I’m 28 and I Don’t Know My Family History—Here’s How That Affects My Health

If there’s one thing I’ve learned over the years as a health and wellness writer, it’s that information is power. The flip side of that is the fact that not having key information available to you can be deeply disempowering. Like millions of other Americans, I’m adopted, which means I haven’t been able to find out a lot about important health information that most people have readily available to them: family health history and genetic health information.

Family health history is essentially just that: knowing the health histories of members of your biological family. This kind of information can help doctors pinpoint whether you are at risk for certain health conditions that can run in families or be determined by genetics. “Family history is a strong clue for chronic disease risks you may face, such as heart disease, stroke, cancer, and diabetes,” says Latha Palaniappan, MD, the scientific director of Genomics and Pharmacogenomics in Primary Care at Stanford Medicine. The Centers for Disease Control and Prevention (CDC) CDC recommends documenting as much as you can about your family’s health history in order to share with your doctor, and ask for additional testing if you’re concerned about your risk for a specific disease.

While I’ve always valued a healthy lifestyle—I try to eat well, sleep enough, exercise, and manage stress as much as possible—I’ve wondered recently if my inclination towards healthy living has been driven in part by fear, specifically the fear of what I don’t know about my health and genetics. Since I don’t know what could be in my genes, at least I do have some control over my lifestyle now, and that counts for a lot, right?

Thankfully, Dr. Palaniappan assures me that family history is not the end-all, be-all of what will happen with your health. “Family history is probabilistic, not predictive,” she says. (Basically, it can educate you about your odds of experiencing a certain health outcome, but not predict it outright.) But if you do have access to that information, use it, since “family history provides important clues about your health risks,” says Dr. Palaniappan.

So if you don’t have access to this information, should you be worried? And what else can you do, besides actually going out to try to find your biological relatives’ information (which is a hugely personal choice, and not possible for some)? There are some other things you can do to help you gather more information about your health and feel more empowered about your future.

How DNA testing can help you find answers

Honestly, I didn’t think about my family health history too much until I started approaching 30. As the mystery surrounding family health information came up a bit more for me, I talked to my mom and my sister about my concerns surrounding what we don’t know. When my mom got me a 23andMe DNA test (which start at $199 for the Health + Ancestry test) for Christmas one year, I was excited—and kind of anxious—to have the chance to take a deeper look into my health information.

23andMe is just one example of a direct-to-consumer (DTC) DNA test that can give you some more information about your health. According to the company’s website, the health reports available with the test include genetic information that can clue you in to your genetic risk for conditions like type 2 diabetes, select variants of BRCA1/BRCA2 (the gene associated with breast, ovarian, and pancreatic cancer), celiac disease, uterine fibroids, and more. The brand’s test can tell you about your carrier status (meaning if you carry genes linked to an inherited disease that could affect your children) for some diseases like cystic fibrosis and sickle cell anemia.

However, these DTC tests don’t often come with specific consultation to walk you through what’s present in your genome and how that translates into actual risk. That’s why it’s important to work with a genetics expert or genetic counselor if you can, says Robert C. Green MD, a medical geneticist who leads the Preventative Genomics Clinic at the Harvard-affiliated Brigham and Women’s Hospital, and is the director of the Genomes2People Research Program. “You [can] have a geneticist or genetic counselor who basically talks to you about what [the test results] mean and what should you do about it. What should you worry about and what should you not worry about,” says Dr. Green. For example, if you tested positive for the gene for a certain hereditary cancer, a genetic counselor can help you with the next steps, like if you should seek more testing or work with a specialist.

Dr. Green adds that DTC tests aren’t the most comprehensive testing option. That’s because most of them use what’s called chip-based DNA technology, which essentially scan your genome for known common mutations or markers along your genome, he says. “[This technology] can be very good for ancestry for [finding relatives] and for certain specific markers, such as the Ashkenazi Jewish BRCA1 mutation that 23andMe looks for. It does not look at every letter in your genes, and it’s not typically set up to find rare or novel mutations that can affect your health.” (They’re not always super accurate, either—a 2019 study found that these chips have a very high false-positive rate for rare genetic mutations.) “For health reasons sequencing—which looks at every letter in a segment of your genome or across the whole genome—is more expensive, but much, much more comprehensive,” he says.

What other options are out there?

DNA testing is definitely not cheap (it can run anywhere from $200 up to $2,000 for the more in-depth testing, and isn’t always covered by insurance) and it’s certainly not the only way to find out more information about your health.

If you don’t know much about your family health history, Dr. Palaniappan encourages paying attention to key health markers including blood pressure, cholesterol, glucose, and heart rate, and getting those checked regularly. “These measurable risk factors can be effectively treated to reduce your risk of heart disease, stroke and diabetes,” says Dr. Palaniappan. “Everyone can reduce the risk of disease by eating a healthy diet, getting enough exercise, and not smoking. Cancer screening tests such as mammograms and colorectal cancer screening can detect precancer and treatable cancers early,” she says.

While getting the DNA test felt like a great first step to knowing more about my health, it’s also good to know that the everyday things that I sometimes don’t even think about (like walking my dog) might have a bigger impact on my health than I thought before.”What you do each and every day–what you eat, how much you exercise, and your other health behaviors, can ultimately affect your risk of developing disease,” says Dr. Palaniappan. If anything, I’ve learned that not knowing your family health history doesn’t have to be a huge blank spot, but if I ever do want to know more, there are options—which is empowering for sure.

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