Genetic research among ethnic minorities: A question 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)

Human genomics holds promise for prevention and tailored treatment of chronic illnesses.  At the same time, people of color, who bear a disproportionate burden of chronic illnesses, take part in genomics research at low rates.

When Aaron Buseh, associate professor of nursing, began talking to members of the African American community about their reluctance to take part in genetic research, two cases were mentioned over and over again – the Tuskegee syphilis experiments and Henrietta Lacks.

Historical photo shows participants in the Tuskegee syphilis study, who were unaware of the study’s focus and didn’t receive available treatments.

In both cases, African American subjects were involved in research without ever being informed about the goals or results, being told about potentially harmful consequences, benefiting from the research or even giving informed consent.

The 40 years of Tuskegee research abuses were exposed in the media in 1972. A 2010 book, “The Immortal Life of Henrietta Lacks,” outlined how others made huge profits from the “HeLa” line of cancer cells developed from Lacks’s genetic material, while her family lived in poverty.

For the past three years, the Community Engagement in Genetics/Genomics Project, led by Buseh, co-principal investigator Professor Sandra Underwood, Professor Patricia Stevens and a group of researchers from the College of Nursing, has been looking at the issues involved and identifying community-engagement strategies to increase the participation of African immigrants and African Americans in genomics initiatives. The Wisconsin Genomics Initiative and the UWM Graduate School funded the research.

More than 400 African Americans and African immigrants from 29 countries have been involved. Using a community-based participatory research approach (CBPR), the researchers created an academic-community partnership with the Black Health Coalition of Wisconsin and the Pan African Community Association.

Building trust through partnerships

The award-winning 2010 book, “The Immortal Life of Henrietta Lacks,” told the story of an African-American woman, whose “HeLa” cells were widely used in research. Others profited from the cells while her family lived in poverty.

These partnerships allowed them to build trust, connect with community leaders and openly discuss the ethics and privacy concerns involved in genetics research, says Buseh. With the help of these partners, the researchers were able to conduct focus groups and in-depth interviews, and reach out to the community in surveys.

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

Such academic-community partnerships are key to developing and implementing health programs, he adds.

“We have come to appreciate that community engagement is more than just holding a public meeting. It is an ongoing, interactive process that includes multiple stakeholders and brings together community members for a common purpose – in this case, genetic research and biobanking.”

The researchers are now analyzing the data. They have presented some initial findings at a number of national conferences and in several articles submitted to or published in nursing and genomics journals.

Differences, and common concerns

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

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

“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,” said one research participant. “But a lot of poor people were recruited into these studies, and they are the last ones to receive the benefit. It is wrong.”

Some African immigrants were concerned about taking part in genetics research because of cultural and religious beliefs about giving up body parts. Many also had fears the information might be used by authorities against them in legal or immigration matters.

Understanding the attitudes and concerns within these communities about research participation is an important first step to their recruitment and retention in genetics and other medical studies, says Buseh.

“We need better understanding about this lack of participation, and we need 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 genetics 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 immigrant 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.”

In the future, the researchers plan to build an interdisciplinary team that includes community partners, and seek extramural funding. The goal, says Buseh, would be to build on and expand the work the team has done so far, and develop a culturally relevant, community-based participatory genetic research initiative that includes an education program.


Community Partners

The Black Health Coalition of Wisconsin (BHCW), headed by Executive Director Patricia McManus,  focuses on improving the health status of African Americans in the State of Wisconsin and ensuring equitable and comprehensive health for all people.

Founded in 1984, the BHCW organizes and promotes the dissemination of relevant health information to the Milwaukee minority community. The ultimate goal of the BHCW is to address issues of health disparities and improve the quality of life and well-being of ethnic minority communities.

Serving as a major voice for the black community in Wisconsin, the BHCW has developed and implemented multiple community-based projects, including tobacco initiatives; HIV/AIDS counseling, testing and prevention; and infant mortality projects.

Buseh has collaborated closely with the BHCW on several health initiatives, including exploring the lived-experience issues(social stigma, disclosure challenges, quality of life) of HIV-infected urban African American men.

The Pan-African Community Association (PACA), headed by Executive Director Fessahaye Mebrahtu, was founded almost a decade ago. PACA brings together all people of African descent to preserve and enrich African cultural values through education, empowerment and dialogue.

The organization serves the needs of the greater Milwaukee Community. PACA envisions African immigrants and refugees making a smooth transition into American society, enjoying all rights and fulfilling their obligations as integral members of their community.

Like other immigrant populations, African immigrants/refugees experience physical and mental-health conditions that impact their quality of life. PACA is actively designing and implementing an array of health and social programs that address the health and well-being of African immigrants.

PACA is implementing successful programs that focus on youth and women, and is also currently implementing a major health project, Building Healthy Refugee and Immigrant Communities (BHRIC), funded by the State of Wisconsin Division of Public Health, Office of Minority Health.  Buseh serves on the organization’s board.