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Kintalk, “an educational and family communication site for individuals and their families with hereditary cancer conditions,” is one example of the way technology is making it easier for families to talk about genetics. Funded in part by Silicon Valley businessman Thomas Weisel and run by a board of directors including Dr. Jonathan Terdiman, Kintalk helps families confidentially share information about hereditary cancers and keep up with screening opportunities. There’s also a forum where visitors can share information and support.
Then there’s IHaveLynchSyndrome.org, an educational and awareness organization created by Georgia Hurst, who has tested positive for Lynch Syndrome herself. That diagnosis—along with the death of her brother from cancer—has put Hurst on a mission to connect patients and healthcare professionals—especially genetic counselors. Using tweet chats, blog posts, podcasts, and more, Hurst’s organization gives sufferers and their families access to all the information they need to make informed decisions about their care.
The big question when it comes to this sort of thing is how much (if anything) you tell your family. On the one hand, your genetic information could very well save their lives; on the other hand, you might be scaring them unnecessarily.
In Hurst’s case, she decided to let her family know—with mixed results. A cousin got tested and came out negative. Other family members refused to get tested and, Hurst says, were angry that Hurst was “trying to scare them.”
It’s particularly tough if you want to let your children know. “Whether to tell children and when and how to tell them is one of the most common reasons people seek support in the process of genetic testing,” says Karen Hurley, a clinical psychologist who specializes in hereditary cancer risk.
This is particularly true when it comes to breast cancer. Do you let your daughter know about her potential risk even she hasn’t reached puberty yet? Dr. Jill Stoller, a pediatrician who carries a BRCA mutation (which means she’s more likely to develop breast cancer) decided to tell her daughter Jenna. When Jenna was 18, she chose to get tested. “She told me that the stress of not knowing was worse than knowing,” Stoller said.
On the other hand, Massachusetts special ed teacher Ann Little decided not to tell her 13-year-old daughter when Ann learned she had the BRCA gene—though she did tell her older children. “It would be a huge, dark cloud hanging over her,” Little said about her decision.
It’s a tough choice to make—deciding whether or not to tell your family about a genetic predisposition for cancer. Definitely a downer. At the same time, though, by sharing information—particularly through an online option like Kintalk or IHaveLynchSyndrome.org—you give your family a fighting chance at early diagnosis and treatment. In this case, ignorance definitely isn’t bliss.