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A Scoping Review of Toolkits Addressing Ethical Issues in Health Registry and Clinical Research Enrollment Among
Henry Asante Antwi1,2, Adaeze Aroh3, Deidra C Crews4
1Department of Practice, Sciences and Health Outcome Research, UMB, School of Pharmacy, Baltimore, MD.
Insights
African Americans are underrepresented in chronic kidney disease (CKD) research. This review found toolkits to improve ethical recruitment, but most lack rigorous evaluation and scalability for addressing health disparities.
Area of Science:
- Nephrology
- Health Equity
- Research Ethics
Background:
- Chronic kidney disease (CKD) disproportionately impacts African Americans.
- This population is underrepresented in health registries and clinical research.
- Ethical challenges contribute to this disparity in research participation.
Purpose of the Study:
- To map and describe existing toolkits addressing ethical challenges in CKD research for African Americans.
- To identify strategies for improving ethical recruitment and retention in CKD health registries and clinical research.
Main Methods:
- A scoping review was conducted following the Joanna Briggs Institute methodology.
- Systematic searches of Ovid MEDLINE, EMBASE, Scopus, and Cochrane Central (2000-2024) were performed.
- 14 US-based studies describing relevant tools, strategies, or frameworks were included.
Main Results:
- Identified toolkit strategies include community engagement, educational materials (e.g., APOL1 testing), educational programs (e.g., transplantation), participant surveys, virtual recruitment, and genetic testing panels.
- Toolkits aimed to mitigate mistrust and complex informed consent.
- Significant gaps were found in toolkit design, evaluation (effectiveness), scalability, and addressing structural inequities.
Conclusions:
- Existing toolkits for ethical challenges in CKD research with African Americans are nascent.
- Most toolkits lack rigorous evaluation, are context-specific, and fail to address structural drivers of inequity.
- Future work requires developing rigorously evaluated, scalable, and co-developed toolkits offering actionable, ethical solutions for inclusive research participation.
Abstract:
Chronic kidney disease (CKD) disproportionately affects African Americans, yet they remain underrepresented in health registries and clinical research enrollment. This scoping review maps and describes existing toolkits designed to address the ethical challenges that contribute to this disparity. We conducted a scoping review following the Joanna Briggs Institute methodology. We systematically searched Ovid MEDLINE, EMBASE, Scopus, and Cochrane Central for English-language studies (2000-2024) describing tools, strategies, or frameworks to improve the ethical recruitment and retention of African American patients in CKD health registries and clinical research. Of 149 records screened, 14 US-based studies met inclusion criteria. We identified several toolkit strategies: community engagement and educational materials (eg, for APOL1 testing), educational programs (eg, for living donor transplantation), participant experience surveys, virtual recruitment tools, and enhanced genetic testing panels. Although these toolkits aimed to mitigate challenges like mistrust and complex informed consent, significant gaps in design, evaluation, and scalability were identified. Most toolkits were not rigorously evaluated for effectiveness, were often context-specific (eg, limited to transplantation), and rarely addressed structural drivers of inequity. Few provided scalable, culturally tailored solutions for the digital divide or offered sustainable models for community partnership. Although several promising toolkits exist to address ethical challenges in CKD research with African Americans, they remain nascent. Future work must focus on developing rigorously evaluated, scalable, and codeveloped toolkits that move beyond describing barriers to providing actionable, ethical solutions for inclusive registry enrollment and research participation.
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