Embracing an "African Ethos" to facilitate African immigrants participation in medical genetics and genomics research.

BACKGROUND: Limited published research exists on perceptions and potentials for black African immigrants' participation in medical genetics and genomics research. PURPOSE: This study explores the inclination and disinclination of African immigrants to be involved in genetics and genomics research. METHODS: In-depth qualitative interviews were employed in which a sample of black African immigrants 18 years and older (n = 34) were interviewed. DISCUSSION: Barriers included contrary beliefs and customs about disease and the human body that differs from Western conceptions, and lack of genuine connection to the health care system. Facilitators included promotion of an "African ethos," wherein Africans unite with one another in a communal extension of self and robust community involvement across the life span of genetic studies. CONCLUSION: It is important for researchers and genetic counselors to understand the sociocultural underpinnings of African immigrants about genetics and genomics research as an initial step to encouraging their participation.

Enhancing the participation of african americans in health-related genetic research: findings of a collaborative academic and community-based research study.

The involvement of African Americans in research has long been expressed as a concern by the scientific community. While efforts have been undertaken to identify factors inhibiting the participation of African Americans in health-related research, few efforts have been undertaken to have highlight factors associated with their engagement of health-related research. An exploratory study of factors presumed to be associated with participation in health-related research was conducted among a nonprobability sample of African Americans (n = 212) from a large urban community in the Midwest. The study was guided by a framework that hypothesized the influence of knowledge, beliefs, and perceptions about genetics and the involvement of providers in decision-making on willingness to participate in health-related genetic research. The results revealed that knowledge, beliefs, and perceptions about genetics and the involvement of providers were associated with willingness to engage in health-related genetic research (P < .05). The most interesting, however, was that 88.7% of the participants who had not previously been involved in a health-related study who expressed a willingness to participate reported that they "had never been asked." Study findings suggest the need for research that further examines factors associated with the involvement of African Americans in health-related genetic research.

Reflections and perspectives of African-American community leaders regarding genetics and genomics research: sentiment and wisdom of Sankofa.

Advances in genetic and genomic research are shifting the typical disease timeline. For those afflicted by disease and for population groups known to experience excess disease-related morbidity and mortality, the ability to use genetics and genomics to predict an individuals' predisposition for developing a disease and/or to anticipate an individual's response to treatments holds tremendous promise. Over the past two decades several public and private institutions within the United States have been established for the purpose of collecting and storing biological specimens for the purpose of conducting genetic/genomic research. Multiple reports indicate that the involvement of racial/ethnic minority participants in these bio-repositories is limited. Little is known about the willingness of African-Americans, one of the largest and most vulnerable racial/ethnic population groups, to participate in genetic research, genomic research, and to contribute biological specimens to bio-repositories. An exploratory study was undertaken using principles of community engagement and community-based participatory research to examine the perspectives of leaders within the African-American community about participation in genetics research, genomics research, and bio-banking. Semi-structured focus groups with twenty-one African-American community leaders were the primary means of gathering the study data. Reflections and commentary of the community leaders were interspersed with sentiments of "Sankofa." The emergent themes, health-related disparities, historical injustices in medical research, the promise of genetic and genomic research, and genetics/genomic research engagement, implicated the importance of conducting genetics/genomics research in the context of the community interdependent with efforts to address determinants of health and health disparities.

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

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.

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

BACKGROUND: The emergence of DNA biobanks and the power they lend to genomics research promise substantial advances in disease prevention and treatment. Greater participation of racial/ethnic minority populations is necessary to assure a future of personalized medicine for all. PURPOSE: The purpose of this study was to explore perspectives on genomics research and DNA biobanking among black African immigrants, an often overlooked US subpopulation. METHODS: As part of a larger staged study using community-based participatory research (CBPR) methods, we conducted four focus groups with 27 leaders in the black African immigrant community, exploring perceptions about genomics, barriers, and facilitators to participation in DNA biobanks and ethical ways to engage communities. FINDINGS/DISCUSSION: Prominent in their views on genomics research was the legacy of colonial mistreatment and exploitation by Western researchers in their home countries in sub-Saharan Africa. The central dilemma for participants was balancing responsibilities to protect their people from harm and to find solutions for African generations to come. They insisted that nothing short of a transformation of research practice would elicit the full and sustained participation of African immigrants in the genomics enterprise. CONCLUSION: To better align practice and policy in the field of genomics research and DNA biobanking with values expressed by African immigrant leaders, it is recommended that the field adopt a CBPR model for research and a benefit-sharing model for policy.