March 2025
Issue #41

Takeaways from RootsTech 2025

On March 6–8, 2025, ConnectMyVariant hosted a booth at RootsTech, the world’s largest family history conference. Volunteer coordinator Betty Parkins and a staff of volunteers introduced ConnectMyVariant to professional and amateur genealogists, who were impressed and surprised by the power of genealogy to prevent disease.

Many conference attendees asked questions to learn more. ConnectMyVariant members may have the same questions, so we’ve addressed common concerns here.

Volunteer coordinator Betty Parkins at RootsTech on March 6, 2025.

Does ConnectMyVariant work only with cancer and heart disease patients?

ConnectMyVariant’s method for cascade testing has been shown to be effective in many situations when an inherited gene variant is known to increase disease risk and only one copy of the variant is enough to cause that risk elevation. It is also important that prevention for the disease is possible, so once you know you have a pathogenic variant you can take positive action. Many hereditary cancer genes and some heart disease genes fit this profile. When a gene associated with another disease meets these conditions, ConnectMyVariant will consider adding it to our database. Anyone can fill out the online sign-up form whether or not their risk-associated gene is already in the database. If it is not, we’ll review it on a case-by-case basis.

Does ConnectMyVariant do genetic tests?

ConnectMyVariant does not provide genetic testing. We use information from medical tests ordered by doctors and other health professionals to help you identify people in your family with high risk for disease. Your relatives can then talk to their doctors or genetic counselors about genetic testing. Family outreach navigators can help you find genetic counselors and screening services in your area.

Can ConnectMyVariant use information from direct-to-consumer genetic tests?

DNA results from direct-to-consumer genetic testing companies such as AncestryDNA, MyHeritage and 23andMe don't provide enough information to support all of ConnectMyVariant's work. The tests are usually not medically validated. If you suspect you have a pathogenic variant for any reason, including the results of a direct-to-consumer genetic test, we recommend that you follow up with your doctor to discuss whether further genetic screening could be the next step. Results from that medical screening will have the details you need to sign up for ConnectMyVariant. However, some direct-to-consumer tests identify potential family connections that can be helpful for ConnectMyVariant members. You can use these matches to find distant relatives who may be at risk for disease.

Does ConnectMyVariant harvest data from members for research?

ConnectMyVariant shares only limited data—your first name and the contact information you choose (email or phone number)—with other families who report having the same variant as you. A full privacy statement is available on our website. We do allow members to indicate if they want to participate in medical research. Those research projects have separate privacy statements that volunteers have the opportunity to review.

Do you have a question about ConnectMyVariant, too? RootsTech is over until next year, but we are always available to hear your concerns. Talk to your family outreach navigator, who can answer questions with your personal needs in mind. Or reach out to our email address, info@connectmyvariant.org, where you can start a conversation at any time.

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