Newswise 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.

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 Lackss 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 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.

Read this article:
Genetic Research Among People of Color: a Question of Trust

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