The question was addressed by Brian Shirts, MD, PhD, President of ConnectMyVariant and Service Medical Director of the Molecular Genetics Laboratories at Vanderbilt University Medical Center. If you have a question you would like addressed, email ICARE@vumc.org for consideration in future newsletters.
Q: Why do you think cascade testing has not happened as much as we would like, and how do you think we can do better?
A: Talking to relatives about a genetic variant that may change their lives is hard! From a health care provider perspective, we should not be surprised when it does not happen as much as we would like. This is not the type of thing that comes easily for most people. Working with hundreds of people through ConnectMyVariant, I have seen a few things that make family communication about hereditary cancer genetics easier. 1) Find your team. Find people who you can work with and encourage each other. Successful families often have more than one person working together. It might be a sister, aunt, cousin, or spouse who works with you to contact relatives. It could be a volunteer Family Outreach Navigator at ConnectMyVariant that you can go to for ideas and positive feedback. 2) Don’t give up. Sometimes relatives are not ready to get genetic testing. That is OK. Give them more than one opportunity to hear the information and understand the benefits of testing. Don’t nag but let them know that you still care. 3) Seek a bigger community to see how it makes a difference. People who have the same variant have a 90% chance of having a common ancestor. When people connect with others and start working together to explore distant family connections, miracles can happen. People may find a whole group of others to work with. They share stories and encourage each other. I have seen groups build huge family trees over a few years and help hundreds of others get genetic testing and cancer prevention. Understanding genetics beyond their immediate family helps people see that, even if their brother refuses to get testing, they can be part of a bigger cause that makes a difference for many others.
Discover Your Genetic Connections with ConnectMyVariant
A powerful resource designed to help those with inherited cancer risk connect with family, share genetic information, and build supportive communities. By signing up, you’ll help advance research and support others on similar journeys. Check it out at https://connectmyvariant.org/signup-form/icare