Clinical Trials Participation Among African Americans and the Ethics of Trust: Leadership Perspectives.
African American
Bioethics
Clinical Trials
Public Health Ethics
Trust
Trustworthiness
Journal
Journal of healthcare, science and the humanities
ISSN: 2159-8819
Titre abrégé: J Healthc Sci Humanit
Pays: United States
ID NLM: 101562452
Informations de publication
Date de publication:
2020
2020
Historique:
entrez:
23
2
2023
pubmed:
1
10
2020
medline:
1
10
2020
Statut:
ppublish
Résumé
Assuring health equity throughout the U.S. continues to challenge the public and private research enterprise. Even with some progress, racial and ethnic health disparities continue, particularly among African Americans. Health equity for African Americans is improbable unless participation in clinical trials is measurably increased. To inform efforts to enhance participation, interviews were conducted with three African American leadership groups from across the country to document their perceptions of why the research community is unable to engage African Americans effectively in clinical trials. The results of thirty-five interviews, conducted from three leadership groups, were analyzed and are reported in this article. The leadership groups include health/education, faith, and civic society. This research was conducted based upon the ethical protocols of the National Center for Bioethics in Research and Health Care, research ethics, and confidentiality. Findings indicate that trustworthiness must precede trust; both are essential in enhancing African American participation in research, especially in less understood clinical trials. Respondents agreed that the research community must demonstrate trustworthiness before trust can be established. They also indicated the importance of increasing the number of African American researchers in leadership roles. Also, suggestions were made regarding the need to develop short and long-term positive relationships between the research community and the African American population, at various levels, if increases in participation in clinical trials are expected. With the likely development of new clinical research and the attention to increasing excess deaths among African Americans, there must be representative numbers of African Americans and other underserved populations in leadership roles if health disparities are to be eliminated and health equity is to be achieved.
Sections du résumé
Background
UNASSIGNED
Assuring health equity throughout the U.S. continues to challenge the public and private research enterprise. Even with some progress, racial and ethnic health disparities continue, particularly among African Americans. Health equity for African Americans is improbable unless participation in clinical trials is measurably increased.
Method
UNASSIGNED
To inform efforts to enhance participation, interviews were conducted with three African American leadership groups from across the country to document their perceptions of why the research community is unable to engage African Americans effectively in clinical trials. The results of thirty-five interviews, conducted from three leadership groups, were analyzed and are reported in this article. The leadership groups include health/education, faith, and civic society.
Ethical Considerations
UNASSIGNED
This research was conducted based upon the ethical protocols of the National Center for Bioethics in Research and Health Care, research ethics, and confidentiality.
Results
UNASSIGNED
Findings indicate that trustworthiness must precede trust; both are essential in enhancing African American participation in research, especially in less understood clinical trials.
Conclusion
UNASSIGNED
Respondents agreed that the research community must demonstrate trustworthiness before trust can be established. They also indicated the importance of increasing the number of African American researchers in leadership roles. Also, suggestions were made regarding the need to develop short and long-term positive relationships between the research community and the African American population, at various levels, if increases in participation in clinical trials are expected. With the likely development of new clinical research and the attention to increasing excess deaths among African Americans, there must be representative numbers of African Americans and other underserved populations in leadership roles if health disparities are to be eliminated and health equity is to be achieved.
Types de publication
Journal Article
Langues
eng
Pagination
104-123Références
Cancer. 2014 Mar 15;120(6):877-84
pubmed: 24327389
Clin Transl Sci. 2015 Oct;8(5):460-6
pubmed: 25974328
Health Aff (Millwood). 2005 Mar-Apr;24(2):459-64
pubmed: 15757931
Annu Rev Public Health. 2003;24:83-110
pubmed: 12668755
J Cult Divers. 2007 Summer;14(2):56-60
pubmed: 19175244
J Natl Med Assoc. 2001 Dec;93(12 Suppl):14S-17S
pubmed: 11798059
AIDS Behav. 2014 Feb;18(2):263-77
pubmed: 23736885
J Natl Med Assoc. 2008 Nov;100(11):1298-303
pubmed: 19024226
J Health Care Poor Underserved. 2011 Aug;22(3 Suppl):3-13
pubmed: 21857132
J Natl Med Assoc. 2002 Jul;94(7):609-18
pubmed: 12126287
Cancer Control. 2008 Oct;15(4):344-51
pubmed: 18813202
J Natl Med Assoc. 2011 Feb;103(2):123-30
pubmed: 21443064
J Natl Med Assoc. 2004 Aug;96(8):1051-64
pubmed: 15303410
Cancer Nurs. 2007 Jul-Aug;30(4):261-9
pubmed: 17666974
J Natl Med Assoc. 2005 Jul;97(7):951-6
pubmed: 16080664
PLoS Med. 2012;9(6):e1001228
pubmed: 22719228
Am J Community Psychol. 2010 Mar;45(1-2):87-106
pubmed: 20077134
Oncologist. 2012;17(5):708-14
pubmed: 22639112
J Gen Intern Med. 1999 Sep;14(9):537-46
pubmed: 10491242