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Community-based Approaches Help Increase Minority Participation in Genomic Research

WASHINGTON, DC (GenomeWeb) – By taking a community-based approach, researchers were able to boost the number of minorities who are typically underrepresented in genomic research in their studies, as they discussed during a session at the Why We Can't Wait: Conference to Eliminate Health Disparities in Genome Medicine.

Minorities are not well represented in genomics research, and by not including them researchers may be missing key genetic variations, said Carlos Bustamante, a professor at Stanford University and one of the meeting organizers.

"Not only are you leaving a lot of biology on the table [if you don't include a range of populations in your studies], you are going to make wrong recommendations," he added.

But there are a number of challenges in recruiting minorities to participate in research, including community distrust and disenfranchisement.

Community-based participatory research, the University of Miami's Erin Kobetz said, aims to breach research barriers that "render traditional research methods ineffective."

Not only can community-based participatory research help connect researchers to patients and potential research participants, such an approach can also enable researchers to tap community knowledge to ask questions and pursue avenues of study that they may have otherwise overlooked.

To examine genetic reasons why African-American women have a higher risk of developing aggressive breast cancer, often at young ages, the University at Buffalo's Heather Ochs-Balcom set out to enroll women from some 125 families by collaborating with the National Witness Project, a community-based initiative that aims to increase cancer screening awareness among African-American women.

Partly due to the family-based design of her study — Ochs-Balcom was searching for female African-American breast cancer survivors with at least one other affected family who both wanted to participate — she soon ran into recruiting problems as her numbers hung around 30 families, far fewer than her goal.

It turns out, she said, that excitement for cancer screening doesn't necessarily translate into excitement for participating in research, though a good portion of National Witness Project families did participate, making up some 29 percent of research participants.

But by being nimble and drawing on other community networks such as the Love Army of Women, Little Rock Spit for the Cure, the Women's Circle of Health Study, and more, Ochs-Balcom was able to reach her recruitment goal.

To do this, though, it was expensive, as she and her colleagues had to travel to various locations to meet with potential research participants.

Through this multi-pronged approach, which she and her colleagues also described in the Journal of Community Genetics this summer, she was able to enroll the numbers she needed, and she argued, improve its representation of the community as the African-American women recruited from these various sources differed in their education levels, BMIs, and family size.

Miami's Kobetz, meanwhile, established a partnership called Patnè en Aksyon —meaning Partners in Action — with the Haitian community in Miami to engage them in research.

Haitian women there have a four times greater rate of cervical cancer than women more generally, though this difference in cancer rate is often obscured, Kobetz noted, when data on Haitian women are folded into African Americans more broadly.

By working with community members, she learned that Haitian women are generally uncomfortable with getting Pap smears for cervical cancer screening, as the procedure is thought to be immodest. But by turning to a cervical self-sampler, which can be used in the privacy of one's own home, she was able to collect some 600 samples, including from women from Little Haiti. These samples were then genotyped for HPV.

Additionally, after finding Haitian women have a higher prevalence of HPV, Kobetz told members of the community that, but they said that she had to be wrong as many Haitian women rely on twalet deba, a feminine hygiene practice, beginning at an early age.

Kobetz tested the effect of some of the herbs used in that practice on various cell lines, finding that most induced apoptosis, but that one — pwa kongo — leads to uncontrolled cell growth.

She and her colleagues are now looking into how twalet deba affects the vaginal microbiome in Haitian women with and without HPV infections, as clinical data has suggested that Haitian women suffer from vaginal dysbiosis.

"Community members have to be at the table, otherwise we lose the privilege of their insight," she said.