Organ Donation for Research Biobanking Among Historically Marginalized Racial and Ethnic Groups: A Systematic Review.

IMPORTANCE

Research biobanks of human cells and tissues, particularly tissues accessible only after death, are crucial for advancing the understanding of human pathophysiological function. Research biobanks are bereft of tissues from individuals of diverse races and ethnicities, thus limiting the generalizability of biobank findings.

OBJECTIVE

To evaluate the barriers and facilitators to participation in postmortem brain donation for research among individuals from historically marginalized races and ethnicities.

EVIDENCE REVIEW

The published literature in PubMed, Embase, Web of Science, and PsycINFO databases was searched from 1973 to January 1, 2024. Studies that were written in English that involved adult participants (aged ≥18 years) and explored attitudes, perceptions, and beliefs on solid organ donation were included. Studies in which organ donation was for transplant and not for research, studies examining pediatric organ donation, narratives or perspectives, and studies that did not examine attitudes or beliefs toward organ donation were excluded. Two authors independently coded and performed a thematic analysis of eligible studies.

FINDINGS

Eighteen studies met the inclusion criteria, which involved 12 124 participants across multiple self-reported races and ethnicities (eg, Black or African American, Chinese, Hispanic or Latiné, and White). Most studies (16 [89%]) evaluated perceptions, attitudes, and beliefs among Black or African American and Hispanic or Latiné individuals toward postmortem brain donation. Five themes that informed the decision to donate were identified: information and misconceptions about the organ donation process (16 studies [89%]), mistrust of the research and medical communities (9 studies [50%]), family involvement (9 studies [50%]), religious and cultural beliefs (9 studies [50%]), and altruism (7 studies [39%]). Mistrust and religious and cultural beliefs were largely barriers to considering postmortem organ donation for research. Misconceptions were common, particularly regarding the donation process and purpose of biospecimens for research. Family involvement was both a barrier and a facilitator. Altruism, particularly understanding that organ donation would benefit the participants' family, future generations, and community, was a facilitator.

CONCLUSIONS AND RELEVANCE

This systematic review suggests that sharing culturally sensitive information about the organ donation process, engagement of participants and family members in shared decision-making, and addressing barriers and facilitators to donor recruitment practices may increase participation in research biobanks of individuals from underrepresented racial and ethnic groups.