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Jack Sisson's TBI Blog

A hug is duct tape for the soul.

From Smart Planet:
Google co-founder Sergey Brin has about a 50 percent chance of developing Parkinson’s disease, the degenerative central nervous system disorder that impairs motor skills and speech.

The revelation comes through a touching profile by Thomas Goetz in Wired magazine, which shows how Brin has tried to “move the needle” of research for the disorder by contributing $50 million and talking to, well, everyone.

According to the article, Brin discovered that he carried a mutation of a gene called LRRK2, which sits on the 12th chromosome. The mutation increases the chance that the disease will emerge sometime in the 36-year-old’s life, “between 30 and 75 percent.”

The risk for the average American is one percent.

But Brin is not the average American, and he’s used his clout as co-founder of one of the biggest tech companies in the world to, well, do good. (Google’s motto: “Don’t be evil.”)

Helped by his own stature, as well as that of his wife, Anne Wojcicki, who founded genetics company 23andMe, he was able to nail down a definitive connection between his mother’s experience with the disease and his predisposition toward it.

With a $4 million donation, Brin has funded 23andMe’s online Parkinson’s Disease Genetics Initiative, which involves 10,000 people already diagnosed with the disease who are willing to offer personal information in the collective hope for progress toward a cure. The Initiative was established in conjunction with The Parkinson's Institute and Clinical Center and The Michael J. Fox Foundation.

In so many words, the aim is to create a massive database for the greater good. Currently, 23andMe’s database has genetic information from 50,000 individuals. Increasing that can only help the results become more reliable.
Read more.

Jack became interested in having his remaining family's DNA tested, as well as his own, when he discovered (almost simultaneously) that he himself has Parkinson's and that 23 and Me offers DNA testing (currently $199 plus $5/month) as well as a searchable genetic database. According to 23 and Me:
With a simple saliva sample we'll help you gain insight into your traits, from baldness to muscle performance. Discover risk factors for 95 diseases. Know your predicted response to drugs, from blood thinners to coffee. And uncover your ancestral origins.
Perhaps not surprisingly, the Centers for Disease Control (CDC) has taken a cautious approach to the recent increase in public access to genetic testing:

Despite the many scientific advances in genetics, researchers have only identified a small fraction of the genetic component of most diseases. Therefore, genetic tests for many diseases are developed on the basis of limited scientific information and may not yet provide valid or useful results to individuals who are tested. However, many genetic tests are being marketed prematurely to the public through the Internet, TV, and other media. This may lead to the misuse of these tests and the potential for physical or psychological harms to the public. At the same time, valid and useful tests, such as those for hereditary breast and ovarian cancer or for Lynch syndrome, a form of hereditary colorectal cancer, are not widely used, in part because of limited research on how to get useful tests implemented into practice across U.S. communities. Individuals can learn more about specific genetic tests by visiting the Web sites listed below or by talking with their doctor.

Find out more at CDC's site.

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