
Inside 23andMe founder Anne Wojcicki's $99 DNA Revolution - stfu
http://www.fastcompany.com/3018598/for-99-this-ceo-can-tell-you-what-might-kill-you-inside-23andme-founder-anne-wojcickis-dna-r
======
homosaur
I think this company is interesting but am disturbed by every time I read an
article about them, they just laugh off privacy concerns.

It's not 2013 I'm worried about with someone accessing this data, it's 2023.

Says Andy Page: "I view this as a tidal wave of inevitable data and a trend in
the marketplace. The technology is available; the price point is decreasing.
There are so many organizations and engineers and companies that are focused
on this."

Of course you see it as a trend, or at least your pocketbook depends on it
being one. The fact that he isn't responding with all the robust steps they do
to protect data leads me to believe there's not enough concern at this company
for privacy to trust them. Maybe that's okay when it's yet another SV social
bullcrap site, but for medicine? Nah.

~~~
dil4heys
And you thought Zuckerberg was bad.

The cavalier attitude towards privacy that pervades the field of genomics is
deeply troubling to me. From the article: "23andMe's privacy statement clearly
states that it collects a person's genetic, registration, web browsing, and
self-reported information. The company can share its data with third parties
'[after] it has been stripped of Registration Information and combined with
data from a number of other users sufficient to minimize the possibility of
exposing individual-level information while still providing scientific
evidence.'"

Having read that, consider that "a team of geneticists reported Thursday in
the journal Science that it was able to figure out the names of people who had
donated their DNA to research -- even though test subjects' identities were
stripped from their genomic data." (Source:
[http://articles.latimes.com/2013/jan/18/science/la-sci-sn-
ge...](http://articles.latimes.com/2013/jan/18/science/la-sci-sn-george-
church-dna-genome-privacy-20130118))

Anne Wojcicki, co-founder of 23andme, is married to Google co-founder Sergey
Brin. It doesn't seem entirely implausible that the two companies could have
joint business ventures down the road. I wonder how valuable "anonymized"
genomic sequences would be to advertisers.

~~~
dweinus
From the LA Times article: "Using information posted to genealogy websites and
other publicly available Internet resources, the Whitehead Institute
researchers were able to ferret out the names of nearly 50 people"

They don't link the study, so it is hard to tell, but it appears that what
actually happened is they used self-reported identifying information linked to
DNA entries.

It's not apparent that they did any genetic analysis whatsoever.

That is still certainly a privacy attack vector, but one on par with getting
your email hacked because you always use your birthday as you password.

~~~
berberous
That's not correct. The Personal Genome Project (PGP) is a Harvard-run study
that aims to get 100k people to publicly post their full genome, along with
their health and trait information.

The study took some of these public DNA samples, and searched genealogy
databases to find likely relatives. The self-reported surnames were thus those
of distant relatives, not of the PGP-participants themselves. The researches
then combined those likely surnames with information such as zip codes on the
PGP public profiles to correctly identify several participants (given that a
zip code, gender, and surname is often enough information to uniquely identify
a person).

It should be noted that the PGP has a rigorous education and consent process
of the risks of publicly posting DNA. So while the study may have surprised
some of the participants, it's not something any of them were expecting could
never happen.

You can read more info on the study here:
[http://www.wired.com/wiredscience/2013/01/your-genome-
could-...](http://www.wired.com/wiredscience/2013/01/your-genome-could-reveal-
your-identity/)

~~~
dweinus
Thank you, I stand corrected! Thanks to the other commenter with the study
link too.

------
jrochkind1
The thing about 23andMe, is that that kind of genetic testing really does not
tell people what people think they are being told. The amount of actual
actionable information you can get from a gene map like that is.... a LOT more
limited than people such as 23AndMe customers think.

Here's just one article on that, just the first reasonable one I found
googling: [http://www.forbes.com/sites/stevenkotler/2012/12/13/what-
is-...](http://www.forbes.com/sites/stevenkotler/2012/12/13/what-is-23andme-
really-selling-the-moral-quandary-at-the-center-of-the-personalized-genomics-
revolution/)

So the real thing about 23AndMe, is how they took advantage of very popular
misconceived exagerated expectations about a) the extent that genetics are
destiny, and b) even to the extent that genes are destiny (less than you
think), the extent that current science can actually succesfully figure that
out -- to make a lot of money.

These are EXTREMELY popular misconceptions, they fit into the zeitgeist well.
So 23AndMe can make a lot of money off them.

(And I'm not suggesting that the 23AndMe principals are intentionally taking
people for a ride--I'm sure they believe it too.)

~~~
neilc
_The amount of actual actionable information you can get from a gene map like
that is.... a LOT more limited than people such as 23AndMe customers think._

I wouldn't be so sure that 23andMe's business model depends on their customers
being uninformed -- for $99, you don't need a vast amount of actionable
investment to justify the purchase. Hell, getting your teeth cleaned without
insurance can easily cost you more than $100. I wasn't expecting a ton of
actionable insight from 23andme, but I don't regret spending the $99.

~~~
jonlucc
I agree with this. The profit for 23AndMe comes on the backend, not from the
kits.

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lnanek2
Site is pretty grueling, though. I have dozens and dozens of DNA sharing
requests, but it takes like 4 clicks for every single one to OK it. Sometimes
they are people I knew anyway once I see their name, sometimes it ends up
being an interesting conversation with just someone from the same area as my
great grandparents, but every time it's an annoying click fest to find out.

~~~
Maciek416
Agree. It's definitely a sub-par user experience. You often have to sift
through dozens of connection invitations for people who clearly haven't found
you on the cousin identification list -- instead they've simply searched by
country name, or city name, and are randomly asking people if they might be
related. Given that the system has a pretty reliable way of identifying 10th-
or-closer cousins and immediate family relations, it seems pointless to have
any other way to connect with people on the site. More frustrating still is
that most of the time when you try to make contact with people who have been
identified as very likely 3rd or 4th cousins, those invitations are met with
silence.

------
angersock
So, is there someplace I can get my own sequencing done, and the samples
destroyed or rendered useless afterwards? It'd be nice to help prevent people
from making more angersocks at sometime in the distant future.

------
joering2
Be extremely sure you want this, because per their TOS the return is the price
you paid minus around $25 for the spit kit. Even unopened kit won't be
accepted/money refunded, I was told via their helpdesk.

The thing that got me to change my mind was some blogger article that was
going through their TOS/PP and realized that once you do this test, you are
legally obligated for revealing results to the insurance company you plan to
be insured with. Not sure how much the truth it is, but this plus the owner
sleeping in one bed with Google's Brin ("hey honey so how is it going with
collecting peoples DNAs? - very good - okay keep up the good work, in couple
years I will buy you out then we can match your DNA database with their credit
card / name / dob and attach it to their Google profile so we serve them more
matching ads", turned me away for good.

~~~
dil4heys
"...once you do this test, you are legally obligated for revealing results to
the insurance company you plan to be insured with."

Got a citation for that?

If that's true, then getting a 23andme test could mean price gouging for
anyone looking for life insurance, disability insurance or long-term-care
insurance. The Genetic Information Nondiscrimination Act (GINA,
[https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...](https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act))
prohibits employers and health insurance companies from genetic
discrimination, but there's a big loophole for other types of insurers to.
More information: [http://www.npr.org/blogs/health/2013/01/17/169634045/some-
ty...](http://www.npr.org/blogs/health/2013/01/17/169634045/some-types-of-
insurance-can-discriminate-based-on-genes).

~~~
joering2
+1 for link but no I am sorry no citations I was looking for the same article
but I cannot find it. Basically the reasoning behind it was that a DNA test
can potentially reveal some information to you about your eventual future
diseases. Now when you sign up for life insurance you are legally bind to tell
the truth and tell everything you know about your health status. If in some
limited scope of course you will get into lawsuit with health insurance
company, its possible they subpoena 23andme and get the information you
initially had access to. That was the point.

------
smrtinsert
Time and time again they get so much press. There are way better services in
almost every direction such as those offered by Counsyl
([https://www.counsyl.com/](https://www.counsyl.com/)). Forget 23andme, it
just seems to be the tech celebrity/ivy league circuit at work.

------
pknight
Given the amount of things we don't know about DNA, I would not put my trust
in this kind of endeavour. Just look at the fast developing area of
epigenetics, or the simple fact that many studies appear not to be replicable,
or the fact that when money is involved groups tend to paint a certain picture
that may not necessarily be accurate. The genome project was a hyped up affair
and its results nowhere near as revolutionary as people made out to be in
advance. Meanwhile, the downsides of large scale DNA testing are potentially
chilling. Given how 'kindly' organisations treat sensitive information,
there's no basis for this kind of trust.

------
tokenadult
The article reports, "'The long game here is not to make money selling kits,
although the kits are essential to get the base level data,' says Patrick
Chung, a 23andMe board member and partner at the venture-capital firm NEA.
'Once you have the data, [the company] does actually become the Google of
personalized health care.' Genetic data on a massive scale is likely to be an
extremely valuable commodity to pharmaceutical companies, hospitals, and even
governments. This is where the real growth potential is."

This statement is based on the assumption that once 23andMe has the 25 million
people sign up that the founder desires, that their genotypes (at the
resolution of testing that 23andMe can provide) will actually provide a lot of
actionable information.

But there is a LOT of reason to doubt that hope. I was just at the weekly
meeting of my alma mater's journal club on behavior genetics today, and the
papers we discussed today are about rare variants in DNA and their possible
relationship to human disease.

Casals, F., & Bertranpetit, J. (2012). Human Genetic Variation, Shared and
Private. Science, 337(6090), 39-40. doi: 10.1126/science.1224528

Brookes, K. J. (2013). The VNTR in complex disorders: The forgotten
polymorphisms? A functional way forward? Genomics, 101(5), 273-281. doi:
10.1016/j.ygeno.2013.03.003

Maurano, M. T., Humbert, R., Rynes, E., Thurman, R. E., Haugen, E., Wang, H.,
. . . Stamatoyannopoulos, J. A. (2012). Systematic Localization of Common
Disease-Associated Variation in Regulatory DNA. Science, 337(6099), 1190-1195.
doi: 10.1126/science.1222794

Schork, A. J., Thompson, W. K., Pham, P., Torkamani, A., Roddey, J. C.,
Sullivan, P. F., . . . Schizophrenia Psychiat Genomics, C. (2013). All SNPs
Are Not Created Equal: Genome-Wide Association Studies Reveal a Consistent
Pattern of Enrichment among Functionally Annotated SNPs. Plos Genetics, 9(4).
doi: 10.1371/journal.pgen.1003449

It is dismaying likely that even millions of well-genotyped samples will
provide very little illumination of the development of disease risk in human
beings. For you to get actionable information from 23andMe, moreover, you have
to count on 23andMe having detailed personal health information about yourself
and the other 23andMe customers: "But first Wojcicki needs spit. Her goal is
to sign up a million customers by the end of 2013. Eventually, she says, 'I
want 25 million people. Once you get 25 million people, there's just a huge
power of what types of discoveries you can make.'" Translated into English,
that says that the company has very little information to offer yet, and wants
you to pay for the privilege of providing highly personal information in the
hope that the company can use your information to draw in other customers. I'm
not optimistic that that will even help your fellow customers, as I learn more
about current genomics research. This business plan certainly puts a premium
on the company having ironclad guarantees of customer data privacy, and
gathering lots of personal health information on the strength of those
guarantees. It's an open question whether this is really a good trade-off for
you or me or any other individual.

~~~
dekhn
Were you aware that 23&Me also had an exome sequencing pilot ?
[https://www.23andme.com/exome/](https://www.23andme.com/exome/)

That addresses the "resolution of testing that 23andMe can provide".

The other point is that humans cluster into a small number of haplogroups, and
with a small number of WGS or exomes, we can impute many things on the other
lower-resolution data based on the fact people are very closely related.

I'm not defending the current approaches (GWAS, etc). They are known-broken.
Nor am I defending exome sequencing - also known-broken.

Anyway, it's trivial now to do 1000+ genomes at 4X coverage, which gets you
many of the rare variants.

Of course, at the end of the day, the current approaches are unlikely to
unlock the full medical potential of the genome. Most people studying genomics
and health have very limited mental models of how cells and tumors and organs
work, and none of the existing methods really do anything beyond correlation
analysis on noisy data.

~~~
toomuchtodo
I was a 23andme.com customer from the very beginning; didn't know they had an
exome beta. Thanks for the info, signed up waiting to be in the next batch!

~~~
dekhn
Illumina does WGS for $5000. It's more than just that, there is a whole
conference you attend to learn more about the process and what it means. I
think you also get an iPad. :-)

[http://www.illumina.com/company/events/understand-your-
genom...](http://www.illumina.com/company/events/understand-your-genome.ilmn)

It's new business development- Illumina's interested in jumpstarting the
clinical WGS/consumer genetics industry, so they hold things like this,
expecting other companies will pick up the model and focus on it).

Because Illumina makes money on the consumables, having such an industry will
be very profitable for them.

~~~
toomuchtodo
Thank you for this info!

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pdfcollect
Owned by Google = Privacy nightmare?

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andyl
The website looks like amateur hour. The service relates somehow to health AND
ancestry, AND to keep updated on DNA science.

Spaghetti on the wall, with poor execution. People invested $126 million in
this? The emperor has no clothes.

~~~
seiji
Some may say it's easier to get investment when you start a startup and your
husband is a billionaire founder of google.

