Genetic counselor Megan Myers says that “positive genetictest results can be lifesaving information for family members. Making your relatives aware that there is a genetic mutation in the family provides them the opportunity to see if they too carry the genetic mutation and to take steps to reduce their risk.” Myers acknowledges, however, that this news is not always easy to share—both because of various family dynamics and because genetic information is complex. She advises considering the following steps when sharing information with family.
1. Gather the Information
- Genetic-testing results (this is the most important piece of information)
- Family tree
- Screening recommendations
- Family letter explaining the situation and what it means for your family members
- A clinical note, written by your genetics professional, explaining the results and the next steps for you and your family
- Options for communicating genetictesting results and associated information (listed above) include mail, e-mail, phone, and Kintalk.org (see sidebar “Kintalk: Conversation Starter”).
- You may need to do some sleuthing to find family members you have not been in touch with recently. Asking other family members or using social media are good first steps.
3. Reach Out to Resources
- Genetic information is complex and can be hard to explain. It is important to remember that you do not need to have all the answers—there are experts who can provide information to answer your relatives’ questions. Here are some good, credible resources:
Though the process of notifying family about genetic-testing results can be difficult, Myers reminds patients that taking the initiative to reach out is critical. “Some people don’t share their genetic information because they don’t want to be the bearer of bad news,” she says. “But while talking about cancer risk is never a comfortable conversation, sharing this information may help relatives prevent or detect cancer at an early and treatable stage—it just might be a lifesaving conversation.”
A social networking site gets people talking about hereditary cancer risk.
Patients diagnosed with hereditary cancer syndromes often face a difficult challenge: sharing news of the complex diagnosis with family members. And yet it is a critical conversation because knowledge of the potential for the hereditary condition can lead to screening and early detection, which saves lives.
In 2012 the UCSF Hereditary Gastrointestinal Cancer Program launched a social network tool, called Kintalk, to help families share this critical information. Kintalk is a web-based tool that allows patients to share cancer risk information directly with their relatives via a secure website. Patients can send family members a link to the site via e-mail; family members then log in and find comprehensive resources about Lynch syndrome and genetic counseling. The process takes some of the burden off the patient, who no longer has to explain the complicated diagnosis. “It can be tough enough to give a family member bad news about being at risk for genetic predisposition to cancer,” Megan Myers says, “but then to have to explain complex genetic information can be overwhelming and even paralyzing for a person.”
With the help of Kintalk, patients feel more comfortable and confident in securely sharing their genetic information with family members, and family members are able to understand the information and their next steps in terms of genetic testing and screening.
- Ovarian Cancer Advocate Profile: Carla Jimenez
- Newly Diagnosed with Ovarian Cancer? Start Here; Krishnansu Tewari MD, University of California
- What You Need to Know about Ovarian Cancer Risk, Detection, and Prevention: Stacey Akers MD, Roswell Park Cancer Institute
- Committed to Community A Survivors Personal & Public Journey
- Ovarian Cancer and Genetic Risk; Megan Myers, University of California Genetic Counseling
- Personal Perspective: A Cancer Survivor Shares Her Story of Genetic Testing
- Sharing the News- Tips For Communicating Genetic Information to Family Members
- Q&A: The Next Step: Thriving through Survivorship: Ritu Salani MD, The Ohio State James Cancer Center