So now you have your genetic test results and the recommendation is to share them with your family members; sometimes easier said than done. Family dynamics and communications can often present challenges. It is not uncommon that we hear from patients that they do not communicate or speak to certain members of their family. We decided to put together some helpful hints to help you navigate this dilemma.
When Your Results Are Negative
If your genetic test result is negative, there is less of an urgency to share with family members. Sharing negative results with family can provide information about how to go about testing; the process, the genetic counseling, the lab that was used, etc. This can be educational for other family members. It is altruistic to share this good news.
When Your Results Are Positive
If on the other hand you tested positive for a genetic variant associated with an increased risk for a genetic condition, you have a responsibility to share this information with children, siblings, parents and even, in the best of circumstances, with aunts, uncles and cousins. Many genetic counseling groups, including Genome Medical, provide a family letter to help facilitate this sharing of positive results. Still, you may feel uncomfortable about reaching out to those in your family who you may be out of touch with, or even estranged from.
If you are the first person in the family to test positive for the genetic variant, you may feel some sense of guilt or responsibility. Remember, having a genetic variant is a random act and not something that you can cause or prevent. Genetics, while seemingly individual, can become a family affair.
How does one handle sharing the news?
One suggestion is to use a family member you do feel comfortable with to help facilitate the sharing. I have heard from patients that, “my one aunt is in touch with everyone, so I reached out to her to spread the word”. Perhaps this relative can share the family letter or send an email. Speaking of email, this is a wonderful way to reach a lot of people at the same time. You could send an email with a brief statement saying that you tested positive for a genetic variant associated with a specific condition and attach the family letter. Be sure to include the specific results too.
Genetic information is complex and can be hard to explain, but remember you don’t have to know all the answers to the questions that your relatives may ask. There are experts who can answer these questions; your responsibility is just to share your genetic testing result.
Even if you have a close-knit family with good communication, sharing a positive genetic test result can feel uncomfortable, intimidating or scary. So, in either circumstance, whether you have a distant relationship with family members or if you are in good standing, and the idea of family communication makes you anxious or you need to process what to do or say, your genetic counselor is the perfect person to help with this. We are here for you.
Written by Mary-Frances Garber, MS, CGC
Genome Medical Licensed Genetic Counselor
