reprinted from Issue 17, Fall 2013 of Frontiers of Medicine (PDF)
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TThe key to saving lives in hereditary cancer is that when you identify someone with it, you have to get the message out to the rest of the family,” says Jonathan Terdiman, MD, a gastroenterologist who founded the Hereditary Gastro-intestinal Cancer Prevention Program. He works with genetic counselors to diagnose and educate families at increased risk of developing colon cancer and other types of cancer.
One of the most common causes of familial gastroin-testinal cancer is associated with a condition called Lynch syndrome. Thomas Weisel, an investment banker who has financed technology companies for decades, made a generous donation to help Terdiman and his colleagues launch KinTalk (kintalk.org). This web-based tool allows families to ask UCSF faculty and staff questions about Lynch syndrome, and to share information with each other.
The site also enables people to share family trees, genetic testing results and other valuable information within their extended families – a bit like Facebook, but using a secure network that is accessible only to invited family members. “Instead of missed voicemails and shuffling all this paper, we now have a single area of high-quality, easily accessible data for a family to look at,” says Terdiman.
Drawing on his high-tech background, Weisel advised on how to offer more than just a genetic counseling site to leverage the power of social media. “Although medicine is often notoriously bad at using technology to address problems, this is clearly a great application of technology,” says Weisel. “What’s really neat is that it can be applied to a lot 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.”
Indeed, Terdiman has presented the KinTalk model to interested colleagues across UCSF, and has already been approached by other medical institutions that may be interested in licensing the technology.
“There are no research grants or clinical funds to create this kind of patient resource, so philanthropy is essential,” says Terdiman. “As an investment banker in the tech industry, Mr. Weisel under-stood the power of this tool, and we are incredibly grateful for his generosity.”
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