CODE 11.2021
Written By nonstudio
DECOLONIZING GENETIC CODE   BY JANINA JEFF  11.2021

“Not everything that is faced can be changed, but nothing can be changed until it is faced.” —James Baldwin

For the longest time people have asked me, “What are you?”

It’s an offensive question. What people are really trying to ask is about my racial or ethnic identity. There’s an obsession with how different we are, and people often use racial categories to fit others into their versions of a social hierarchy. This can come in the form of questions or comments like:

“Just because I’m tall and Black doesn’t mean I’m somehow programmed to play basketball.”

“So what do you mix with anyway? Are you Spanish? You from Africa? Like, where were you from?”

“My hair is curly because I have Indian in my family.”

When people ask me what I am, I like to remind them that I’m actually human. And most importantly, that we are more alike than we are different. In fact, our genomes are 99.9 percent the same. As a geneticist, I started to see the connections between the genome and our social lives. But when I say that we’re 99.9 percent the same, you might ask, “What do you mean by that? And what exactly is a genome?” In this clip from In Those Genes, I explain:


In 2018, Spotify invited me to the Sound Up Boot Camp, which allowed me to start my podcast. The podcast aims to make genetics accessible using black culture analogies and having conversations with kindred spirits. Our first season called “46 Chromosomes and a Mule” centered on commercial genetic testing like 23andMe and Ancestry.com. We explore topics like testing processes, privacy, test engagement, and community reception.

I am extremely passionate about breaking down barriers that suggest, “You must have a PhD; you must attend this school; you must be able to conduct scientific research to participate in science.” Many journal articles and books that have been published on genetic education are written in English. Most scientific conferences fall under the traditional academic culture, which is largely full of white supremacy, patriarchy, and capitalism. So I set out to tackle the questions, “How do we decolonize the language of science?” “Why do we need to include diversity?” “Why is it important that we have technology that is not just Eurocentric?”

But I think the real question that most of us and even myself wanted to know is, “Why do we even have to do this? Why do we have to decolonize the language of science?” The answer stems from the history of medical exploitation and stigmatization in the black community, which has shaped the African American community’s engagement with science and the healthcare industry.

One example is Henrietta Lacks, a black woman who significantly contributed to science without her consent. Lacks was diagnosed with ovarian cancer by a doctor and her cancerous cells were extracted and used for research. We can thank Henrietta Lacks for developments like the sequencing of the human genome, eradication of polio, and the creation of the HPV vaccine. In some cases, “HeLa cells” were even used to create some of the COVID-19 vaccines. Using her cells, we learned that we have 23 chromosomes. There would be no 23andMe if it wasn't for Henrietta Lacks!

Another example is the recognition received by J. Marion Sims, called the father of gynecology. Sims had performed medical procedures—obstetrics, gynecology, surgical procedures—without anesthesia under the pseudoscience-based assumption that black women experience less pain than other races [1]. New York City only removed his statue from Central Park in 2018.

While the research community has historically experimented on Black bodies without consent, it has simultaneously excluded Asian and Black people from genetics research. Until 2018, the majority of genetics studies were performed on European populations. In truth, Europeans make up only a small fraction of the global population, while East Asians and South Asians make up the majority. This imbalance has huge consequences on research in clinical practice.

While we’re 0.1 percent different, that 0.1 percent can have clinical impacts. For example, the same test for the genetic variant responsible for identifying risk of the heart defect hypertrophic cardiomyopathy in people of European-descent is also used for people of African-descent. But when we look at African descent populations, we see that this genetic variant does not correlate with disease, so the test inaccurately classifies them as at-risk. This could suggest that original discoveries in European populations do not translate to other populations or the associations are not causal.

When we look at how much money is actually spent on healthcare in the United States, less money is being spent on Black people even when they are statistically more likely to be sick [2].

In order to remedy the health disparities we have to change the entire ecosystem of health care, but one of the first steps is acknowledging the unfortunate consequences of systemic racism. We have to confront our racist past to move forward as a first step.

 
 

Janina Jeff is a scientist and journalist who frames genetics research within a cultural and historical context. Her award-winning podcast In Those Genes explores how genetics can reveal the lost histories of African Americans. The episodes blend science, history, and underground hip-hop culture. Jeff is the first African American to graduate with a doctorate in Human Genetics from Vanderbilt University. Her research was focused on hunting for genetic clues for why certain diseases more often afflict populations with African ancestry. Janina gave these remarks at Biodesign Challenge Summit 2021.



 

Cite This Essay
Jeff, Janina. “Decolonizing Genetic Code.” Biodesigned: Issue 9, 11 November, 2021. Accessed [month, day, year].

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