Increasing health equity through biospecimen research: Identification of factors that influence willingness of Native Americans to donate biospecimens

Prev Med Rep. 2021 Jan 7;21:101311. doi: 10.1016/j.pmedr.2021.101311. eCollection 2021 Mar.

Abstract

American Indian and Alaska Native (AI/AN) people are underrepresented in biomedical research, particularly in biospecimen research, yet little research has been conducted to assess AI/AN attitudes about biospecimen donation. Survey data were collected from 278 AI/AN people in Seattle, Washington in 2016 to assess general willingness to donate, background characteristics related to willingness, and circumstances that would increase or decrease willingness to donate biospecimens. Less than half (43%) of participants were willing to donate. General willingness was related to past donation, and trust in how researchers use and store biospecimens. However, willingness to donate for cancer research was 76%. Fear of research exploitation and spiritual beliefs decreased willingness. Among those who were generally unwilling to donate, willingness increased if the biobank was run by a Native American organization, if the participant or family member had cancer and this was the disease being studied, if the community was involved in developing, reviewing, and approving the research, and if the expertise of researchers was known. Among those who were willing, willingness decreased if they had never heard of the research organization, and if the biobank was run by the federal government. Participation of AI/AN people in biobanking initiatives is critical to address health inequities and improve the health of AI/AN people, realize personalized medicine goals, and address the limited generalizability of current clinical and biospecimen research. These results highlight areas in which interventions could be developed to increase AI/AN donation of biospecimens for research with the ultimate goal of reducing health disparities.

Keywords: American Indian/Alaska Native; Biobanks; Biospecimen collection; Health disparities; Research participation.