It's Complicated: Sharing Your Genetic Test Results

I feel funny writing about sharing genetic test results with family when I’ve never done it myself, but don’t let that stop you from reading… I’ll draw upon my years in the clinic as a genetic counselor,  speaking to many families about this topic, and offer thoughts from my side of the table. I have seen that it’s complicated for some families, but it can be done.

Let’s take a step back. 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.

How exactly can genetic test results be tricky when it comes to sharing them? Well, they can change your relationships with your family members. Some people love information, and some loathe it. Some relatives may welcome the details, while others might wonder why you even considered genetic testing in the first place. Sharing your test results is when you find out who’s in which camp, and this is where things can get messy. The good news is that the challenges you face might be temporary – sometimes, people just need time to adjust to the new information you’re telling them. They might come back a little later, ready to hear what you have to say. And for some families, going through the experience of discussing test results has a positive effect: it bonds them closer even than they were before anyone had testing.

So what can you do? When it comes to sharing your test results, discuss some ideas with your doctor or genetic counselor. You might also consider techniques that Theresa Smith offered in her post here. And you could try a few of these as well:

  • 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. You can find examples in the Patient Guides here, on the “Test Results and Recommendations” page.
  • 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. You could also point them to this website as a source of information.
  • 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

Hopefully some of these tips will help you with sharing your results. One of the biggest things to remind yourself is why you’re sharing them. As Theresa said, it allows you to, “…be proactive instead of reactive about our own health, and the health of the ones we love the most.” Not everyone will understand why you’re sharing your test results with them. They might come around with time. And for those who do understand, you could make a very meaningful difference to them.

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The information, including but not limited to, text, graphics, images and other material contained on this blog are for informational purposes only. The purpose of this blog is to promote broad understanding and knowledge of various health topics. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read on this blog. Ambry Genetics Corporation does not recommend or endorse any specific tests, physicians, products, procedures, opinions or other information that may be mentioned on this blog. Reliance on any information appearing on this blog is solely at your own risk.