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Sergey Brin, the co-founder of Google, is to spend millions of dollars on an innovative genetic study of Parkinson’s disease after learning that he has a mutation that confers a high risk of the incurable brain condition, The Times has learnt.
The programme will invite 10,000 Parkinson’s patients to have their DNA analysed for a token fee to investigate inherited and environmental factors that contribute to the disease and to advance research into new treatments.
Genetic data from the patients will be compared with information from healthy customers of 23andMe, a company that charges $399 (£290) for DNA scans that assess people’s chances of developing 105 diseases, from breast cancer to baldness.
The donation by Mr Brin, 35, who is married to Anne Wojcicki, the co-founder of 23andMe, means that the Parkinson’s patients will pay only $25 (£18) for the company’s service.
The goal is to identify DNA variations that are more common among people who have Parkinson’s than among healthy controls, which could be linked to its development. Both Parkinson’s patients and 23andMe’s customers will be asked to fill in detailed lifestyle questionnaires, which could reveal how environmental triggers interact with genes to cause the disease.
Mr Brin’s mother has the disease, and when he took 23andMe’s test last year he learnt that he has inherited a mutation of a gene called LRRK2, which raises his risk of developing the condition to between 20 and 80 per cent.
Ms Wojcicki gave birth to the couple’s first child, a son, in December, and though they have had him tested for the LRRK2 mutation, they do not yet know the results. “We are highly motivated about this disease because of Sergey, but also potentially because of our child,” Ms Wojcicki told The Times yesterday.
Mr Brin will announce the study today in a speech to the US Parkinson’s Institute in Santa Fe, California.
“We can make significant progress in understanding Parkinson’s disease if individuals join together and contribute their personal experiences to scientific research,” Mr Brin said yesterday.
“Individually, our genes and experiences are lost in a sea of statistical noise. But, taken together they become a high-power lens on our inner workings.”
The project is the first to use data from customers who have paid to have their genomes read in research into the genetic origins of a particular disease, opening a valuable new resource for medical genetics.
Ms Wojcicki said that the model would be particularly powerful because it combined genetic and environmental data, and might thus tease out how these work together in Parkinson’s. Any discoveries will be published and made freely available to other researchers.
The small fee charged to the Parkinson’s patients, however, will be controversial because it is not usual for people to pay to participate in medical research.
Ms Wojcicki told The Times that the rationale was to recruit patients who were fully committed to the research and who would be more likely to take part in follow-up investigations that were a key element of it.
“We want to screen individuals who take an interest, so having some sort of barrier where they pay a nominal amount should weed out the individuals who just pick it up because it’s free,” she said. “We want to make sure it’s a community of individuals who are really vested.
“Basic discoveries can definitely lead to new treatments, and we hope any information we find gets used for new therapies. Secondly, if there is a genetic component to Parkinson’s, nothing is more profitable to individuals than helping out their children.”
Mr Brin’s donation will underwrite most of the cost of testing the Parkinson’s patients, and the comparison with the same data from the healthy controls.
Though 23andMe would not disclose its value, it would normally make $4 million from testing 10,000 people. Google has invested $3.9 million in 23andMe.
The Parkinson’s patients will be invited through the Parkinson’s Institute and the Michael J. Fox Foundation, a research charity founded by the actor, who has the disease.
British patients can participate only if registered with one of these charities, though 23andMe plans to start collaborations with European Parkinson’s groups.
Peter Donnelly, director of the Wellcome Trust Centre for Human Genetics at the University of Oxford, said that the study offered an interesting opportunity, but that its value would depend on the details of its design.
“You would worry that recruiting patients who pay, and controls who have paid for genotyping, might introduce selection biases,” he said. “The interaction of genes and the environment is a key question, but you also have to be careful with questionnaire data because we know people suffer from recall bias.”
Katie Hood, chief executive of the Michael J. Fox Foundation, said that the initiative held the potential to accelerate discoveries that enhanced our understanding of Parkinson’s disease.
William Langston, chief executive of the Parkinson’s Institute, said that patients would benefit from the opportunity to know more about their personal genetic background.
Telltale signs
— Parkinson’s disease is diagnosed in about 10,000 people each year in Britain
— On average the first symptoms appear after the age of 50
— The symptoms can be classified as either motor or non-motor
— The first type is exemplified by tremors in a hand (this is the first symptom in 70 per cent of cases), slowness of movement or stiffness. The second is exemplified by sleep disturbances, constipation and depression
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