African-American and Caucasian participation in postmortem human brain donation for neuropsychiatric research


Autoři: Amy Deep-Soboslay aff001;  Michelle I. Mighdoll aff001;  Andrew E. Jaffe aff001;  Stephen B. Thomas aff003;  Mary M. Herman aff004;  Jonathan Sirovatka aff004;  Jewell P. King aff004;  David R. Fowler aff005;  Dawn Zulauf aff005;  Constance DiAngelo aff006;  Thomas M. Hyde aff001;  Joel E. Kleinman aff001
Působiště autorů: Lieber Institute for Brain Development, Baltimore, Maryland, United States of America aff001;  Johns Hopkins University, School of Public Health, Department of Mental Health, Baltimore, Maryland, United States of America aff002;  University of Maryland, School of Public Health, Department of Health Policy & Management, Center for Health Equity, College Park, Maryland, United States of America aff003;  Human Brain Collection Core, NIMH, NIH, Bethesda, Maryland, United States of America aff004;  Office of the Chief Medical Examiner of the State of Maryland, Baltimore, Maryland, United States of America aff005;  Office of the Chief Medical Examiner of Virginia, Northern District, Manassas, Virginia, United States of America aff006;  Johns Hopkins University, School of Medicine, Department of Psychiatry and Behavioral Sciences, Baltimore, Maryland, United States of America aff007;  Johns Hopkins University, School of Medicine, Department of Neurology, Baltimore, Maryland, United States of America aff008
Vyšlo v časopise: PLoS ONE 14(10)
Kategorie: Research Article
doi: 10.1371/journal.pone.0222565

Souhrn

Increased African-American research participation is critical to the applicability and generalizability of biomedical research, as population diversity continues to increase both domestically and abroad. Yet numerous studies document historical origins of mistrust, as well as other barriers that may contribute to resistance in the African-American community towards participation in biomedical research. However, a growing body of more recent scientific evidence suggests that African-Americans value research and are willing to participate when asked. In the present study, we set out to determine factors associated with research participation of African-American families in postmortem human brain tissue donation for neuropsychiatric disorders as compared with Caucasian families, from same-day medical examiner autopsy referrals. We retrospectively reviewed brain donation rates, as well as demographic and clinical factors associated with donation in 1,421 consecutive referrals to three medical examiner’s offices from 2010–2015. Overall, 69.7% of all next-of-kin contacted agreed to brain donation. While Caucasian families consented to donate brain tissue at a significantly higher rate (74.1%) than African-American families (57.0%) (p<0.001), African-American brain donation rates were as high as 60.5% in referrals from Maryland. Neither African-American nor Caucasian donors differed significantly from non-donors on any demographic or clinical factors ascertained, including age, sex, diagnosis of the donor, or in the relationship of the next-of-kin being contacted (p>0.05). However, Caucasian donors were significantly older, had more years of education, were more likely to be referred for study due to a psychiatric diagnosis, more likely to have comorbid substance abuse, and more likely to have died via suicide, as compared with African-American donors (p<0.05). When African-American participants are identified and approached, African-American families as well as Caucasian families are indeed willing to donate brain tissue on the spot for neuropsychiatric research, which supports the belief that African-American attitudes towards biomedical research may be more favorable than previously thought.

Klíčová slova:

African American people – Alzheimer's disease – Autopsy – Brain – Brain diseases – Medicine and health sciences – Suicide – Telephones


Zdroje

1. Shaya FT, Gbarayor CM, Huiwen Keri Y, Agyeman-Duah M, Saunders E. A perspective on African American participation in clinical trials. Contemporary clinical trials. 2007;28(2):213–7. Epub 2006/12/05. doi: 10.1016/j.cct.2006.10.001 17141575.

2. Bratton C, Chavin K, Baliga P. Racial disparities in organ donation and why. Current opinion in organ transplantation. 2011;16(2):243–9. Epub 2011/03/19. doi: 10.1097/MOT.0b013e3283447b1c 21415828.

3. Law DR, McNiesh S. Exploring barriers to organ donation in the African-American communities of California. Journal of National Black Nurses' Association: JNBNA. 2012;23(1):59–64. Epub 2012/10/16. 23061171.

4. Morgan M, Kenten C, Deedat S. Attitudes to deceased organ donation and registration as a donor among minority ethnic groups in North America and the U.K.: a synthesis of quantitative and qualitative research. Ethnicity & health. 2013;18(4):367–90. Epub 2012/12/20. doi: 10.1080/13557858.2012.752073 23249284.

5. Bussey-Jones J, Garrett J, Henderson G, Moloney M, Blumenthal C, Corbie-Smith G. 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. 2010;12(2):116–21. Epub 2010/01/26. doi: 10.1097/GIM.0b013e3181cd6689 20098329; PubMed Central PMCID: PMC3114600.

6. Zhu D, Cai J. Cardiac transplantation in the United States from 1988 to 2010: an analysis of OPTN/ UNOS registry. Clin Transpl. 2011:29–38. 22755399.

7. Consortium GT. Human genomics. The Genotype-Tissue Expression (GTEx) pilot analysis: multitissue gene regulation in humans. Science. 2015;348(6235):648–60. doi: 10.1126/science.1262110 25954001; PubMed Central PMCID: PMC4547484.

8. Fromer M, Roussos P, Sieberts SK, Johnson JS, Kavanagh DH, Perumal TM, et al. Gene expression elucidates functional impact of polygenic risk for schizophrenia. Nat Neurosci. 2016;19(11):1442–53. doi: 10.1038/nn.4399 27668389; PubMed Central PMCID: PMC5083142.

9. BrainSeq AHBGCEadlo, BrainSeq AHBGC. BrainSeq: Neurogenomics to Drive Novel Target Discovery for Neuropsychiatric Disorders. Neuron. 2015;88(6):1078–83. doi: 10.1016/j.neuron.2015.10.047 26687217.

10. Jaffe AE. Postmortem human brain genomics in neuropsychiatric disorders—how far can we go? Curr Opin Neurobiol. 2016;36:107–11. doi: 10.1016/j.conb.2015.11.002 26685806; PubMed Central PMCID: PMC4857188.

11. Kleinman JE, Law AJ, Lipska BK, Hyde TM, Ellis JK, Harrison PJ, et al. Genetic neuropathology of schizophrenia: new approaches to an old question and new uses for postmortem human brains. Biol Psychiatry. 2011;69(2):140–5. doi: 10.1016/j.biopsych.2010.10.032 21183009; PubMed Central PMCID: PMC4351748.

12. Waldvogel HJ, Bullock JY, Synek BJ, Curtis MA, van Roon-Mom WM, Faull RL. The collection and processing of human brain tissue for research. Cell Tissue Bank. 2008;9(3):169–79. doi: 10.1007/s10561-008-9068-1 18357514.

13. Colantuoni C, Lipska BK, Ye T, Hyde TM, Tao R, Leek JT, et al. Temporal dynamics and genetic control of transcription in the human prefrontal cortex. Nature. 2011;478(7370):519–23. Epub 2011/10/28. doi: 10.1038/nature10524 22031444; PubMed Central PMCID: PMC3510670.

14. Jaffe AE, Gao Y, Deep-Soboslay A, Tao R, Hyde TM, Weinberger DR, et al. Mapping DNA methylation across development, genotype and schizophrenia in the human frontal cortex. Nat Neurosci. 2016;19(1):40–7. doi: 10.1038/nn.4181 26619358; PubMed Central PMCID: PMC4783176.

15. McCullumsmith RE, Hammond JH, Shan D, Meador-Woodruff JH. Postmortem brain: an underutilized substrate for studying severe mental illness. Neuropsychopharmacology. 2014;39(1):65–87. doi: 10.1038/npp.2013.239 24091486; PubMed Central PMCID: PMC3857666.

16. Beach TG, Sue LI, Walker DG, Roher AE, Lue L, Vedders L, et al. The Sun Health Research Institute Brain Donation Program: description and experience, 1987–2007. Cell Tissue Bank. 2008;9(3):229–45. doi: 10.1007/s10561-008-9067-2 18347928; PubMed Central PMCID: PMC2493521.

17. Rademaker MC, de Lange GM, Palmen S. The Netherlands Brain Bank for Psychiatry. Handb Clin Neurol. 2018;150:3–16. doi: 10.1016/B978-0-444-63639-3.00001-3 29496148.

18. Garrick T, Sundqvist N, Dobbins T, Azizi L, Harper C. Factors that influence decisions by families to donate brain tissue for medical research. Cell Tissue Bank. 2009;10(4):309–15. doi: 10.1007/s10561-009-9136-1 19517269.

19. Garrick T, Howell S, Terwee P, Redenbach J, Blake H, Harper C. Brain donation for research: who donates and why? J Clin Neurosci. 2006;13(5):524–8. doi: 10.1016/j.jocn.2005.06.014 16678423.

20. Sundqvist N, Garrick T, Harding A. Families' reflections on the process of brain donation following coronial autopsy. Cell Tissue Bank. 2012;13(1):89–101. doi: 10.1007/s10561-010-9233-1 21140229; PubMed Central PMCID: PMC3154613.

21. Barnes LL, Shah RC, Aggarwal NT, Bennett DA, Schneider JA. The Minority Aging Research Study: ongoing efforts to obtain brain donation in African Americans without dementia. Curr Alzheimer Res. 2012;9(6):734–45. 22471868; PubMed Central PMCID: PMC3409294.

22. Byrd GS, Edwards CL, Kelkar VA, Phillips RG, Byrd JR, Pim-Pong DS, et al. Recruiting intergenerational African American males for biomedical research Studies: a major research challenge. Journal of the National Medical Association. 2011;103(6):480–7. doi: 10.1016/s0027-9684(15)30361-8 21830630.

23. Darnell KR, McGuire C, Danner DD. African American participation in Alzheimer's disease research that includes brain donation. Am J Alzheimers Dis Other Demen. 2011;26(6):469–76. doi: 10.1177/1533317511423020 22009227; PubMed Central PMCID: PMC3329867.

24. Haroutunian V, Pickett J. Autism brain tissue banking. Brain Pathol. 2007;17(4):412–21. doi: 10.1111/j.1750-3639.2007.00097.x 17919127.

25. Bonner GJ, Darkwa OK, Gorelick PB. Autopsy recruitment program for African Americans. Alzheimer Dis Assoc Disord. 2000;14(4):202–8. 11186597.

26. Hartz SM, Johnson EO, Saccone NL, Hatsukami D, Breslau N, Bierut LJ. Inclusion of African Americans in genetic studies: what is the barrier? Am J Epidemiol. 2011;174(3):336–44. doi: 10.1093/aje/kwr084 21633120; PubMed Central PMCID: PMC3202157.

27. Kaye JA, Dame A, Lehman S, Sexton G. Factors associated with brain donation among optimally healthy elderly people. J Gerontol A Biol Sci Med Sci. 1999;54(11):M560–4. doi: 10.1093/gerona/54.11.m560 10619318.

28. Boise L, Hinton L, Rosen HJ, Ruhl MC, Dodge H, Mattek N, et al. Willingness to Be a Brain Donor: A Survey of Research Volunteers From 4 Racial/Ethnic Groups. Alzheimer Dis Assoc Disord. 2017;31(2):135–40. doi: 10.1097/WAD.0000000000000174 27779492; PubMed Central PMCID: PMC5403614.

29. Jefferson AL, Lambe S, Cook E, Pimontel M, Palmisano J, Chaisson C. Factors associated with African American and White elders' participation in a brain donation program. Alzheimer Dis Assoc Disord. 2011;25(1):11–6. doi: 10.1097/WAD.0b013e3181f3e059 20856099; PubMed Central PMCID: PMC3010335.

30. Russell E, Robinson DH, Thompson NJ, Perryman JP, Arriola KR. Distrust in the healthcare system and organ donation intentions among African Americans. J Community Health. 2012;37(1):40–7. doi: 10.1007/s10900-011-9413-3 21626439; PubMed Central PMCID: PMC3489022.

31. Broman CL. Race differences in the receipt of mental health services among young adults. Psychol Serv. 2012;9(1):38–48. doi: 10.1037/a0027089 22449086.

32. Branson RD, Davis K Jr., Butler KL. African Americans' participation in clinical research: importance, barriers, and solutions. Am J Surg. 2007;193(1):32–9; discussion 40. doi: 10.1016/j.amjsurg.2005.11.007 17188084.

33. Spruill IJ. Enhancing recruitment of African-American families into genetic research: lessons learned from Project SuGar. J Community Genet. 2010;1(3):125–32. doi: 10.1007/s12687-010-0017-x 21584223; PubMed Central PMCID: PMC3093663.

34. Odulana A, Kim MM, Green M, Taylor Y, Howard DL, Godley P, et al. Participating in research: attitudes within the African American church. J Relig Health. 2014;53(2):373–81. doi: 10.1007/s10943-012-9637-2 22886179; PubMed Central PMCID: PMC4419576.

35. Durant RW, Legedza AT, Marcantonio ER, Freeman MB, Landon BE. Willingness to participate in clinical trials among African Americans and whites previously exposed to clinical research. J Cult Divers. 2011;18(1):8–19. 21526582; PubMed Central PMCID: PMC3241443.

36. Glaw XM, Garrick TM, Terwee PJ, Patching JR, Blake H, Harper C. Brain donation: who and why? Cell Tissue Bank. 2009;10(3):241–6. doi: 10.1007/s10561-009-9121-8 19184533.

37. Yancey AK, Ortega AN, Kumanyika SK. Effective recruitment and retention of minority research participants. Annu Rev Public Health. 2006;27:1–28. doi: 10.1146/annurev.publhealth.27.021405.102113 16533107.

38. Harris Y, Gorelick PB, Samuels P, Bempong I. Why African Americans may not be participating in clinical trials. Journal of the National Medical Association. 1996;88(10):630–4. 8918067; PubMed Central PMCID: PMC2608128.

39. Fryer CS, Passmore SR, Maietta RC, Petruzzelli J, Casper E, Brown NA, et al. The Symbolic Value and Limitations of Racial Concordance in Minority Research Engagement. Qualitative health research. 2015. Epub 2015/03/15. doi: 10.1177/1049732315575708 25769299; PubMed Central PMCID: PMC4658313.


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