When DNA Testing Gives You a Past and Threatens Your Future

The troubling risks of genetic testing while Black

Credit: Science Photo Library/Getty Images

When I was a senior in college, I won the random prize of a DNA test from African Ancestry, a genealogical DNA testing company that provides family history information for people of African descent. My father took the MatriClan test, which traced our ancestry back to Africa through the mitochondrial DNA passed down from mothers to their children. Several months later, the results came back: My family on my father’s mother’s side hails from the Mende people of Sierra Leone.

What does this mean for me?

It means I now know where my family comes from. If there are health problems specific to folks from this region, I can ask for certain tests from my doctor. If I want to know where a certain physical feature found in our family comes from, I might find it among images of these people.

It also means my DNA is now part of a large collection of genetic information held by a largely unregulated industry that has a history of sharing genetic data with the FBI as well as with other third parties for research purposes.

If I lived in a country where I trusted that the government, law enforcement, and large corporations all have my best interests in mind when it comes to how their actions might affect me, this wouldn’t be a problem. But I’m a young, queer Black woman living in 2019 America — I do not have that trust. Not to mention there is a mostly ignored history of race- and class-based eugenics in the United States that the nation has never truly confronted and still exists in different forms today. That movement could be greatly bolstered with genetic information from different groups in this country.

So why do African Americans continue to use DNA testing to learn where they come from? And how does that tie into the history and possible future of eugenics in the United States?

Reclaiming lost knowledge of the homeland for African Americans is a form of healing

For African Americans, discovering geographic origins, even in the absence of current cultural ties to ancestral homelands, can be transformative. The transatlantic slave trade cut our history brutally short. Unlike folks from other parts of the world, African Americans typically don’t have long family histories we can point to when answering the question “Where do you come from?” We are not African and we are often not considered American either. In many ways, we remain as adrift as our enslaved ancestors were when they were violently ripped from their homes and their peoples.

Some of us need only go back five generations before reaching enslaved ancestors. But following that trail is challenging: scarce records, the treatment of slaves as property rather than people, rape, and family dislocation all create significant holes in the family tree. It is rare for an African American person to be able to trace their ancestry all the way back to the region in Africa where their first enslaved ancestor was taken from.

For this reason, genetic testing as a route to discovering one’s true heritage is extremely compelling. Those who have spent time and money following their genetic roots say that restoring that sense of identity creates a powerful foundation from which a person can engage with the world. The ancestors of African Americans alive today often endured incomparable horrors to survive. Having confirmation of these atrocities can remind descendants of the incredible models of survival from which they come, and even provide frameworks for future survival.

Knowing one’s genetic heritage can incentivize people to establish relationships with folks on the continent, and to begin healing old wounds passed down from generation to generation. The testimonials from African Ancestry show how life-changing the discovery can be, and what pride and power can come from knowing one’s original roots. The surge of heritage travel, or trips where folks travel back to their newfound countries of origin, shows how compelling this knowledge can be.

Clearly the healing that can come from this knowledge is incredibly important. But there is a darker side to the path that leads to this healing, a side that edges uncomfortably close to scientific racism. It raises the question of whether the positives of discovering one’s ancestral homeland outweigh the potential negatives of leaving one’s entire genetic code in the hands of those who historically have used that type of information to justify mass discrimination.

Genetic information can drive personalized knowledge, but also personalized discrimination

There are many incredible uses of the genetic knowledge produced by DNA testing. The Golden State Killer, for example, was caught using the profiles from an online genealogy company. DNA from crime scenes was used to create a genetic profile, which was then traced to the killer using the DNA of distant relatives who had submitted their information to the genealogy site GEDmatch.com. Customized healthcare that can change the outcome of individuals’ lives can also become ever more possible as great amounts of genetic data is submitted to databases that are available to health researchers and providers.

At the same time, the United States has an extremely questionable history when it comes to the way science treats minorities. One need only look at the 40-year-long Tuskegee Syphilis Study or Henrietta Lacks’ immortal cells to see this.

The Tuskegee Syphilis Study was an experiment conducted on 600 Black men without their informed consent. About two-thirds of the subjects had syphilis but none were treated for the disease, even though the antibiotic penicillin — a highly effective treatment for syphilis — was widely available. The purpose of the experiment? Simply to study the progression of the deadly disease.

Henrietta Lacks was a 29-year-old Black woman who gave birth at Johns Hopkins Hospital in Baltimore in 1951, and died shortly after of metastatic cervical cancer. She had a severe hemorrhage after giving birth, and the hospital took tissue samples from her cervix without her permission. Her tissue cells turned out to be “immortal,” since they could live and reproduce indefinitely, and have been in constant use in medical research around the world in the years since her death. Her family didn’t know anything about this until the 1970s, and were never given the opportunity to consent to the use of her cells in such extensive research.

These two well-known cases are examples of the abuse of genetic information occurring well before the advent of modern-day science that allows for genealogical DNA testing. These abuses are directly related to a third, older example of genetic discrimination in America — the forced sterilizations of primarily people of color and poor people starting in the late 19th century. These sterilizations were one cornerstone of eugenics, or the supposed science of breeding better men.

As long as this kind of genetic testing remains expensive, it is essentially a modern form of economics-based eugenics.

How eugenics could make a comeback with the growth of available genetic information

Eugenics in the United States is a subject not widely discussed, but it has a nasty history. The development of the science of genetics has its roots in eugenics. Eugenics, one means of controlling what society looks like, attempts to limit bodily self-determination. It’s a movement that is still seen in today’s conversations on reproductive justice. Sterilization policies from the United States inspired Nazi Germany’s eugenics programs, the same programs that led to mass genocide under Hitler’s rule.

This was all possible well before the widespread collection of genetic information that is one byproduct of DNA testing.

Today’s science cites genetic links for everything from character traits to athleticism. If we knew exactly what genes controlled which characteristics and could opt out of passing those on to our children, why wouldn’t we? The popular term for children born from this type of genetic manipulation is designer babies, and this is already happening.

MIT Technology Review reported last year on a family who decided to use pre-implantation genetic testing to make sure their children did not have a mutation that could cause dystonia, a condition that causes uncontrollable muscular contractions. It’s an incredibly expensive procedure, and one that at first blush is entirely positive. Who wouldn’t opt into making sure a child would be born as healthy as possible?

The problem is that not everybody can. And as the article points out, what happens when genetic disease is something that only happens to some people? That could introduce a new health divide based on access to certain technology that is entirely dependent on wealth. As long as this kind of genetic testing remains expensive, it is essentially a modern form of economics-based eugenics.

We can look at this another way. Identifying individuals based on genetic information could become increasingly easy as more people enter their information into the databases via DNA tests. Even when the only information an individual will receive concerns their genealogy, their DNA contains far more detailed information about their health and other personal characteristics. It isn’t far fetched to imagine a third party purchasing this knowledge — especially given the lack of regulation in this industry, and the fine print that doesn’t necessarily protect the individual in the situation — and using it to argue that people with a certain genome should not be allowed to reproduce.

Or in a truly sci-fi-inspired future, if the third party acquiring this knowledge is, for example, a drug company that manufactures vaccines, they could easily use this to increase the prices of certain vaccines that guard against genetic diseases and make cures inaccessible to populations that would be most affected by said disease. This would be an easy way to wipe out certain groups of people based on their genetic profiles.

Yes, this is a dystopian reality. But is it really so far away? And are we blindly enabling it when we voluntarily give up the most precious information about ourselves that we own — our own genetic codes?

What does this mean for African Americans going forward?

African Americans are among the most abused and discriminated against groups in the United States. Slavery, enormous wealth gaps, and police violence are just a few examples. The rise of genetic testing opens a dangerous pathway to another form of discrimination that could affect groups of all flavors: those with specific diseases, certain skin colors, and any other traits those in power believe to be detrimental to the forward movement of society as a whole.

One solution to guard against this movement is to stop the collection of genetic data that could contribute to such discrimination. But this would also mean taking away one of the only solutions presently available to African Americans to help trace our familial roots back beyond the moment that slavery brought our ancestors to the United States. It would also have to be a movement on such a scale that I have a hard time believing it could be effective in time to stop any potential negative side effects.

Another solution is to regulate industries that deal with genetic data as strongly as we regulate the pharmaceutical industry, for example. This allows us to continue accessing the history and connections that DNA testing gives us, but would again require concerted and coordinated pressure on these industries that doesn’t currently exist.

In the absence or presence of either of these solutions, facing the reality that the specter of eugenics is again hovering at the edge of U.S. policies is of paramount importance. For while African Americans are finally tracing our roots and understanding the foundations of our ancestors, the science that facilitates this clarity around our history could also be used to dramatically shorten our futures.