We don’t talk nearly enough about WHO is responsible for sharing genetic test results with family members.
While one person may undergo genetic testing, this information affects the entire family.
How we communicate that information matters.
This responsibility usually falls on the proband (the person who undergoes genetic testing first). 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?
Primary burden: Patients are generally expected to pass on health and risk details to at-risk relatives.
Healthcare provider assistance: Doctors and genetic counsellors frequently supply family communication letters or record copies to make sharing easier.
Even at the best of times, family dynamics can be tricky (and not just around the holidays!). Now throw in the decision to have genetic testing, receiving powerful results, and having the responsibility of relaying those results to your family members. You guessed it – it can get complicated. The issues that can come up when sharing genetic test results have the potential to throw off any family. And with good reason: genetic test results are intensely personal. These results can change everything, as you probably already know.
Some suggestions I came across…
- Call or meet face-to-face: If you have a close relationship with a family member, this might be a good option
- Send a letter or email, consider social media: If you’re not as close with a family member, this could work. Your doctor or genetic counselor might even have examples to use, or be able to help you write this. Social media can be an effective way to consider contacting relatives, particularly if you use direct messages (instead of public posts).
- Give them what they need: Your exact test result, with the gene and any mutation(s) found, is what relatives need if they want to do their own testing.
- Be supportive, but not pushy: Your relative may be hearing this information for the first time, which can be challenging
- Give them space: Time may help them digest the details
- Offer to be available and share resources: They might need your help to answer questions, or just to listen.
- Don’t expect them to do what you did: Even though they may support your decision to have testing, they may not want it themselves – and this is ok, because everyone is different
Lynch Syndrome Ireland 