Black History Month: Family Health, Hidden in DNA

Color photograph of four adults, smiling at the camera

The Whitney family — parents Joyce and Harvey Sr. at each end; daughters Wanda and Donna, left to right. 

This is a guest post by Wanda Whitney, head of the History & Genealogy Section. Candice Buchanan, a reference librarian in the section, contributed.

Working in the History and Genealogy Section of the Library, we routinely hear stories of surprising revelations that lie in the often-tangled roots of family histories, especially now with the growing popularity of DNA testing. I had already experienced this firsthand when I decided to take a DNA test. Still, I was shocked at the news it revealed about me and my family.

It wasn’t some unknown relative popping up in a previous century, a sibling I didn’t know I had, or that I was adopted, although those types of discoveries happen all the time. Instead, it was something that had health implications for me, my parents and my children — a genetic mutation for a hereditary type of anemia.

I thought, “What does this mean for me? For my parents and siblings, cousins, our children?”

This type of medical revelation is important to all families, but particularly for Black ones, as so many of our histories are lost and buried through slavery and its long, ugly legacy. Medical histories can be even more difficult to tease out, and this lack of knowledge can contribute to gaps affecting health outcomes for Black families. Since many times we know less about our backgrounds than other Americans, it’s a good thing to explore during Black History Month. It can be life-changing to talk to our parents, grandparents, aunts, uncles, and cousins about our health history, too.

I already knew about the sickle cell anemia trait that several of my relatives, including my mother, carried. But I was floored to see DNA test results that indicated I carried a genetic mutation linked to G6PD deficiency. This is a condition that affects the health of red blood cells and can lead to anemia when one is exposed to certain medications, foods or infections. G6PD deficiency is quite common among people of African descent. Since this gene is located on the X chromosome, and females have two, I am not at high risk for developing symptoms because my second X chromosome doesn’t have the mutation. Men only have one X chromosome, so if they inherit the mutation from their mother, they are most at risk.

I read all I could about the mutation and what it might mean for my family and had several conversations with my doctors. I do not have G6PD deficiency, but I could have passed the genetic mutation to my children. I told them about the possibility and they ultimately decided that, since the condition does not cause serious symptoms for many people, they would not get tested.

I also told my parents. My father was fascinated. He has always loved delving into family history; learning about our health was just an extension of this. My mother was much more reluctant, but they went ahead with testing. The results showed that that I had inherited the mutation from her. We also were left with the knowledge that she carries two different mutations — one linked to sickle cell anemia and the other to G6PD deficiency.

Explaining the results to her did not go well. In the end, my father and I talked about what the mutation is and what it may mean for us. But my mother and I haven’t discussed it again. Communicating unexpected results when researching family histories can be tricky.

There is not a single catch-all solution to handling unexpected discoveries in the course of genealogical research. Every situation is unique and often deeply personal. One way to prevent unpleasant results is to keep in mind that anything is possible.

In the end, family history is human history. We must enter it with open hearts and minds. We must do our part to complete exhaustive research, weigh the evidence, analyze the results, and present the facts in as well rounded, honest and contextual a manner as possible. Privacy and ethical considerations determine what we share, as well as how and whom to share it. For guidance, support, and consideration, subject specialists at the Library have created resource guides and presentations on these topics.

You can also use Ask a Librarian to submit questions and discuss your research.

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2 Comments

  1. Diedre Johnson
    April 11, 2022 at 6:11 pm

    Was hoping to find Wanda Whitney for a quick comment on genetic genealogy. She was the editor for this definition on the Library of Congress site.

    //guides.loc.gov/genetic-genealogy This is for a piece I am writing on a Netflix documentary. I am a contractor there.

    Unfortunately, my deadline is noon PST tomorrow, 4/12/2022. I can be reached at the above email. For further information on me, if needed, it can be found here https://www.linkedin.com/in/diedrejohnson/ Thank you for your time.

    • Neely Tucker
      April 12, 2022 at 11:50 am

      Hi Diedre,

      I’ve relayed your note and hope they’re able to get back to you in time for your deadline!

      Best,
      Neely

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