[Infowarrior] - Google's Brin investing in Parkinson's research

[Richard Forno]

Sergey Brin starts study after finding he has Parkinson's mutation

http://www.theaustralian.news.com.au/story/0,25197,25175520-2703,00.html

Mark Henderson | March 12, 2009
Article from:  Times Online

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 program 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 £290 ($620)  
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 just  
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.

Mr Brin will announce the study Thursday 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.

"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 said 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  
dollars $US4 million from testing 10,000 people. Google has invested  
dollars $US3.9 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.