stello B, et al. Racial differences among factors associated with participation in clinical research trials. J Racial Ethn Health Disparities. 2016. https://doi.org/10.1007/s40615-016-0285-1.

    Article  PubMed  Google Scholar 

  7. Du Bois SN, Johnson SE, Mustanski B. Examining racial and ethnic minority differences among YMSM during recruitment for an online HIV prevention intervention study. AIDS Behav. 2012;16:1430–5. https://doi.org/10.1007/s10461-011-0058-0.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Cottler LB, McCloskey DJ, Aguilar-Gaxiola S, Bennett NM, Strelnick H, Dwyer-White M, et al. Community needs, concerns, and perceptions about health research: findings from the clinical and translational science award sentinel network. Am J Public Health. 2013;103:1685–92. https://doi.org/10.2105/AJPH.2012.300941.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Chang TE, Brill CD, Traeger L, Bedoya CA, Inamori A, Hagan PN, et al. Association of race, ethnicity and language with participation in mental health research among adult patients in primary care. J Immigr Minor Health. 2015;17:1660–9. https://doi.org/10.1007/s10903-014-0130-8.

    Article  PubMed  Google Scholar 

  10. Johnson RL, Saha S, Arbelaez JJ, Beach MC, Cooper LA. Racial and ethnic differences in patient perceptions of bias and cultural competence in health care. J Gen Intern Med. 2004;19:101–10. https://doi.org/10.1111/j.1525-1497.2004.30262.x.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Freimuth VS, Quinn SC, Thomas SB, Cole G, Zook E, Duncan T. African Americans’ views on research and the Tuskegee Syphilis Study. Soc Sci Med. 2001;52:797–808. https://doi.org/10.1016/s0277-9536(00)00178-7.

    Article  CAS  Google Scholar 

  12. Slomka J, Ratliff EA, McCurdy S, Timpson S, Williams ML. Perceptions of risk in research participation among underserved minority drug users. Subst Use Misuse. 2008;43:1640–52. https://doi.org/10.1080/10826080802241243.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Ding EL, Powe NR, Manson JE, Sherber NS, Braunstein JB. Sex differences in perceived risks, distrust, and willingness to participate in clinical trials: a randomized study of cardiovascular prevention trials. Arch Intern Med. 2007;167:905–12. https://doi.org/10.1001/archinte.167.9.905.

    Article  PubMed  Google Scholar 

  14. Striley CW, Lloyd S, Varma D, Vaddiparti K, Cottler LB. Trust in research among older adults. J Clin Trans Sci. 2019;3:98–98. https://doi.org/10.1017/cts.2019.223.

    Article  Google Scholar 

  15. Cook C, Mack J, Cottler LB. Research participation, trust, and fair compensation among people living with and without HIV in Florida. AIDS Care. 2018;30:27–31. https://doi.org/10.1080/09540121.2017.1338656.

    Article  PubMed  Google Scholar 

  16. McCaskill-Stevens W, Pinto H, Marcus AC, Comis R, Morgan R, Plomer K, et al. Recruiting minority cancer patients into cancer clinical trials: a pilot project involving the Eastern Cooperative Oncology Group and the National Medical Association. J Clin Oncol. 1999;17:1029–39. https://doi.org/10.1200/JCO.1999.17.3.1029.

    Article  CAS  PubMed  Google Scholar 

  17. McKnight, Chervany DH, Norman L. Trust and distrust definitions. Springer-Verlag; 2000.

  18. Mayer RC, Davis JH, Schoorman FD. An integrative model of organizational trust. Acad Manag Rev. 1995;20:709–34. https://doi.org/10.5465/amr.1995.9508080335.

    Article  Google Scholar 

  19. Hurd TC, Kaplan CD, Cook ED, Chilton JA, Lytton JS, Hawk ET, et al. Building trust and diversity in patient-centered oncology clinical trials: An integrated model. Clin Trials. 2017;14:170–9. https://doi.org/10.1177/1740774516688860.

    Article  PubMed  Google Scholar 

  20. Cooper DE. Trust. J Med Ethics. 1985;11:92–3. https://doi.org/10.1136/jme.11.2.92.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  21. Johnson DW, Noonan MP. Effects of acceptance and reciprocation of self-disclosures on the development of trust. J Couns Psychol. 1972;19:411–6. https://doi.org/10.1037/h0033163.

    Article  Google Scholar 

  22. Powell W, Richmond J, Mohottige D, Yen I, Joslyn A, Corbie-Smith G. Medical mistrust, racism, and delays in preventive health screening among African-American men. Behav Med. 2019;45:102–17. https://doi.org/10.1080/08964289.2019.1585327.

    Article  PubMed  Google Scholar 

  23. Ferrera MJ, Feinstein RT, Walker WJ, Gehlert SJ. Embedded mistrust then and now: findings of a focus group study on African American perspectives on breast cancer and its treatment. Crit Public Health. 2016;26:455–65. https://doi.org/10.1080/09581596.2015.1117576.

    Article  Google Scholar 

  24. Lang R, Kelkar VA, Byrd JR, Edwards CL, Pericak-Vance M, Byrd GS. African American participation in health-related research studies: indicators for effective recruitment. J Public Health Manag Pract. 2013;19:110–8. https://doi.org/10.1097/PHH.0b013e31825717ef.

    Article  PubMed  Google Scholar 

  25. Glass DC, Kelsall HL, Slegers C, Forbes AB, Loff B, Zion D, et al. A telephone survey of factors affecting willingness to participate in health research surveys. BMC Public Health. 2015;15:1017. https://doi.org/10.1186/s12889-015-2350-9.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  26. Meiklejohn J, Connor J, Kypri K. The effect of low survey response rates on estimates of alcohol consumption in a general population survey. PLoS ONE. 2012;7:e35527. https://doi.org/10.1371/journal.pone.0035527.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  27. Dunn KM, Jordan K, Lacey RJ, Shapley M, Jinks C. Patterns of consent in epidemiologic research: evidence from over 25,000 responders. Am J Epidemiol. 2004;159:1087–94. https://doi.org/10.1093/aje/kwh141.

    Article  PubMed  Google Scholar 

  28. Eagan TM, Eide GE, Gulsvik A, Bakke PS. Nonresponse in a community cohort study. J Clin Epidemiol. 2002;55:775–81. https://doi.org/10.1016/S0895-4356(02)00431-6.

    Article  PubMed  Google Scholar 

  29. Hille ETM, Elbertse L, Gravenhorst JB, Brand R, Verloove-Vanhorick SP. Dutch POPS-19 Collaborative Study Group. Nonresponse bias in a follow-up study of 19-year-old adolescents born as preterm infants. Pediatrics. 2005;116:662–6. https://doi.org/10.1542/peds.2005-0682.

    Article  Google Scholar 

  30. Wild TC, Cunningham J, Adlaf E. Nonresponse in a follow-up to a representative telephone survey of adult drinkers. J Stud Alcohol. 2001;62:257–61. https://doi.org/10.15288/jsa.2001.62.257.

    Article  CAS  PubMed  Google Scholar 

  31. Chen SC, Sinaii N, Bedarida G, Gregorio MA, Emanuel E, Grady C. Phase 1 healthy volunteer willingness to participate and enrollment preferences. Clin Trials. 2017;14:537–46. https://doi.org/10.1177/1740774517722131.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Murthy VH, Krumholz HM, Gross CP. Participation in cancer clinical trials: race-, sex-, and age-based disparities. JAMA. 2004;291:2720–6. https://doi.org/10.1001/jama.291.22.2720.

    Article  CAS  PubMed  Google Scholar 

  33. Peterson ED, Lytle BL, Biswas MS, Coombs L. Willingness to participate in cardiac trials. Am J Geriatr Cardiol. 2004;13:11–5. https://doi.org/10.1111/j.1076-7460.2004.01709.x.

    Article  PubMed  Google Scholar 

  34. Ford BM, Evans JS, Stoffel EM, Balmaña J, Regan MM, Syngal S. Factors associated with enrollment in cancer genetics research. Cancer Epidemiol Biomarkers Prev. 2006;15:1355–9. https://doi.org/10.1158/1055-9965.EPI-05-0816.

    Article  PubMed  Google Scholar 

  35. Mcquillan GM, Porter KS, Agelli M, Kington R. Consent for genetic research in a general population: the NHANES experience. Genet Med. 2003;5:35–42. https://doi.org/10.1097/00125817-200301000-00006.

    Article  PubMed  Google Scholar 

  36. Doyal L. Sex, gender, and health: the need for a new approach. BMJ. 2001;323:1061–3.

    Article  CAS  Google Scholar 

  37. Harrison J, Chin JFT. Warning: masculinity may damage your health. Men’s lives. New York: Macmillan; 1992.

    Google Scholar 

  38. Huggins ALB. Social perspectives on men’s health in Australia. Melbourne: Maclennan and Pett; 1992.

    Google Scholar 

  39. Sabo D. Men’s health and illness: gender, power, and the body. Thousand Oaks: SAGE; 1995.

    Google Scholar 

  40. Jack L. A candid conversation about men, sexual health, and diabetes. Diabetes Educ. 2005;31:810–7. https://doi.org/10.1177/0145721705281561.

    Article  PubMed  Google Scholar 

  41. Royster MO, Richmond A, Eng E, Margolis L. Hey brother, how’s your health? Men Masc. 2006;8:389–404. https://doi.org/10.1177/1097184X04268798.

    Article  Google Scholar 

  42. Briggs NC, Schlundt DG, Levine RS, Goldzweig IA, Stinson N, Warren RC. Seat belt law enforcement and racial disparities in seat belt use. Am J Prev Med. 2006;31:135–41. https://doi.org/10.1016/j.amepre.2006.03.024.

    Article  PubMed  Google Scholar 

  43. Nicholas DR. Men, masculinity, and cancer: risk-factor behaviors, early detection, and psychosocial adaptation. J Am Coll Health. 2000;49:27–33. https://doi.org/10.1080/07448480009596279.

    Article  CAS  PubMed  Google Scholar 

  44. Cottler LB, Striley CW, O’Leary CC, Ruktanonchai CW, Wilhelm KA. Engaging the community in research with the HealthStreet model: national and international perspectives. In: Alving B, Dai K, Chan SHH, editors. Translational medicine: what, why and how: an international perspective. Basel: S. Karger AG; 2012. p. 98–109.

    Chapter  Google Scholar 

  45. Cottler LB, Callahan CSC. HealthStreet: A community-based approach to include mental health in public health research. In: Cottler LB, editor. Mental Health in Public Health: The Next 100 Years. New York: Oxford University Press (OUP); 2011. p. 247–273.

    Google Scholar 

  46. Protections USD of H& HSO for HR. 45 CFR 46 | HHS.gov https://www.hhs.gov/ohrp/regulations-and-policy/regulations/45-cfr-46/index.html#46.102 Accessed 25 Apr 2019.

  47. Brewer LC, Hayes SN, Parker MW, Balls-Berry JE, Halyard MY, Pinn VW, et al. African American women’s perceptions and attitudes regarding participation in medical research: the Mayo Clinic/The Links Incorporated partnership. J Womens Health (Larchmt). 2014;23:681–7. https://doi.org/10.1089/jwh.2014.4751.

    Article  Google Scholar 

  48. National Aeronautics and Space Administration Institutional Review Board NASA IRB. Preparing for research - levels of risk. https://irb.nasa.gov/pfr/pfrLevelsOfRisk.aspx. Accessed 12 Feb 2020.

  49. National Research Council. Determining minimal risk in social and behavioral research. Proposed revisions to the common rule for the protection of human subjects in the behavioral and social sciences. Washington: National Academies Press; 2014.

    Google Scholar 

  50. Scharff DP, Mathews KJ, Jackson P, Hoffsuemmer J, Martin E, Edwards D. More than Tuskegee: understanding mistrust about research participation. J Health Care Poor Underserved. 2010;21:879–97. https://doi.org/10.1353/hpu.0.0323.

    Article  PubMed  PubMed Central  Google Scholar 

  51. Trudeau KJ, Devlin AS. College students and community service: who, with whom, and why? J Appl Soc Psychol. 1996;26:1867–88. https://doi.org/10.1111/j.1559-1816.1996.tb00103.x.

    Article  Google Scholar 

  52. Miller F. Gender differences in adolescents’ attitudes toward mandatory community service. J Adolesc. 1994;17:381–93. https://doi.org/10.1006/jado.1994.1034.

    Article  Google Scholar 

  53. Smith TJ. Ethnic and gender differences in community service participation among working adults. J Extension. 2005;43:2.

    CAS  Google Scholar 

  54. Brown DR, Fouad MN, Basen-Engquist K, Tortolero-Luna G. Recruitment and retention of minority women in cancer screening, prevention, and treatment trials. Ann Epidemiol. 2000;10:S13–21. https://doi.org/10.1016/s1047-2797(00)00197-6.

    Article  CAS  PubMed  Google Scholar 

  55. Institute for Women’s Policy Research. Pay equity & discrimination 2020. https://edubirdie.com/translations/pay-equity-discrimination/. Accessed 13 Feb 2020.

  56. Auspurg K, Hinz T, Sauer C. Why should women get less? Evidence on the gender pay gap from multifactorial survey experiments. Am Sociol Rev. 2017;82:179–21010. https://doi.org/10.1177/0003122416683393.

    Article  Google Scholar 

  57. United States Department of Labor. Databases, Tables & Calculators by Subject. US Bureau of Labor Statistics 2019. https://data.bls.gov/timeseries/lns14000006. Accessed 22 Apr 2019.

  58. Abadie R, Goldenberg S, Welch-Lazoritz M, Fisher CB. Establishing trust in HIV/HCV research among people who inject drugs (PWID): Insights from empirical research. PLoS ONE. 2018;13:e0208410. https://doi.org/10.1371/journal.pone.0208410.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  59. Spence CT, Oltmanns TF. Recruitment of African American men: overcoming challenges for an epidemiological study of personality and health. Cultur Divers Ethnic Minor Psychol. 2011;17:377–80. https://doi.org/10.1037/a0024732.

    Article  PubMed  PubMed Central  Google Scholar 

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Funding

Funding was provided by National Institutes of Health and National Clinical and Translational Science Award with Grant No. UL1 TR001427 and National Institute on Drug Abuse with Grant No. T32DA035167, PI: Linda B Cottler.

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Authors and Affiliations

  1. Department of Epidemiology, College of Public Health and Health Professions, College of Medicine, University of Florida, 2004 Mowry Rd, Gainesville, FL, 32610, USA

    Ayodeji Otufowora, Yiyang Liu, Deepthi S. Varma, Catherine W. Striley & Linda B. Cottler

  2. Department of Emergency Medicine, College of Medicine, University of Florida, Gainesville, FL, USA

    Henry Young II

  3. Department of Health Education and Promotion, College of Health and Human Sciences, East Carolina University, Greenville, NC, USA

    Kathleen L. Egan

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  1. Ayodeji Otufowora
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Correspondence to Ayodeji Otufowora.

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Otufowora, A., Liu, Y., Young, H. et al. Sex Differences in Willingness to Participate in Research Based on Study Risk Level Among a Community Sample of African Americans in North Central Florida. J Immigrant Minority Health 23, 19–25 (2021). https://doi.org/10.1007/s10903-020-01015-4

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