Mail-in DNA tests can reveal more than ancestry or inherited traits. Sometimes, they identify previously unknown relatives – and a possible link to important family health information.
But reaching out to someone you’ve just discovered through a genetic screening can be sensitive. Before you ask health-related questions, it’s important to understand how to approach the conversation, what these tests can and can’t tell you, and when to reach out to a genetic counselor or other healthcare professional.
What can I learn from a direct-to-consumer DNA test?
Various types of direct-to-consumer genetic testing services may provide different types of results.
Depending on the testing platform, you may find:
- Where your ancestors came from.
- Unknown relatives.
- Whether you’re more likely to have certain traits, such as if you’re more likely to have dimples or to like the taste of cilantro.
- Whether you have specific genetic changes tied to a small number of medical conditions.
It’s important to understand that the health information provided by these tests is not the same as the information provided by a full clinical genetic screening and evaluation with a healthcare professional.
The test results may be inaccurate or incomplete or find certain changes in a gene while overlooking others.
Key considerations before taking an at-home DNA test
Before taking a test, understand that the results can affect not just you, but other people in your family.
You may find things you don’t expect or didn’t want to know. For example, these tests can sometimes reveal unknown half-siblings, that a parent may not be biologically related to you, or that parents are more closely related than previously known.
How to ask newfound biological relatives about family health
Many testing platforms allow users to choose whether they want relative matching. So, if a relative is listed, there’s a good chance that person may be open to being contacted and, possibly, to sharing family medical history.
Use caution
Even if the person opts in to contact, they may be caught unawares. Be prepared for any number of reactions. They may not want contact or may want a closer relationship than you expected.
Start with general, tentative questions
Ask if the person is open to connecting: “I’ve just learned this, and it’s new information to me. Were you aware of it? Would you like to talk about it?”
Proceed with health questions if the person is open
Even as genetic testing technology advances, family and medical history remain central in clinical genetics and healthcare.
If the person is open to connecting, ask about health history. Many major medical issues won’t show up in consumer DNA tests, so some questions you might ask include:
- Are there any known genetic conditions?
- Is there a family history of cancer?
- Is there a history of heart attacks or early or unexpected cardiac death?
- Is there a history of seizure disorders?
- Is there a history of learning differences?
- Is there a history of any chronic condition, like diabetes?
Generally, information about parents and grandparents is most relevant, because it will be more reliable than older health information that may have been unrecorded or misdiagnosed.
If there is a history of any condition, ask for the age at diagnosis. Conditions that happen earlier than expected can raise a red flag for an inherited risk. When possible, also ask about age at death and treatment details.
Answers to these questions can help a healthcare provider decide whether more targeted genetic testing is appropriate.
Limitations of direct-to-consumer DNA tests
If a test shows genetic risk factors for a certain condition, it doesn’t necessarily mean you’ll develop that condition.
Likewise, a genetic test that rules out certain risks doesn’t guarantee that you’ll never develop a related condition. Many medical conditions can also be caused by non-genetic factors.
Further, testing can provide information about what’s currently known and tested for, but we don’t currently know all of the genes that can lead to health problems.
When to visit a genetic counselor
If you receive concerning findings from a direct-to-consumer DNA test, they should be confirmed. Talk to your primary doctor and ask for a referral to a genetic counselor.
The counselor can help you decide whether additional genetic testing makes sense and target tests based on your concerns, personal health history and family health history.
If a genetic change is found, the counselor may also recommend testing family members to help determine their risk.
How family health history changes preventive care
Certain findings can lead to changes in screening recommendations, prevention tactics or treatments to reduce risks.
For example, if you discover a hereditary risk for breast cancer or colon cancer, you may want to consider early mammography or colonoscopy. If you find increased risk for high cholesterol and heart disease, you may want to closely monitor cholesterol levels and start treatment if they start to rise.
Some findings also may be important when considering future children, including conditions more common in certain ancestry groups.
Understanding DNA data privacy in direct-to-consumer genetic tests
Before getting a direct-to-consumer DNA test, always read the fine print. Companies may use your genetic data for research or may sell it.
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