
Sergey Brin’s Search for a Parkinson’s Cure  - thafman
http://www.wired.com/magazine/2010/06/ff_sergeys_search/all/1
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fgimenez
I'm a computer scientist working in a Parkinson's lab that is very closely
tied to the names in the article. My main duty is data analysis simply because
there is so much information to process. If you want some more information
regarding state of the art treatments, our website is
<http://neurosurgery.ucsf.edu/bankiewicz> .

I also maintain our website, so if you see anything that needs fixing, drop me
a line :)

~~~
rosejn
I'm interested in learning more about bio-tech research, genetics and
synthetic biology. I hope to finish my doctorate in CS soon, and after that
I'm going to take some time off to travel and read. Any advice for a computer
geek who wants to learn how to program biology for the good of mankind? What
do you, or others who work in the industry, think would be the best way for me
to bootstrap myself in the area?

~~~
fgimenez
My lab brought me on because they realized that they needed to use computers
more effectively with the amount of data they generated. I came in with little
bio knowledge, but they did a good job of filling me in very quickly.

I'd suggest getting involved in any lab doing any form of computer work. Lab
meetings are a great place to find out what problems people are having, and
most of the time you'll be able to use your skills to solve them. After taking
on a few projects, people will start to realize what you can and can't do, and
they'll start to give you a lot of related work.

Good luck!

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jessriedel
If Sergey Brin thinks the current medical research establishment stifles
certain kinds of research avenues, fine. But let's not cast this as him
"proposing to bypass centuries of scientific epistemology in favor of a more
Googley kind of science". He's not the next Francis Bacon, and this isn't some
deep insight into the nature of science.

~~~
loboman
Why not? Can you explain?

~~~
kingkilr
Because he's not suggesting an experiment. This method involves taking data
already obtained and doing analyses on it, to look for something, it's really
a different way to form a hypothesis. After he finds something this way it'll
go "back" to the standard rigors of the scientific method.

~~~
loboman
"it's really a different way to form a hypothesis"

Isn't that enough?

~~~
makmanalp
By different, he doesn't mean revolutionary.

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pavs
The world would be a better place if more young billionaires would have
incurable diseases.

On a serious note, I hope they can find a cure for him and millions of others
who can do nothing about their illness other than playing a waiting game.

~~~
orangecat
_The world would be a better place if more young billionaires would have
incurable diseases._

They do. Aging may not technically be a disease, but it's currently
unavoidable and cripples your body and often your mind. If I had a few extra
billion dollars lying around, that's what I'd focus on.

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MikeCapone
I'm surprised that he didn't invest more than 0.3% of his net worth (if it
really is $15B) into this. It's his choice, but I think that if I was in his
position, I'd spend more than that (but yeah, I guess that's easier to say
when it's not you).

Maybe there are bottlenecks that make it so more money wouldn't speed things
up, but I bet there are ways to use resources to help alleviate or remove
these bottlenecks.

~~~
rada
Why would it have to be a percentage of his net worth? He's contributed $50MM
which he feels is enough to "move the needle". Medical research moves slowly
and simply throwing money at it may not offer any incremental benefit.

Edit: I thought I'd add an example, since my father has Parkinson's so I know
a little bit about it. One promising area of research is stem cell therapy.
However, one known side effect of stem cell injection is cancer. (It takes
years to develop but there have been enough studies already to show a strong
correlation). Now, Parkinson's doesn't kill per se - it makes life miserable
towards the end, but as a rule, people with Parkinson's live just as long as
people without. So let's say you had really high net worth and wanted to spend
it all to cure Parkinson's. Would you be able to "buy" people to trade a low
chance of improvement in their lifestyle for a very real chance of cancer? I
don't think so. Of course, this is just one example, however, it shows that
things are not that simple.

~~~
MikeCapone
I'm just saying what _I_ would do if I was worth 15 billion and knew that I
had a high chance of having a serious disease like that.

Throwing money blindly at a problem doesn't always help, that's very true. But
I'm sure there are many intelligent ways to use more than 50m effectively.

You mention stem cell therapies; helping get them to the point where they
don't cause cancer anymore might be an area of research worth pushing,
especially if some of it is under-funded. Giving out scholarships to people
studying in areas related to the disease might be a way to help improve the
supply of researchers. And when you can't hire more people, you can usually
upgrade the equipment with faster/better stuff (shortening the upgrade cycle
might help accelerate progress). You could help pay for conferences where the
leading minds working on the problem can meet and exchange information (and if
there's already enough of those, you can help make them better). You can
probably find high-risk/high-reward research projects that aren't getting
funded through the regular channels because those usually favor low-risk/low-
reward projects. Etc.

But I repeat: What Brin did is _awesome_. Kudos to him. All I'm saying is
maybe I'd do it differently if I was in his shoes.

~~~
ErrantX
Surely the most logical thing to is invest the $50M now to get things started
and wait to see what needed funding next..

This almost certainly will not represent the sum total of his donations.

~~~
MikeCapone
Good point. We'll have to wait and see.

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rada
The article sites the average American's risk of developing Parkinson's at 1%.
I really question that. My husband's father died of Parkinson's several years
ago, my own father is currently living with Parkinson's, my best friend's
father has Parkinson, and so on. Am I the only one surrounded by Parkinson's
disease, or is it a growing epidemic? I wonder if that 1% number is an old
statistic. I can't find any sources, links?

~~~
wooster
Here's a summary article of a large epidemiological study:

<http://news.wustl.edu/news/Pages/20150.aspx>

Doing the math (450,000 cases out of 36,000,000 million Medicare recipients in
the US), the adult incidence rate of Parkinson's is 0.0125, or 1.25%.

Sadly, I can't find a full copy of the study which isn't behind a pay wall.
But, from the summary, it appears Parkinson's has some "clustering" based on
both genetic and environmental factors. The text under the map on the article
indicates areas in red have an adult incidence rate of 13.8% or more, so
experiences such as yours are normal (albeit frightening).

So, yes, you're right to question that 1% statistic. It isn't sufficient to
describe the situation at all when standing by itself.

~~~
rada
Thanks wooster. You are the only person who actually answered my question. I
guess this forum has a chance :)

I wonder if with the "graying" of baby boomers, the statistic is going to
shoot up. I wouldn't be surprised if by 2020 the numbers would double, along
with the projected retirement numbers. Of course, that would mean that the
cluster areas would see rates close to 1 in 4 older adults, which would be
truly scary!

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carbocation
This isn't a new kind of science, since this is the kind of science that we've
been doing since ~2007-2008. They are basically describing GWAS.

~~~
dminor
GWAS = Genome-wide association studies

<http://en.wikipedia.org/wiki/Genome-wide_association_study>

~~~
carbocation
Good link. At the end of the day, they're doing association studies... So
they're taking a phenotype (even survey answers are a "phenotype" in a manner
of speaking) and correlating it with a genotype (whether SNPs, exome data, or
genome data). I'm a believer in this approach to science and am in no way poo-
pooing their effort; I merely wanted to comment that, from the article's
description of their approach, they're doing nothing iconoclastic.

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danbmil99
I think if I had that kind of knowledge of a fucked up disease hanging over my
head, I'd put more than .3% of my net worth into the research. I'd want to
REALLY move the needle, like alot.

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temphn
Just take a look at this silly hand wringing editorial about the innovation
described in this article

[http://plosgenetics.org/article/info:doi/10.1371/journal.pge...](http://plosgenetics.org/article/info:doi/10.1371/journal.pgen.1000965)

When the response to new and cool is "you didn't do it according to protocol",
something is definitely wrong.

~~~
mbreese
IRB review is a very important part of modern science, and the system is
simply not setup to deal with research that hasn't been throughly cleared by a
review board. You could consider IRB approval the first step in peer-review:
your study is worthwhile and you aren't going to do anything unethical.

IRBs are designed to protect the subjects/patients, the researchers, and the
institutions. To skip that step is pretty unusual, and some hoops had to be
jumped through in order to deal with it. I think the fact that the 23andMe
study was published at all was a big leap, and represents the flexibility
inherent in the scientific community.

The response to "new and cool" wasn't "you didn't do it according to
protocol". It was: since you didn't do it according to protocol, we need to
verify that you did this ethically.

Imagine what would have happened if they used someone's DNA in their study
without their knowledge. When you're talking about publishing links between
diseases and people's DNA, you better be damn sure you have permission to use
their genetic data. That is what IRBs are good for.

In a world where movies constantly are pointing out how scary/evil/unethical
scientists can be (Andromeda strain, Splice), these checks are very important,
even if it slows things down a little.

~~~
anamax
> Imagine what would have happened if they used someone's DNA in their study
> without their knowledge. When you're talking about publishing links between
> diseases and people's DNA, you better be damn sure you have permission to
> use their genetic data.

Apart from privacy and "ownership of one's genetic material", why?

Saying "Joe Smith's DNA contains a vital clue to solving parkinson's" doesn't
affect Joe's ability to monetize.

Saying the same about "unspecifed_37" doesn't affect anyone's privacy.

~~~
jokermatt999
Look up the story of Henriette Lacks and her family's reactions to finding out
scientists were using her cells in all kinds of experiments.

<http://en.wikipedia.org/wiki/Henrietta_Lacks>

There was a good episode of Radiolab about her, as well as a good interview on
Dr Kiki's Science Hour with the author of the book written about her life and
legacy.

Her family was deeply disturbed by what was happening at first. Progress is
necessary, but so is people's dignity.

~~~
chroma
_Her family was deeply disturbed by what was happening at first. Progress is
necessary, but so is people's dignity._

I don't want to be callous, but look at the cost-benefit calculation:

Cost: One disgruntled family.

Benefit: Polio vaccine. Treatments for cancer, HIV, various toxins, and other
stuff I don't know about in the 50,000 research papers on HeLa. I am not
exaggerating. There really are over 50,000 papers about HeLa.

I think the system worked very well in this case.

~~~
mbreese
That doesn't really change the fact that there were issues with her informed
consent. When HeLa cells were first derived, most of the benefits weren't even
on the radar. I don't think the initial investigators could have imagined what
would have happened, let alone the patient.

I think this is a case where the system didn't work... but more because the
science got ahead of the ethics. Sure, excellent science has been done with
HeLa cells, but it all started with an ethically ambiguous beginning. For
example: why do we know her name? This alone should never have happened.

~~~
chroma
_When HeLa cells were first derived, most of the benefits weren't even on the
radar._

Excuse me? It was the first human cell line that could grow in culture
indefinitely. Doctors and researchers immediately recognized the potential of
HeLa cells. It took less than three years before the cells were used to mass-
produce Jonas Salk's polio vaccine.

I am not exaggerating when I say that millions of people today owe their lives
to HeLa. Had doctors been forced to do what you call ethical, those people
would be dead. With so many lives at stake, the objections of the family (or
the individual) simply don't matter.

 _For example: why do we know her name? This alone should never have
happened._

Originally she was anonymized. Later, researchers wanted to get genetic
information from her living relatives. Somehow the press found out. Perhaps a
relative told them.

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mkramlich
He of all people I would expect to just google for it.

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napierzaza
Hehe. His "search" for the cure.

~~~
napierzaza
I was just pointing out the amusing headline that Wired chose. On purpose I'm
sure.

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jleyank
Data sample, n = 1. Michael J. Fox supposedly smoked like a demon in younger
days. Has Parkinson's.

~~~
faboo
"Cigarette smokers also seem to have a lower chance of developing Parkinson’s"

I realize it's not really a science article (it's even possible all the
information on Parkinson's came directly from Brin himself), but they didn't
say cigarette smoking staved off Parkinson's completely - they said it lowered
the odds of it developing.

Thing is, the human body is so complicated, you can do all the right things
and still come up on the short end. Load up on omega-3s and still get clogged
arteries. Eat a well balanced diet and still get cancer.

Doing the "right" things can only improve the odds - something's going to get
to you in the end.

~~~
jodrellblank
"Thing is, the human body is so complicated, you can do all the right things
and still come up on the short end"

It's complicated, but it's not magic. If you are doing things to avoid a
problem and you get the problem, then you were not doing "all the right
things" - your understanding was wrong.

~~~
anamax
> If you are doing things to avoid a problem and you get the problem, then you
> were not doing "all the right things" - your understanding was wrong.

Nope. "All the right things" isn't a guarantee and since you can't do anything
about your dna, some folks are going to have risks no matter what they do.

For example, you can get unlucky wrt a mutation or a cosmic ray.

