“No” Can Mean “Not Now”: How To Keep Talking About Genetic Testing

Anxiety about test results. A person may be nervous to get bad news or news that requires them to make more choices. A change in their support system can make decisions less overwhelming. Even just time to digest the information could change their mind.

Cost. Testing might be unaffordable for someone. Improved income or health insurance can make it possible. In certain situations, financial help is available. Learning about this help can put testing within reach.

Time or emotional availability. Sometimes, a person has so much going on that they have no room for testing. A year or two later, or even five years later, life could be less busy. Testing may feel more manageable after a job promotion or a child’s graduation.

Concerns about privacy and data storage. Some people are wary that once their genetic data is tested, it may be accessible to others. But the world culture of privacy and data storage is always changing. As it changes, a relative’s attitude about personal information may change, too.

Concerns about insurance discrimination. Someone could be worried that they will be denied life insurance if they test positive for a disease-causing variant. After they successfully purchase insurance, they may be ready to get tested.

Feeling that testing isn’t relevant. A younger person may not think that genetic testing is relevant to them. As time goes by, they may notice signs of aging that could be confused with symptoms of illness. Knowing their disease risk may help them interpret what’s going on in their body.

Logistical problems. Even if a family member wants to get tested, practical barriers may prevent them. They may not have access to needed technology. They may have difficulty making or traveling to appointments. Changes in circumstances may open these roadblocks.

Space out the conversations. You don’t have to make every get-together a discussion about disease. Consider bringing up the topic about once a year. However, you know your family best. If talking about genetics causes tension, let the subject rest for longer. If a relative’s first “No” was casual and you see a good opening, the time might feel right sooner.

Bring up the topic organically. Some families talk to each other about life milestones and personal news. In those discussions, you might learn that a relative’s circumstances have changed. Use the conversation to remind them about genetic testing. Congratulate your cousin on a new job—then mention that their health benefits may cover the test.

If you don’t know a family member’s situation, start by bringing up a related personal story or news item. Talk about your recent mammogram. Ask if they saw an article about an innovative cholesterol screening method.

Point out that testing is useful to medical care. As Theoryn conducted her interviews, she noticed a pattern. This was an informal observation, but it revealed a meaningful part of some people’s experience. One group of interviewees thought that their test results would be interesting or would generally inform their lifestyle choices. These people, who had previously considered testing, tended not to follow through with the test. Other people understood that their results could affect their medical treatment in a concrete way. These were more likely to eventually get tested.

Tell your relative that genetic test results are not just health facts. The information is actionable. They can show the report to their health care team. Their doctor can change their screening schedule or prescribe preventative measures. You could even describe how testing made an impact on your life. For example, say that when you tested positive, your insurance covered extra screenings.

You could also remind your family member that results are not just useful to one person’s medical care. They can be useful to children and siblings, too. Even if your relative isn’t interested in their own results, they may want to know genetic information that is important to other loved ones.

Give just a nudge. Talking about genetic testing doesn’t have to be a big presentation every time. If you’ve already explained your family’s disease risk, you don’t need to repeat all the details. You only need to ask, “Have you given more thought to genetic screening?” If the answer is “No,” you can leave it at that. You’ve heard enough to know that they still have reasons for not getting tested. Just asking the question is enough for the moment.