If you read only one article about why 23 and me matters to Parkinson’s, read this one

Sergey Brin’s Search for a Parkinson’s Cure
By Thomas Goetz
June 22, 2010 | Wired Magazine July 2010

The full article is here:

http://www.wired.com/magazine/2010/0...ys_search/all/

… in 2006, his wife-to-be, Anne Wojcicki, started the personal genetics company 23andMe (Google is an investor). As an alpha tester, Brin had the chance to get an early look at his genome... And there it was: He had the mutation. His mother’s 23andMe readout showed that she had it, too…

.... he spent several months mulling over the results. He began to consult experts, starting with scientists at the Michael J. Fox Foundation and at the Parkinson’s Institute, which is not far from Google’s headquarters…

….His frustration is well founded. For decades, Parkinson’s research has been a poor cousin to the study of Alzheimer’s, which affects 10 times as many Americans and is therefore much more in the public eye. What is known about Parkinson’s has tended to emerge from observing patients in clinical practice, rather than from any sustained research…

…And indeed, Brin has given money to both these areas of research, predominantly through gifts to the Parkinson’s Institute and to the Michael J. Fox Foundation, which is committed to what’s called translational research—getting therapies from researchers to the clinic as quickly as possible. Last February the Fox Foundation launched an international consortium of scientists working on LRRK2, with a mandate for collaboration, openness, and speed.
“The goal is to get people to change their behavior and share information much more quickly and openly,” says Todd Sherer, head of the Fox Foundation’s research team. “We need to change the thinking.”

As Brin’s understanding of Parkinson’s grew, though, and as he talked with Wojcicki about research models, he realized that there was an even bolder experiment in the offing…

…Brin’s tolerance for “noisy data” is especially telling, since medical science tends to consider it poisonous. Biomedical researchers often limit their experiments to narrow questions that can be rigorously measured. …And by design it means the data almost never turn up insights beyond what the study set out to examine.

…starting to wonder if that model could be inverted. Why not start with tons of data, a deluge of information, and then wade in, searching for patterns and correlations?...

HERE ARE TWO TIMELINES:

Here are two timelines—one from an esteemed traditional research project run by the NIH, the other from the 23andMe Parkinson’s Genetics Initiative. They reached almost the same conclusion about a possible association between Gaucher’s disease and Parkinson’s disease, but the 23andMe project took a fraction of the time.—Rachel Swaby

Traditional Model

• 1. Hypothesis: An early study suggests that patients with Gaucher’s disease (caused by a mutation to the GBA gene) might be at increased risk of Parkinson’s.
• 2. Studies: Researchers conduct further studies, with varying statistical significance.
• 3. Data aggregation: Sixteen centers pool information on more than 5,500 Parkinson’s patients.
• 4. Analysis: A statistician crunches the numbers.
• 5. Writing: A paper is drafted and approved by 64 authors.
• 6. Submission: The paper is submitted to The New England Journal of Medicine. Peer review ensues.
• 7. Acceptance: NEJM accepts the paper.
• 8. Publication: The paper notes that people with Parkinson’s are 5.4 times more likely to carry the GBA mutation.

• Total time elapsed: 6 years

Parkinson’s Genetics initiative

• 1. Tool Construction: Survey designers build the questionnaire that patients will use to report symptoms.
• 2. Recruitment: The community is announced, with a goal of recruiting 10,000 subjects with Parkinson’s.
• 3. Data aggregation: Community members get their DNA analyzed. They also fill out surveys.
• 4. Analysis: Reacting to the NEJM paper, 23andMe researchers run a database query based on 3,200 subjects. The results are returned in 20 minutes.
• 5. Presentation: The results are reported at a Royal Society of Medicine meeting in London: People with GBA are 5 times more likely to have Parkinson’s, which is squarely in line with the NEJM paper. The finding will possibly be published at a later date.

• Total time elapsed: 8 months

THIS IS WHAT THE PARKINSON EMPIRE STANDS TO LOSE.
The idea that research that takes 6 years could be done in 8 months

Did you just hear a dog whistle?

Bob, I can already tell you the outcome of this case, which will be 5 or 10 years from now. There will be a $1 billion settlement. Each customer will be entitled for a check of about $10. The lawyers will be awarded $500,000,000 in fees and expense recovery. 23andMe will declare bankruptcy. The trustee will sell its database, their only asset, for around $100,000,000. After three more years, they will close the bankruptcy trust account, which now has about 70,000,000 left after more fees to the bankruptcy lawyers. Customers will now get their pro-rata share, or about $1 each.
Just another day in American tort litigation....

Who is the dog whistleing?

Vicky

The dog hears what we cannot hear;
the eagle sees what we cannot see
the wolf circles around me
an hour before sunrise.
It is the Hour of the Wolf
the hour when the guard falls asleep
the hour when the most people are born
the hour when the most people die
can you hear the wolves singing
"We were born to howl"
If you should wander in the forest
at night
where every path deceives
is that something coming up behind you?
through the shadows of your worst fears
Under the white moon rising
something moving, something growls;
we hail from an ancient dream
we heed a different call
we sing the song of things unseen
we sing for no reason at all
under the white moon rising
something stirring
something on the prowl
can you hear the wolves singing
"We were born to howl."

-probably Jeremiah, but nobody is claiming it