Identifying and resolving ethical challenges related to the enrollment of black individuals with chronic kidney disease in U.S. health registries and clinical research: a qualitative study.

BACKGROUND

Chronic kidney disease (CKD) disproportionately impacts Black individuals. This disparity, coupled with historical and ongoing injustices in medical research, raises significant ethical concerns that may hinder participation in health registries and clinical research, which are critical for advancing patient-centered kidney care. This study sought to identify key ethical challenges from the perspective of Black individuals with CKD to enhance their meaningful and equitable engagement.

METHODS

We employed a qualitative approach guided by a pragmatist bioethical framework. We conducted three virtual town hall meetings with a sample of 24 self-identified Black adults with CKD and their caregivers, recruited from the Baltimore Metropolitan Area. Data were analyzed using thematic analysis. To ensure rigor, we employed intercoder reliability checks and member-checking with participants and a Community Advisory Board.

RESULTS

Six primary ethical areas emerged: (1) lack of transparent communication, (2) distrust in the research enterprise, (3) experiences of stigmatization and discrimination, (4) cultural insensitivity, (5) lack of respect and civility, and (6) potential harm from poor-quality staff. Participants proposed and prioritized actionable solutions, including implementing mandatory transparent communication policies, enhancing community-engaged outreach, enforcing anti-discrimination legislation, providing cultural competency training for staff, and establishing rigorous quality control measures with patient input.

CONCLUSION

Addressing these multi-faceted ethical challenges through targeted, trust-building strategies is essential to enhance the participation of Black individuals in health registries and clinical studies. This, in turn, can lead to more equitable representation in kidney research and more generalizable findings to reduce CKD disparities.