18 March 2009
Genetic testing company 23andMe has announced plans to collect DNA samples from 10,000 people with Parkinson’s disease as the basis for a new genome-wide association research project to identify genetic variants associated with increased risk of developing the disease, disease progression, or with individual responses to current Parkinson’s medication. The project will be carried out in conjunction with two non-profit US research groups, the Parkinson’s Institute and the Michael J. Fox Foundation, and only patients registered with these groups will be able to participate, although the project could be extended to non-US Parkinson’s charities. DNA and lifestyle data will be compared with control information from normal paying customers of 23andMe who choose to participate.
Participants will receive a kit to take and submit saliva samples for DNA extraction, and to complete an Internet-based survey with information about their disease and treatment history, along with lifestyle information that could be relevant in identification of environmental factors involved in the disease. They will receive information about their own genetic variants in the same way that paying customers would, as well as information on any discoveries arising from the project, becoming part of what the company is styling the 23andMe Parkinson’s Community. 23andMe founderAnn Wojcicki said: “We’re very frustrated with the pace of research discoveries and we felt one way to accelerate it would be to empower individuals and form communities and self-create a research cohort...We also believe we are really democratizing research in a new way” (see Bloomberg news report).
Google co-founder Sergey Brin, who is married to Ann Wojcicki, is providing financial backing for the project; he reportedly has variant of the LRRK2 gene previously associated with an increased risk of developing the disorder, which also affects his mother, and the couple have a child who has reportedly been tested for the LRRK2 gene variant. Ms Wojcicki commented: “We are highly motivated about this disease because of Sergey, but also potentially because of our child” (see Times news report). The financial subsidy means that Parkinson’s patients who choose to participate in the project will be charged US$25 for the full genotyping service, which normally costs US$399.
Experts have expressed some reservations about the value of the project, depending on how well it is designed and carried out; there are concerns that the recruitment process for both patients and controls could be subject to particular bias. The (admittedly small) fee required for participation is also controversial. The company says that the use of the internet “significantly increases the efficiency and reduces the cost of recruiting participants and conducting research” (see press release), although participation in this sort of medical research project is usually free.