Community leaders’ perspectives on engaging African Americans in biobanks and other human genetics initiatives

Abstract

There is limited information about what African Americans think about biobanks and the ethical questions surrounding them. Likewise, there is a gap in capacity to successfully enroll African Americans as biobank donors. The purposes of this community-based participatory study were to: (a) explore African Americans' perspectives on genetics/genomic research, (b) understand facilitators and barriers to participation in such studies, and (c) enlist their ideas about how to attract and sustain engagement of African Americans in genetics initiatives. As the first phase in a mixed methods study, we conducted four focus groups with 21 African American community leaders in one US Midwest city. The sample consisted of executive directors of community organizations and prominent community activists. Data were analyzed thematically. Skepticism about biomedical research and lack of trust characterized discussions about biomedical research and biobanks. The Tuskegee Untreated Syphilis Study and the Henrietta Lacks case influenced their desire to protect their community from harm and exploitation. Connections between genetics and family history made genetics/genomics research personal, pitting intrusion into private affairs against solutions. Participants also expressed concerns about ethical issues involved in genomics research, calling attention to how research had previously been conducted in their community. Participants hoped personalized medicine might bring health benefits to their people and proposed African American communities have a "seat at the table." They called for basic respect, authentic collaboration, bidirectional education, transparency and prerogative, and meaningful benefits and remuneration. Key to building trust and overcoming African Americans' trepidation and resistance to participation in biobanks are early and persistent engagement with the community, partnerships with community stakeholders to map research priorities, ethical conduct of research, and a guarantee of equitable distribution of benefits from genomics discoveries.

Perceptions toward establishing a biobank and clinical data warehouse: Voices from the community

“…In reference to how the participants wanted educational materials regarding the Biobank disseminated at our institution, they recommended that more be information presented in venues sponsored by the faith community, group educational interaction, direct patient education and social media. Our work supports the idea of community consultation and engagement because understanding the purpose of biobank and the concept of informed consent process is vital to ensuring its success [13,19,38] .…”

“…For example, in a 2007 study assessing the reasons why acute care patients with cardiovascular disease chose non-participation in Biobanks, results indicated that both age and certain minority demographic characteristics were associated with less likelihood of participation; with the main reason being wanting to avoid a blood draw [3] . Developers must also acknowledge the lack of trust by ethnic minority groups toward medical institutions [19,32] . Over the years, as more Biobanks have been created, the idea of community consultation has become a necessity as community consultation incorporates the ideas, concerns and needs of the patients into the development of Biobanks.…”

“…In order for DNA Biobanks to be a valuable reservoir of genetic information, large numbers of participants from all racial and ethnic backgrounds need to be included to ensure equal representation from all populations [2] . Although studies conducted to engage and consult community members in advance of establishing Biobanks have documented strong support from the public [11][12][13][14][15][16][17] , there still exists distrust among some ethnic minorities [18,19] . Further, few have included recommendations from the public to tailor an educational program for prospective donors to make an informed decision prior to contributing to a Biobank and CDW.…”

Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications

“…Studies have found that factors that facilitate participation in genetic research include respect of community, authentic collaboration, bidirectional education, including community members in the recruitment process, transparency, and the potential for meaningful benefits . As with medical research in general, establishing interpersonal trust between the researchers and the community is one of the major factors in engaging AAs.…”

Towards a more representative morphology: clinical and ethical considerations for including diverse populations in diagnostic genetic atlases

“…Practically speaking, the consent process needs to address the specific informational needs of each community involved (for example, local literacy levels and educational attainment). 35 A well-designed, transparent consent process that is vetted by local leadership and local regulatory experts is more likely to be perceived as trustworthy by individual participants and their communities. In addition to their involvement in writing consent forms, local collaborators should also be directly involved in identifying appropriate participants within their locales.…”