Black African immigrant community leaders' views on participation in genomics research and DNA biobanking

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.

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“…Results from phase 1 with the African immigrants have been published and are not reported in this manuscript (Buseh et al 2012).…”

Section: Methodsmentioning

confidence: 99%

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

et al. 2013

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“…However, African immigrants have reported that they would participate in research that: a) involved collaborations with African-immigrant communities; b) had potential benefit for Africans in the United States and in Africa; and c) provided assurances of confidentiality. 50 We therefore present evidencebased strategies for engaging African immigrants in research based on our research experiences.…”

Section: Cardiometabolic Health In African Immigrants -Commodore-mensmentioning

confidence: 99%

Cardiometabolic Health in African Immigrants to the United States: A Call to Re-examine Research on African-descent Populations

et al. 2015

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In the 20th century, Africans in Sub-Saharan Africa had lower rates of cardiometabolic disease than Africans who migrated. However, in the 21st century, beyond infectious diseases, the triple epidemics of obesity, diabetes and hypertension have taken hold in Africa. Therefore, Africans are acquiring these chronic diseases at different rates and different intensity prior to migration. To ensure optimal care and health outcomes, the United States practice of grouping all African-descent populations into the “Black/ African American” category without regard to country of origin masks socioeconomic and cultural differences and needs re-evaluation. Overall, research on African-descent populations would benefit from a shift from a racial to an ethnic perspective. To demonstrate the value of disaggregating data on African-descent populations, the epidemiologic transition, social, economic, and health characteristics of African immigrants are presented. Ethn Dis. 2015;25(3):373- 380.

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“…Concern extends to the validity of individual consent in the face of increasing knowledge that an individual's genomics information can contribute to information about a community, tribe, or other subpopulation. Hence the demands by some African and other developing communities for both individual and community consent is also valid (Buseh et al, 2013;Graboyes, 2010;Mello and Wolf, 2010;Wright et al, 2013).…”

Section: Governance Of Knowledge-based Innovation and Public Benefitmentioning

confidence: 99%

H3Africa and the African Life Sciences Ecosystem: Building Sustainable Innovation

Dandara

Huzair

Borda-Rodriguez

et al. 2014

OMICS: A Journal of Integrative Biology

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Interest in genomics research in African populations is experiencing exponential growth. This enthusiasm stems in part from the recognition that the genomic diversity of African populations is a window of opportunity for innovations in postgenomics medicine, ecology, and evolutionary biology. The recently launched H3Africa initiative, for example, captures the energy and momentum of this interest. This interdisciplinary socio-technical analysis highlights the challenges that have beset previous genomics research activities in Africa, and looking ahead, suggests constructive ways H3Africa and similar large scale science efforts could usefully chart a new era of genomics and life sciences research in Africa that is locally productive and globally competitive. As independent African scholars and social scientists, we propose that any serious global omics science effort, including H3Africa, aiming to build genomics research capacity and capability in Africa, needs to fund the establishment of biobanks and the genomic analyses platforms within Africa. Equally they need to prioritize community engagement and bioinformatics capability and the training of African scientists on these platforms. Historically, the financial, technological, and skills imbalance between Africa and developed countries has created exploitative frameworks of collaboration where African researchers have become merely facilitators of Western funded and conceived research agendas involving offshore expatriation of samples. Not surprisingly, very little funding was allocated to infrastructure and human capital development in the past. Moving forward, capacity building should materialize throughout the entire knowledge co-production trajectory: idea generation (e.g., brainstorming workshops for innovative hypotheses development by African scientists), data generation (e.g., genome sequencing), and high-throughput data analysis and contextualization. Additionally, building skills for political science scholarship that questions the unchecked assumptions of the innovation performers be they funders, scientists, and social scientists, would enable collective innovation that is truly sustainable, ethical, and robust.

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Black African immigrant community leaders' views on participation in genomics research and DNA biobanking

Cited by 43 publications

References 29 publications

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

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

Cardiometabolic Health in African Immigrants to the United States: A Call to Re-examine Research on African-descent Populations

H3Africa and the African Life Sciences Ecosystem: Building Sustainable Innovation

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