Genetic research: A matter of trust

From left to right: Back, Aaron Buseh, Associate Professor and Project principal investigator; Fessahaye Mebrahtu, executive director, PACA; Seated in front: Christiana Attere, outreach/volunteer manager at PACA; Paulette Bangura, board member, PACA. (Photo by Troye Fox)

Because genetic research holds promise for the prevention and treatment of diseases, it is important that ethnic minority populations become involved, says Aaron Buseh, an associate professor of nursing at the University of Wisconsin-Milwaukee (UWM).

For the past three years, Buseh and a team of UWM researchers have been working with community partners to better understand how to engage African Americans and African immigrants in genetic research and find ways to increase their participation.

Buseh led the effort, called the Community Engagement in Genetics/ Genomics Project, with the assistance of professors Sandra Underwood and Patricia Stevens, and a group of researchers from the College of Nursing.

The Black Health Coalition of Wisconsin and the Pan African Community Association (PACA) were partners in the community based participatory research, which was funded by the Wisconsin Genomics Initiative and the UWM Graduate School.

More than 400 African Americans and African immigrants from 29 countries living in Milwaukee took part. With the help of the community partners, the researchers were able to conduct focus groups and in-depth interviews, and do surveys.

“We would not have been able to accomplish this project if we did not have their participation and partnership,” says Buseh.

The researchers are now analyzing the data. They have presented some initial findings to local community gatherings, as well as at a number of national conferences and in several articles submitted to or published in nursing and genetics journals.

Differences, and common concerns.

There were similarities and differences between the African American and African immigrant groups. Both had concerns about privacy and a legacy of mistrust of the medical community.

African Americans frequently brought up cases in which genetic research could potentially harm members of their community, or make others rich while they receive no benefit.

Against the backdrop of infamous events like the Tuskegee Syphilis Study and the Henrietta Lacks case, participants described a local history of ill feelings about researchers who come into the African American community to recruit study subjects.

A community leader remarked: “We are usually invited into the research process only ‘after the fact,’ when decisions about focus, design and outcomes have already been made.

Sometimes, researchers use the leaders merely as ‘entry points’ to the ‘bodies’ needed to do the research, and neglect to come back to share the results with our communities.”

Colonialism and medical research exploitation in their homelands in sub- Saharan Africa impacted the attitudes of African immigrants, says Buseh.

One participant remarked: “White folks went to Africa to do research on AIDS drugs, and the data got shipped back to the U.S. Drug companies made millions. But a lot of poor people were recruited into these studies, and they are the last ones to receive the benefit. It is wrong.”

Understanding the attitudes and concerns within these communities about research participation is an important first step in recruiting them for genetic and other medical studies, says Buseh.

“We need better understanding about this lack of participation, and we need to find ways to engage and encourage members of these communities to take part,” says Buseh.

“There are lots of benefits from genetic research for prevention and opportunities for medicine tailored to chronic illnesses in the African immigrant and African American communities.”

While cautious because of past issues, community members themselves do see the value of genetic research, says Buseh. As one community leader told them: “We want them to discover what can save the lives of our children and our children’s children.

We will always be behind if we do not participate. They will have solutions for the diseases of whites, but not for the diseases we have.”

Seeking a seat at the table African immigrants and African Americans in the study had some common recommendations for ways to engage and encourage more participation in genetic research in their communities, says Buseh.

They wanted the research process to be transparent, to be able to learn about the results of research and to share in the benefits as much as possible.

“Both groups wanted to have a seat at the table,” he adds.

“They’re looking for genuine collaboration. They want to be part of a project from its onset and make decisions, especially in an area that they view as affecting the larger community. They want to protect their people from harm.”