As a previvor and researcher who studies communication about genetic risk information, one thing we don’t talk nearly enough about is the responsibility for sharing genetic test results with family members.

In the U.S., this responsibility usually falls on the proband (the first person who undergoes genetic testing in the family). But every family is different.

What if you’re still trying to process the result yourself? What if you’re estranged from the person who needs to know? What if someone else in the family is closer to the person you need to share with?

“Tell your family” sounds straightforward. But, in practice, it can be anything but.

When someone learns they have an inherited mutation in a cancer gene, that information is important for relatives. Because inherited mutations can be passed through families, a positive genetic test result may prompt relatives to consider testing of their own.

Yet, one of the things I’ve learned through my lived experience and research is that communication about genetic risk information cannot be a one-time conversation but an ongoing process.  

People may need time to process the information. They may not understand what a positive genetic test result means. Relatives may react positively, be unsure or not show interest, and even react negatively and push back. In other words, relationships can be impacted by these difficult conversations.

In other words, follow up communication is so important. For example, I have a younger brother who has still not undergone genetic testing. He’s known about my mother’s and my inherited mutation for over a decade now. So, every couple of months, I bring up genetic testing to see if he has any questions or if he wants to talk about it.

While you may be hesitant to continue to talk about genetic test results with your relatives, like I feel with my brother, if he is ever diagnosed with cancer someday, I don’t want to feel like I should have talked to him more.

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