Sharing Your Genetic Information Could Save a Life

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No one likes to be the bearer of bad news, but if you have a genetic disease like Lynch Syndrome or other kinds of cancer, you can save the lives of your family members by letting them know and encouraging them to get tested. There are a variety of resources to help you do this, including sites like Kintalk.org and IHaveLynchSyndrome.org.

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. 

Kintalk Gets Families Talking About Cancer

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Cancer can be a scary disease—and what’s worse, it can be really isolating for the people suffering from it and their families.

Enter Kintalk.

Kintalk, founded by the University of California San Francisco’s Department of Medicine, is more than just a resource for people with cancer: it’s a place where they can gather support and information about the genetic aspects of the disease, as well as getting up-to-date medical research and advice from doctors whose work focuses on cancer treatments. The site also offers information about screening and a secure location to store medical information so that families can connect and get a good understanding of genetic issues that could lead to cancer.

The biggest win for Kintalk, though, is that it offers a secure, easily accessible place where families can upload their genetic information and share it with each other. That means a better chance of earlier cancer detection where there’s a genetic predisposition.

Kintalk wouldn’t exist without generous donations like the one from Thom Weisel, a Silicon Valley businessman with a background in tech. Back in 2013, Weisel met with Kintalk Board Director and gastroenterologist Jonathan Terdiman, MD, about Terdiman’s vision for a centralized, online location for families to share genetic information that could help patients detect cancer earlier and more efficiently. Weisel was on board immediately.

“Although medicine is often notoriously bad at using technology to address problems,” Weisel observed, “this is clearly a great application of technology. What’s really neat is that it can be applied to lots of other areas. Whether it’s a certain type of cancer or some other medical issue, it puts an affinity group—members who share the same issues—in a secure environment, and allows them to talk to each other.”

The medical experts behind Kintalk include genetic counselors, gastroenterologists, oncologists, surgeons, and nurses, all of whom specialize in hereditary cancer syndromes.

Kintalk focuses on two main areas of cancer: hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (a genetic condition that often leads to colorectal or ovarian cancer). About 5-10% of breast cancer and 15% of ovarian cancers are believed to be hereditary, while about one in 370 people have Lynch syndrome. That’s why it’s so important for families with a history of these genetic mutations to communicate with each other and get tested early to nip cancer in the bud before it becomes potentially life threatening.

Kintalk allows families keep in touch with each other—and with others dealing with these issues—and get all the information and support they need to stay as healthy as possible.

The best part about all of this is that the tech behind Kintalk could easily be used to provide support and education around other medical scenarios as well, like Weisel suggested. By connecting fellow sufferers with professional support, Kintalk and any offshoot programs will keep people healthier and more in the know about their options.