illustration depicting genetic diversity

The Truth Hurts: DNA Testing Has Not Been Racially Inclusive

Last year, an intern on our team drafted a blog post about genetic diversity titled “The Truth Hurts” that was left unpublished because, honestly, we were uncomfortable about how it might be received. The reality is that by not publishing that post, we were contributing to the racism that is plaguing our society.

The Nebula team has spent the last week listening and trying to understand how we can best help going forward. Today, we decided to publish the post in support of the black community.  It’s time we all step out of our comfort zones, and take a stance about what we believe in.

As a genetic testing company, we’re committed to make the black community feel comfortable in and through science. We’re committed to making genetic testing accessible to everyone.

We stand in solidarity with and will amplify the voices of black people.

#Blacklivesmatter
– The Nebula Team

Lizzo makes a fairly good point about DNA testing.

“I just took a DNA test, turns out I’m 100% T H A T  B…..!” is the opening line from one of 2019’s most successful songs: “Truth Hurts”. Melissa Viviane Jefferson, more professionally known as Lizzo, topped the music charts for a consecutive seven weeks. Whether it’s flowing from our car radios or echoing in our ears from our headphones, everyone’s favorite self-love anthem stood as the longest-running solo no. 1 hit by a female rapper.

Last year, Lizzo was one of many rising African American female artists. Lizzo’s inclusive messages to fans stretch from body positivity to embracing emotional vulnerability, a result of the “Juice” star’s previous struggles with loving herself in a world that supports limited types of beauty and success. 

Thus, Lizzo’s songs are typically aimed to help uplift her fans, specifically women of color. In an interview with Billboard’s reporter Stephen Daw, Lizzo explains that she will always stand up for the “underrepresented”. Being both a minority and in the spotlight, Lizzo feels a responsibility to “fight for everyone else” who may look and act just like her. And though Lizzo’s catchy, feel-good songs mostly characterize a sassy nature, her experiences as a young and black woman in America has created a voice for those silenced. And her truth is an important one, as it captures the essence of the struggles every-day African American women face, an experience that has been historically undermined and reduced to stereotype.

But the music industry isn’t the only field that requires a serious transformation in racial representation.

The ‘truth’ is that genetic databases within scientific research lack racial diversity too. Though over 26 million individuals have taken some kind of genetic testing, an overwhelming majority are white: 78% are of European descent to be exact (according to a recent study in Cell). However, Europeans and their descendants make-up a mere 16% of the human population. This means that the data stored in the genome-wide association study (GWAS) catalog and made available for public source are inherently, heavily, racially biased which can often lead to misdiagnosed conditions or prescribed treatments for non-European individuals.

Genetic testing is quickly becoming a medical instrument to identify variation within our DNA that may influence possible conditions, traits, and/or diseases we are predisposed to. Though the human population shares about 99.9% of their DNA, the 0.1% that varies can make all the difference between a gene that helps preserve someone’s health or put them at an increased risk of developing a certain disease.

Being racially non-inclusive hurts everyone.

Race is not a biological construct and is not encoded in our DNA, but rather a complex social construct that describes both self-identification and social recognition. However, there are genetic variants that statistically correlate more within particular ethnic groups. For example, sickle cell disease is more common in people of African [American] or Mediterranean ancestry.  Currently, our genetic databases do a social and economic disservice in representing that vast diversity within the human species.

Novel DNA analyses help us better understand and even predict the risk of certain diseases including cancer, diabetes, and vascular conditions. However, since these complex DNA analyses depend on the genetic databases of mostly individuals with European ancestry, the tests are inherently going to be less accurate for those that fall into other racial groups. This includes African Americans, Hispanics, Asians, Native Hawaiians or other Pacific Islanders, as well as American Indians or Alaska Natives.

And genetic disparities within the science field isn’t a new conversation.

Medical research has a long and troubled racial history, exemplified in the notorious 1972 Tuskegee Syphilis Experiment where 325 black men died from syphilis as a result of medical neglect. A recent research study reviewing over 150 genomic studies suggests that racial as well as ethnic disparities in American health care may be a consequence of provider and institutional bias. However, there is no scientifically sound way to exactly quantify all non-clinical impacts of race, socioeconomic class, culture, gender, sexuality, and more.

Frankly, Lizzo couldn’t have put it any better — the ‘truth hurts’: Not having racially diverse populations further exacerbates health inequalities and hurts us in the long run.

As a result, individuals within specific racial groups are more likely to become sicker, suffer long, and even increase their mortality rate with certain health conditions just because of their race. For instance, compared to their Non-Hispanic white counterparts, African Americans are typically 25-72% more likely to die from stroke, breast cancer, heart disease, and diabetes.  And that’s just the beginning. More genetically diversified data would simply be more scientifically useful and would help create more accurate medicinal practices as well as more specific treatments for all individuals. A mutation that increases the risk for breast cancer may be much more frequent among African Americans, but if a study focuses on mainly white individuals, the researcher may miss an important or even ground-breaking find.

So… what can we do about it?

The current lack of diversity within genetics research is ironically depreciating our very knowledge on the thing we wish to know more about: Human DNA. If we want to learn more about genetic variants or diversity in our DNA that may predispose us to debilitating diseases, naturally we will need to have a more in-depth understanding of racial uniqueness. The importance of diversity and inclusion in genomic research is currently motivated by not only a matter of social justice, but for a scientific imperative.

Genetic inclusivity would lead to a better understanding of the genetic basis of diseases.

Racial inclusivity is currently being promoted by many genetic testers striving to update their models to further improve the accuracy of their tests. In the United States, the National Institutes of Health, or NIH, have specific policies and guidelines on the inclusion of women and minorities within clinical research. Specifically an effort called “All of Us” aims to include Americans with diverse backgrounds including gender, sexual orientation, and of course ethnicity and race. There are some specific, long-term study cohorts funded by the NIH for the Hispanic Community. Furthermore, the National Cancer Institute launched their largest ever study of breast cancer genetics in black woman. In Uganda, a collaborative effort called Neuropsychiatric Genetics of African Populations-Psychosis, or NeuroGAP-Psychosis, is attempting to analyze the genetic data of at least 35,000 people in Ethiopia, Kenya, South Africa, and Uganda: something that has never been done before at this scale.

So, Lizzo’s light-hearted one-liner raises an inquiry into a very important ethical dilemma: What are we going to do about misrepresentation within the scientific field?

I raise an important answer: be “T H A T  B…..”. Right now, not enough is being done. Encourage black communities to participate in scientific testing and create a space for them to feel more comfortable doing so. Just to start, that includes checking subconscious biases and actively seeking resources to be a better healthcare provider. As a young, black woman myself working within the scientific community, a lack of diversity is everywhere. It’s not just about genetics, it’s not just about a song or science at all really:

It’s about being racially inclusive for everything so that we learn about each other’s experiences and exercise kindness.

Representing more genetically diverse participants is one of those ways. It is more important now than ever for minority people to participate. Having a better understanding of your DNA may just lead us one step further in the right direction to creating a happier, healthier place for everyone no matter how you identify, what you look like, or where you come from. With your help, we and other genetic research companies can provide more accurate and inclusive reports of each individual.

Our DNA tests may not be as hype as Lizzo’s latest Video Music Awards performance, but knowing that you’re not alone and that there are people like me within the scientific community rooting for you to help increase genetic diversity in testing can help. 

Written by Kaline Langley
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