Investigating the racial bias in genetic research

Written by Katie Gordon

Researchers have investigated whether the underrepresentation of Hispanic/Latinx populations and racial bias in genetic research is due to an unwillingness to participate.

In recent years, there has been an increased effort for researchers to prioritize the need for diversity in genetic research. One group heavily underrepresented for genetic research is Hispanic/Latinx populations.

A research group, led by José Pérez-Ramos and Timothy Dye of the University of Rochester (NY, USA), has conducted a global study to investigate Hispanic and Latinx populations’ willingness to participate and the impact of racial bias in genetic research.

“We were interested in the determinants for people to participate in genetic research,” Dye explained. “Not only is representation in research important for accuracy of results, but it also helps improve distributional justice. If Hispanic and Latinx people are not represented, then there’s no possibility of them benefitting from all of the important genetics research that’s happening.”

The team surveyed 1718 individuals from 69 different countries and determined their likelihood of participating in genetic research. Of these respondents, 251 (14.6%) identified as Hispanic or Latin American and Caribbean (LAC).

Hispanic and LAC respondents were just as willing to participate in genetic research that involved giving a sample of their DNA as other racial groups. They also felt equally as positive about their impact as other groups.

The researchers then further classified the Hispanic/Latinx respondents based on country of birth and resistance to investigate any disparities in willingness to participate in genetic research for different Hispanic/Latinx populations.

Of those surveyed, 70% of Hispanic/Latinx individuals who still lived in LAC countries were willing to participate in genetic research. This decreased to 53% for those who had moved out of LAC countries and even further (to 46%) for those who were born and lived in non-LAC countries (mostly the USA).

Not only were Hispanic/Latinx participants born and raised in the USA less likely to participate, they also had the least positive attitudes towards genetic research, were the least trusting towards researchers and had the lowest expectations for the benefits gained from genetic research.

“It’s impossible to say right now why there are these disparities for the Hispanic and Latinx populations,” remarked Pérez-Ramos. “There need to be conscious efforts to make genetics research more representative, especially in the United States, where Hispanic and Latinx people are the largest minority population.”

Diversity in the participants of genetic research is vitally important and the exclusion of Hispanic/Latinx populations violates the Belmont Report’s court of justice. However, it is also important to ensure diversity among researchers.

“A community-oriented approach, where genetics and genomics researchers engage with the communities being studied and take the time to understand what is important to them, helps make this research successful,” Dye stated. “It is also helpful to have at least one person in the research group who speaks the language and can provide cultural relevance.”

The researchers hope to follow on from this investigation by looking into the reasons behind the mistrust of researchers in certain populations.

“Among the countries we studied, there are lots of differences in views of and past experiences with the research enterprise,” commented Dye. “It’s important for researchers to engage with and understand what is important to each community, and to treat participants equitably when offering and implementing genetics research opportunities.”

Check out the rest of our coverage from ASHG 2019 here.