The University of Wisconsin–Milwaukee College of Nursing has received $237,000 from the Wisconsin Genomics Institute (WGI) for a yearlong study of ways to engage the African-American and African immigrant communities in Milwaukee in genetic research.
The project is one of the first to look at ways of involving these communities in important genetic research that could eventually help improve individual health, says Aaron Buseh, associate professor of nursing, who is principal investigator for the project.
The study will look at attitudes and institutional barriers that impact the communities’ attitudes toward genetic research, adds Sandra Millon Underwood, professor of nursing and co-principal investigator.
African-Americans suffer from higher levels of certain chronic diseases like hypertension, sickle cell anemia and some cancers, she adds, and could benefit from genomics research that targets the genetic factors involved in these diseases. In particular, by comparing health conditions in African-Americans and those more recently arrived from Africa, researchers could begin to identify which factors are genetic and which are related to environment or lifestyle, explains Buseh.
However, many African-Americans are wary of both the health care system and health researchers, according to Buseh and Underwood.
“It comes down to trust,” says Buseh. For people to provide informed consent for research, he adds, they have to understand the value of the research and trust that the researchers will use the information to benefit their community.
Health care disparities and historical mistreatment by earlier researchers contribute to the concerns, says Underwood. In addition, many in these communities don’t have a primary health care provider, making it more challenging to compile electronic records and involve them in research.
The UWM research team, which also includes experts in health informatics, genetics and community health care, will lay the groundwork for future links between the community and researchers. In this first year, they will gather information from key community leaders, do in-depth interviews/focus groups with residents, and conduct surveys with a sample group of African and African-American community members.
The goal will be to determine how the characteristics of these groups impact their willingness to participate in genomics/genetics research; describe the knowledge and attitudes of community members; and identify facilitators and barriers to sustained genetics research in these communities.
Very few studies have looked at the attitudes of African-Americans and African immigrants toward research as a way of finding effective ways of involving them in genetics research, according to Sally Lundeen, dean of the College of Nursing and a member of the genomics research team. The eventual goal of the College of Nursing’s work would be to develop similar research studies on community barriers and facilitators with other diverse urban and ethnic communities such as American Indian, Hmong or Latino groups to help improve collaboration and participation in genetics research.
The College of Nursing is one of four partners in the Wisconsin Genomics Initiative, which is focused on advancing personalized healthcare through genetic research. The College of Nursing brings its expertise in working with these diverse communities to the project, helping lay the groundwork for future genetics research. Other partners are the Medical College of Wisconsin, the University of Wisconsin School of Medicine and Public Health and the Marshfield Clinic.