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built up a database of 4,000 Parkinson’s patients and family members. 23andMe has been actively engaged with the Parkinson’s community, partly because of Brin’s family history with the disease, which has led them to build up what Hood calls “an incredible resource.” Now that his Institute is studying Parkinson’s by doing getting complete genome sequences on entire families, Hood said he’s arranged for a meeting with Wojcicki to talk about how the two groups might work together.
“Here is a large population of patients,” Hood says. “I don’t know of any clinician that has 4,000 Parkinson’s patients that are ready, available, and enthusiastic about participating in research.”
While many geneticists are “horrified” about how they think 23andMe is misleading consumers about the value of the data, Hood disagrees. “It’s a gold mine for people like us,” Hood says. 23andMe is “a fascinating social network that is providing the opening salvo in educating the general public about genomics and what it means. I think they’ve done a great public service.”
Many people are still unsure about why they would want to get genetic testing, and aren’t clear on what it’s good for, Wojcicki said in her talk. The market itself is still small and highly “price-sensitive,” meaning that most people were unwilling to pay the high prices that 23andMe charged previously.
It isn’t as though 23andMe can market its test as a silver bullet to predict people’s risk of everything from cancer to Alzheimer’s to Parkinson’s. The evidence tends to come out in a case by case basis. The company has generated some interest among scientists by pointing out that about one-fourth of the members of its database have an abnormality in a gene known as ApoE 4, which is thought to be linked to increased risk of developing Alzheimer’s disease. One scientist I spoke to after Wojcicki’s talk at the conference said he’d personally buy the test at $99 just to check his own ApoE 4 status.
I’m sure plenty of scientists out there are still scoffing about how people are getting all kinds of kooky ideas about their genetics, and otherwise misinterpreting all this data. The FDA, and certain members of Congress, have shown interest in doing more to regulate the consumer genetics industry. Scientific skepticism, regulatory interference, fairly widespread consumer indifference all seem like pretty significant risks to 23andMe and its competitors.
But if genome sequencing costs continue to plummet, and 23andMe is able to continue to bring down the cost of its test and beef up its database, it’s clearly going to be harder for scientists to ignore.
Future genomic studies won’t depend as much on enrolling thousands of patients in a randomized clinical trial, Hood says. Rather, they could depend on allowing individual patients to serve as their own control. “Personalized medicine changes the rules. I think we’ll be able to do really interesting studies in the future with an N of 1 and learn really interesting things about how a drug works,” Hood says. In that case, the key will be in recruiting lots of individuals interested in participating in a way that they can see how they might personally benefit.
“If you think about a new way of conducting research, we are suddenly able to bring people in to participate in an incredibly fast fashion,” Wojcicki said. “It drives me crazy to see how long it takes people to enroll in clinical studies. But if I ask people to raise their hand, and see if they want to participate, it’s amazing how many will come forward.”
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