Why Sergey Brin May Have Disclosed His Risk for Parkinson’s

By Miguel Helft

The Google co-founder Sergey Brin on Thursday disclosed that he carried a mutation of a gene known as LRRK2 that gave him a higher-than-average risk of contracting Parkinson’s disease.

When I called medical experts and financial analysts for comment, the first question I got was: “Why would he disclose that?” They pointed out that since Mr. Brin was disease-free, might never get the disease, and even if he did get it, could probably function at a high level for many years, there was no need to inform shareholders or anyone else.

Mr. Brin declined to be interviewed. But my colleague Allen Salkin had some insights into one of Mr. Brin’s possible motives. Allen chatted with Mr. Brin at a New York party on Sept. 9 to promote 23andMe, the DNA-testing company of which Mr. Brin’s wife, Anne Wojcicki, is a co-founder. During their conversation, Mr. Brin said it could be useful to have one’s DNA code open to the public, where it could follow a sort of open-source model. If his data was public, he said, doctors — or anyone who was interested — could look at his results and make suggestions about how he should handle them, offering treatment suggestions if it showed he might be susceptible to a disease.

“I figure if I put it out there, people would look at it and I’d learn something I need to know sooner than if I hadn’t put it out there,” Mr. Brin told Allen. He also said he would soon start to blog about his DNA.

As of now, if Mr. Brin has received any advice, it is not widely known. The comments section of his blog remains empty.

Comments are no longer being accepted.

G Stauffer September 19, 2008 · 8:29 pm

Advice?

When I saw the mention of his disclosure, I figured it was just a way to publicize 23andme. For a zillionaire, who cares what you tell people – it won’t really impact your wealth in any significant way. For the average person, telling people publicly facts about yourself that suggest a health risk is a sure fire way to limit your economic future either by discouraging potential employers from hiring you or by leading insurers to charge you more for medical or life insurance. It really is never a good thing to publicly disclose medial records of any sort. Aside from being a bit of an odd thing to do in my book, it will never help you in any way and could well hurt you financially.

Patricia September 19, 2008 · 9:15 pm

“I figure if I put it out there, people would look at it and I’d learn something”

You might learn how much evil is out there in this cold, cruel world. That’s why you’ll never convince me to make my source code public.

AA September 19, 2008 · 9:49 pm

Interesting thought, I would assume it would have to be anonymous. I agree with Stauffer, it would be a privacy nightmare if this information was personally identifiable and open to the public. If it was private – I wouldn’t mind contributing my results if it meant helping myself and others.

Ryan L September 19, 2008 · 9:56 pm

I don’t think Sergey did this to make money, I think he did it to get information about using his DNA to get information about preventing something bad from happening.

This is a great idea. As a scientist I would certainly like to see this idea become more widespread.

Good luck, Sergey!

sketchy… September 19, 2008 · 10:54 pm

SB’s wife co-founds a company that provides ‘cool’ information of zero practical value. Some wealthy folks dabble in reading their DNA despite the fact that scientists in 2008 consider this as medically insightful as astrology. The company -and others like it – soon come under under notable technical and regulatory scrutiny.
Suddenly SB decides to disclose this nugget of non-information to the press…
Wow – its almost like this guy knows how to use the media and cyberspace to popularize a concept that he likes!

Regine September 19, 2008 · 11:08 pm

Has Brin contributed any of his zilliions to Parkinson’s research?

Ajay September 19, 2008 · 11:18 pm

I dont think that Mr Brin needs to lie after the 15 billion he already has.By putting public attention on his disease, and funding it,he is hoping maybe he or succeeding generations escape it.My aunt died of this disease and it is just painful to watch brilliant people (she was a teacher) lose even basic things one day at a time. Imagine, Mr Brin who thought of brilliant scientific Phd papers (his work is still a classic) losing all the memory of whatever he has done (including building Google).Have a Heart . Even rich guys get sick.
Mr Brin, hang on there.
//www.decisionstats.com

Jeff September 19, 2008 · 11:19 pm

There is more to Parkinson’s than a career or financial viability. When one has to choose between life and stock options, the choice is obvious. So little is know about the disease that any gesture to increase awareness and/or open up new research avenues is a blessing.

Since Mr. Brin doesn’t have to worry about things like health insurance or getting a job, he has the liberty to become an advocate. It’s a rare opportunity that few of us will ever see: having the stature and visibility to spot light a disease that kills and debilitates too many people.

Watching someone deteriorate from it over time is like watching death in slow motion. Any effort to stop or reverse it deserves serious consideration.

Tracey jones September 19, 2008 · 11:32 pm

His DNA is a blessing in disguise. Now maybe he’ll shift some of his and Google’s money away from “climate change” and actually help people save their lives through medical research funding.

Jay Asafi September 19, 2008 · 11:52 pm

Come on, it’s obvious why he did it. It’s a marketing ploy for his wife’s company. Look at all the free exposure he got for her company.

Cee C.Rider September 19, 2008 · 11:55 pm

Parkinson’s disease is so unique to each person diagnosed
that I know of a few Neurologists that describe this illness
as Parkinson’s syndrome.
In any event I am a carepartner of a spouse who has been diagnosed 10 years now,and cannot stress enough the
benefits of lots of varied exercise to stabilize this illness.
Modern Neurologists that we consult believe exercise to
be neuro-protective and not just in rat studies.

David Ray September 19, 2008 · 11:57 pm

ABout as relevant as a VP’s ability to kick a soccer ball.
David/Tucson

ava September 19, 2008 · 11:59 pm

my bf has PD and this is death in slo mo

Michael Dillon September 20, 2008 · 12:00 am

Or, knowing that the sequenced human genome will inevitably lead to vastly increased pre-natal DNA testing for predisposition to things from disease to eye color, he’s making an ethical point in addition to aiding research scientists. I mean, what would you do if you found out your unborn child has a predisposition to Parkinson’s?

Eben Spinoza September 20, 2008 · 12:07 am

Unlike open source software, our geneotypes were not designed. They are spaghetti code, adaptations to random environmental changes, shaped by natural selection.

Until phenotypic and genotypes are collected and matched on a very large scale, the information provided by 23andMe will most likely be useless for most individuals.

Warren September 20, 2008 · 12:07 am

Regine,

Yes, Mr. Brin’s mother has Parkinson’s, and she is being treated at the University of Maryland, to which Mr. Brin has donated money.

Bob North Smithfield, RI September 20, 2008 · 12:11 am

Everyday the world is a better place because of Google.
Thank you Mr. Brin for co-inventing Google.
And may you escape the ravages of that awful disease.

Anon September 20, 2008 · 12:15 am

I am disappointed by the inappropriately light tone of much of the news coverage I have seen on this.

This is very serious news. The fact that this bad genetic fortune has fallen on someone who has been very fortunate in other areas of his life does not make it any less sad. The fact that it provides a bit of free publicity for 23andme also does not make it any less sad.

Sergey will be a fantastic advocate for Parkinson’s research, which should be applauded, but instead I have seen people suggest that it is self-centered. I can’t help but contrast this with the reaction to Michael J. Fox’s support of Parkinson’s research. Why such a difference? Do people just feel a closer connection to actors?

Eben Spinoza September 20, 2008 · 12:16 am

One other thing: by Mr Brin’s logic, he should also “open source” all of his medical records (i.e., his phenotypic information) so that they can be correlated to the genotypic information he has shared.

Dave Newton September 20, 2008 · 12:31 am

And so, here we are, buzzing about the Web Era’s version of the commercial publicity stunt. You could say, we’re going viral. Which is also a disease process.

Friday September 20, 2008 · 12:36 am

He’s promoting his wife’s company. She’s just as ambitious as he is, but with none of the success.

He’s a hypocrite–gee, how magnanimous of him to make such a public gesture when the consequences to him of self-disclosure are meaningless.

Scott Safier September 20, 2008 · 12:42 am

I’m adopted. I have no knowledge of my biological parents ailments or conditions. As an adoptee who is blind to his biological heritage, should I undertake a genetic screening, I could certainly benefit from the advice of others who have lived with a knowledge of a similar genetic heritage. I hope I could learn from people who understand from our common predisposition, whether it be a predisposition to Parkinson’s or heart disease or schizophrenia. The genetic unknown can be terrifying. I appreciate Mr Brin’s disclosure and hope that people can learn from it and not casually dismiss it because of the messenger’s wealth or status.

erik September 20, 2008 · 12:46 am

Its new to me but I think hes showing the world a leap of faith for future online medical practice and research. Or on the other hand he’s just showing the world what genius DNA looks like.

Peter September 20, 2008 · 12:49 am

“Climate change” affects us all: the effects might not be quite as immediate and as tangible, but once they’re upon us, it’ll be much too late to do anything about it. If you’d read the original article from earlier today discussing Brin’s announcement, you’d know that his mother has Parkinson’s and he’s already endowed a chair at Johns Hopkins for the study of it and other movement diseases.

joyce September 20, 2008 · 12:54 am

I did not read the original announcement of Mr. Brin’s DNA tests results, or statistics of probability he will development Parkinson’s Disease. Since he decided to divulge his results, he should partner with a research arm to know which earliest symptoms may predict later PD symptoms. The Michael J. Fox Foundation is supporting and developing innovative research into early diagnostic tests and treatments. Mr. Brin should fund some of this research which may benefit himself and millions of people who suffer with PD.