Can social networks help with medical research? The world’s first genetics-based social network – as 23andMe labels itself – is looking to show they can. The company has already collected more than 125,000 DNA samples from customers, and is now specifically reaching out to those with Parkinson’s, in an effort to find new genes linked to the disease.
It started in 2009, when 23andMe decided to do genetic research and invited anyone diagnosed with Parkinson’s to donate their DNA sample. The company recruited people using social media, and at Parkinson’s research conferences. Participants were asked for a DNA sample, and sent online surveys about their diagnosis, symptoms and lifestyle habits. They were rewarded with 23andMe’s personalized genetics services for free (as reported by NPR).
Around 1 million people in the U.S. currently have Parkinson’s disease. But less than 10% of them have the genes that have been “discovered” so far as related to Parkinson’s. Past Parkinson’s research has examined families with many members who had the disease, with a focus on finding specific genes that may dramatically increase one’s risk of getting Parkinson’s.
Researchers believe there may be many genes involved in Parkinson’s; but their effects are too small to be apparent in smaller study groups (hundreds or several thousand of participants). Emily Drabant, research director at 23andMe, says “We know that there are many genes, so the idea is when you aggregate across many thousands of people you can start to see genes that have perhaps a small effect on risk for Parkinson’s. Perhaps, you have three or four risk variants and the combination increases your risk for Parkinson’s quite significantly.”
23andMe is hoping that by using online crowd sourcing methods, the company will “revolutionize” genetic research around Parkinson’s. According to the 23andMe site focused on Parkinson’s research efforts, “Over 6,500 people with Parkinson’s have come together to form what is now the largest Parkinson’s community for genetic research in the world.” The goal is to reach 10,000 participants, a much broader pool for genetic research.
“They may in theory be able to involve 10,000 people with Parkinson’s disease, and do it cheaply and easily,” Hank Greely, a Stanford Law School professor who follows genetics companies, told NPR.
While 23andMe’s efforts will open up a much broader study base, can their customers be trusted to report their diagnosis and symptoms accurately? According to NPR, many question whether delivering genetic information directly to the consumer is even ethical – especially depending on the accuracy of the genetic risks that information may reveal.
Robert Green of Harvard Medical School told NPR: “You know social media has changed the rest of our lives – there’s no reason why social media and the Internet can’t revolutionize some aspects of medical research as well. I see this as part of a larger trend, not something that’s really restricted to genetic testing companies.”
What do you think – can a social media-based approach to genetics research really work? Given the scale, it could certainly lead to faster discoveries. But can we trust the accuracy of results based on self-reported data?