OPINION: Genetics research misrepresents people of color

By Bridget Ekis, Staff Reporter

On a Tuesday afternoon in “Genetics: Honors,”  I learned of yet another industry that marginalizes people of color: DNA databases.

Fernanda Weissbuch

Of the data on which scientists have been basing genetic conclusions, 78% comes from people of predominately European descent, according to an analysis published in the scientific journal Cell.

These people were recruited through an experiment known as a genome-wide association study, or GWAS. By scanning through sets of DNA, scientists are able to look for genetic variations across the genome and see if they correlate with diseases, such as asthma, cancer, heart disease and mental illnesses. The first genome-wide studies were published in the early 2000s, according to the National Institutes of Health, and studies have continued over the past two decades.

People of European descent only make up 16% of the global population, according to the Cell article, which means most of what we know today about how specific diseases are related to genetics represents white people, leaving people of color out of the equation.

People who identify as Latinx or are of African descent today account for less than 4% of people recruited into the GWAS study, according to the Cell article.

Success stories from GWAS data include: identifying genetic variations that contribute to the risk of Type 2 diabetes, Parkinson’s disease, heart disorders, obesity, Crohn’s disease and prostate cancer, published by the National Human Genome Research Institute. It has also found genetic variations alter a person’s ability to respond to antidepressants.

Making conclusions about how genetics may work with health conditions comes at a hefty cost. It leaves the discoveries made limited to benefiting only those of European descent instead of benefiting everyone.

If someone identifies as African or Latinx, the chances medical professionals or geneticists can provide accurate health information is significantly less than with white counterparts. This is because researchers are basing care off of data comprised mostly of white people.

Without diversity in genetic research, we are stunting the growth of precision medicine and clinical tests. If we continue to only examine certain sections of the population, we’re subject to miss the variability in mutations of genes.

The path to inclusive genetic research recruiting is underway, but this change will take time.

The NIH launched an initiative in 2016 called All of Us, which aims to collect one million samples from diverse individuals across the U.S. to better understand how environment, lifestyle and biology play as factors into how researchers should use precision medicine.

Other initiatives to increase diversity in the gene pool include the Human Heredity and Health in Africa Initiative and the Hispanic Community Health/Study of Latinos. However, medicine needs to gain the trust of these groups through transparency and inclusion.

In the past, scientific research has excluded marginalized people. Moving forward, this practice is unacceptable, especially in a time when people are becoming increasingly skeptical of medicine.