Whitewashed DNA: Inclusivity Gaps and the Complicated Story of DNA Testing

As ancestry DNA tests like MyTrueAncestry or 23andMe gain in popularity, the gaps in their data and findings become increasingly more apparent for the people who have been missing from the research for decades. While a DNA test can be a fun way for someone of European descent to find out just where their European ancestors hailed from, people of color end up with confusing, conflicting, and unreliable results.

As much as 80% of the genetic samples these sites compare your DNA to is exclusively European. This lack of diverse data combined with a lack of medical research and a lack of community outreach creates a pervasive problem that genetic researchers are only just now starting to acknowledge, let alone address.

Lack of Diverse Sample Pools

One of the biggest problems with DNA testing sites is the lack of diverse DNA samples. For customers with a European background, the site can compare your DNA results to a database with hundreds of thousands of entries. For customers with a non-European background, that database might only be in the double digits. In some cases, including MyTrueAncestry, there are zero samples from outside Europe (as of this publication).

Without sufficient sample pools, drawing reliable conclusions is all but impossible.

In one case, a Polynesian man named Mondoy was told that about 11% of Polynesian DNA had some Scandinavian background. However, when digging further, he found that this conclusion was based on the fact that the 18 Polynesian DNA samples available to the site happened to share a single Scandinavian ancestor.

Errors like this are more likely to happen when the sample size is too small. Because of this, you could send your DNA to five different sites and end up with five different results.

To compound this problem, there’s a serious miscommunication about what your DNA results mean:

DNA Ancestry Is Not Heritage

DNA doesn’t pass down as neatly as we like to think. You could be one of 10 siblings all born to the same two parents, and all 10 might receive different DNA ancestry reports. They would be mostly similar, but you might find it weird that your sister is 3% Southeast Asian while you’re 7%.

This is because DNA is not just a clean 50/50 mix of the two biological parents. You’ll inherit little bits of DNA from each parent that will add up to roughly (but not quite) a 50/50 mix, but the particular little bits of DNA that make up your genetic mix will be slightly different than each of your 9 siblings.

The further back you go on the family tree, the higher the probability of coming across an ancestor from whom you received zero DNA. Does that make your great-great-great grandpa any less your great-great-great grandpa? Of course not. Does it make your sibling who did get a genetic match to that ancestor more related to your great-great-great grandpa than you are? Of course not.

What it does mean is that your Ancestry report will be missing that individual, even though the person is very much a direct and biological ancestor? While people who already know a lot about their family tree might be able to fill in the gaps to a certain extent, this isn’t really possible for those who were cut off from their ancestry.

For people of color, this means your genetic report could be less than accurate and you might lack the resources or supplementary records to fill in the missing data.

Lack of Medical Research

In addition to ancestry, DNA tests are often advertised as providing important insights into your health. Because genetics can put you at higher risk of certain conditions, knowing which ones are a higher risk for you can help you make more personalized and informed decisions about your diet, lifestyle, and overall health.

That is, unless you’re a person of color, in which case the health report you receive is all but useless. Most of these risk scores are based on risk factors that are accurate in European genetics but less so in African Americans and other ethnicities. This inaccuracy is due to the fact that people of color are not included in research.

In other words, the genetic markers that might suggest a person of European descent is at a higher-than-normal risk of breast cancer are not the same as the genetic markers that would suggest a person of African descent is at a higher risk of breast cancer. The results, then, might indicate that you don’t have a high risk when you actually do (or vice versa).

This problem goes beyond the scope of what these ancestry sites can fix, though. It’s really a problem in the medical community more broadly. With over 90% of medical research done on populations of exclusively European descent (and exclusively male), it’s hard to know how accurate these genetic health reports are for anyone who isn’t white and male.

Solving this would require the entire medical community to start making a concerted effort to include more diverse subjects in their studies and then to disaggregate their findings by racial and ethnic background.

As the landscape currently looks, people of color are regularly excluded by the simple fact that researchers don’t actively reach out to communities of color. Even in cases where they do so, they may not always do a great job of establishing trust—which brings us to the third problem:

Lack of Community Outreach

The relationship between the black community and the American medical system is not a happy one. During the period of slavery, enslaved African Americans were forced to become research subjects in cruel and inhuman experiments that amounted to little more than blatant torture with no scientific value.

After slavery, the black community continued to be targeted for scientific experiments, like the Tuskegee study, that would never have been approved for white subjects. Even today, our healthcare system continues to provide substandard care to its black patients.

With 400 years of abuse and mistrust, it’s understandable that African American customers would be skeptical about handing their genetic data over to a private company—especially if the ancestry and health reports they get in return aren’t reliable.

For many DNA testing sites, there’s a lack of recognition that trust needs to be built. Few companies have done anything to address concerns about privacy, lack of transparency, or who will have access to that genetic data once customers hand it over.

How People of Color Can Research Their Ancestry

Given the many issues with most DNA testing sites, is there any way for people of color to research their ancestry? Here are a few alternatives and approaches you might try instead:

Use AfricanAncestry

AfricanAncestry was founded for the precise purpose of filling that gap in DNA testing for black communities. It offers the largest pool of African DNA of any company to date and has one of the strongest privacy and data security policies available.

Your data is kept anonymous throughout the testing process and then promptly destroyed as soon as your report is complete. Your information is never sold to or shared with any third parties and never provided to law enforcement.

For people of African descent, this is hands-down the best place to get reliable DNA results. It does not provide any health information, only ancestry results. But, as mentioned earlier, that’s because the medical research is missing.

Ask About Sample Sizes for Your Ethnic Background

While sites like 23andMe and Ancestry have become a little more transparent about the limited data pools for non-European customers, it’s still hard to find out just how many samples any given site has for your ethnic background.

Before you fork over your money, reach out to customer service to find out. Call up a few different sites to ask and then go with the one that has the largest sample size for your background.

Do Multiple Tests

If no company has a good sample pool for your ethnic background, do multiple tests and compare the reports. While no single report will be completely accurate, a comparison might help you narrow down the commonalities and fill in some gaps.

Skip the Test, Go Straight for the Archives

You don’t have to be a professional archivist or trained researcher to dig into public records for evidence of your family tree. While the records will be filled with gaps for descendants of enslaved people, you can still find some insights into your family history through these public records.

For people with a more recent immigrant background, public records might even be more reliable than a DNA test.

If you’re at a loss for how to start researching public records, reach out to your local library. The New York Public Library, for example, provides regular genealogy research classes free to the public.

During the pandemic, all classes are online so even if you’re not in the city, you can still participate. However, your own library might also have similar workshops or classes. If not, the librarians working there can probably provide some guidance to help you get started.

Further Reading

Here are some additional articles, books, and resources to learn more about the racial gaps in DNA testing and how people of color can learn more about their genealogy:

Genetics Has Learned a Ton – Mostly About White People. That’s a Problem by Brian Resnick

Read this article for a more in-depth discussion of how the lack of diversity in medical research impacts the reliability of that research and puts communities of color at risk.

The Need to Build Trust: A Perspective on Disparities in Genetic Testing by Kalyn Saulsberry and Sharon F. Terry

This research was published in Genetic Testing and Molecular Biomarkers and describes the importance of including more diverse participants in medical research and how medical professionals can rebuild trust with communities of color.

The Cooking Gene by Michael Twitty

For a firsthand account of the challenges of genetic testing and genealogical research as a black person in America, Michael Twitty’s book is one of the best you’ll find. Twitty also offers a low-cost workshop for people of African ancestry who want to research their genealogy.

New York Public Library’s Free Guide to Genealogy Research

For those who can’t attend a class, the library has put together a detailed guide to help you start researching your ancestry through public records. While the guide is based on the New York Public Library’s resources, the basic information on how to find public records and start searching through them for your ancestors still applies, regardless of where you’re based.

Journey into Your Past: African American Genealogy Resources

This list of historical records and resources was compiled by Ahmed Johnson, a reference librarian at the Library of Congress. It’s a great jumping-off point for descendants of enslaved African Americans.

Ethnic Heritage Links

The National Archives maintains this list of resources for Americans of various ethnic backgrounds including Asian, Hispanic, and Native American. There are tons of links and resources to help you start your genealogical research, no matter what your background is.