
How Anne Wojcicki’s 23andMe Will Mine Its Giant DNA Database - woodgrainz
https://www.forbes.com/sites/bizcarson/2019/06/06/23andme-dna-test-anne-wojcicki-prevention-plans-drug-development/
======
lokl
DNA sequences should be viewed differently than other personal data, since
they are personal not only for you, but also for your children, grandchildren,
siblings, parents, etc. When you make a decision to share this data, you are
making a decision for them, too. The implications might not be the same for
your great-great-grandchildren, but who can tell whether the impact will be
better or worse? How will it be possible to use the information in the future,
when technology, science, law, politics, and social customs might be quite
different?

We often see complaints about big companies selling their users' personal
data, but in this case the decision lies with each individual who shares his
DNA sequence. Do you believe it is ethical to share your relatives' personal
data without their consent?

~~~
endorphone
You are leaving a DNA trail in your wake, and it's only private or personal
insofar as no one looked at it. But it seems like it's something that we
really have no hopes of keeping private over any reasonable timeline into the
future.

~~~
mtgx
Aren't we moving the goalposts as technology advances?

For instance, your DNA used to be private in the past simply because no one
could do anything with it even if they would get it. So you benefited from
this privacy aspect by default. In the next 20 years your DNA will probably be
in multiple databases somewhere even if you never offered it to companies.

Similarly, in the past you may have benefited from the privacy of your own
home. You could say or do anything you wanted and that would be kept private
(for the most part). Now, with all the "always-on" smartphones and smart home
devices and surveillance cameras, everything you do or say in your home will
be on someone else's server, which can be data mined, sold to third-parties,
requested by various law enforcement agencies, and stolen by cybercriminals.

It seems to me that from your point of view and with enough technology
advances we'll have 0% privacy in the future. Everything around us will listen
to us and watch us, and then others, with who you may have never interacted,
will also get to see and analyze all of that data.

So the technology could enable all of this -- but the question is _should we
let it?_ Privacy is a human right for a very good reason -- abuses against
someone's private life can lead to all sorts of nefarious things against that
person, whether it's something as "benign" as increasing your insurance rates
to not offering your free/cheap healthcare because you "live too dangerously"
or malicious actors and government agents using it to destroy your life for
profit or personal vendettas.

~~~
endorphone
In the case of smart devices in your home we do still have a choice -- just
don't buy them or use them, or ensure that the ones you do use have strong
protections, etc. However with DNA it is like you are screaming it in
countless public places daily and it was only ignorance that protected its
privacy. That time is rapidly coming to a close. The cost and time of
processing it, once prohibited, has fallen through the floor and soon enough
just doing mass dragnets is going to be trivial. It seems likely that
generating facial profiles from DNA is not too far off either. Couple that
with a facial recognition system and you have a deep identity.

We should fight it as possible, but we'll see how far that gets us.

------
siculars
Anyone surprised? For this and other reasons I've refused to use their service
and other services like theirs.

Here's a service. Pay to get your panel/exome/whole genome sequenced, put your
data on gcp/aws/azure, user open source to do variant analysis and pay a
specialist for their computer aided analysis.

Guess what, you own your data end to end. I imagine the above could be had for
less than $2k. Some startup will write the software stack to do this and
simply sell licenses for software you run anywhere you want.

~~~
testvox
Federal law requires that labs retain the results of genetic testing for a
minimum of 10 years.

> Reports of genetic testing must be retained for at least 10 years.
> Electronic records are acceptable. Specific regulations for specimen
> retention are not proposed, but each laboratory must have a written policy
> defining its own specimen retention policy.

[http://clinchem.aaccjnls.org/content/45/5/739](http://clinchem.aaccjnls.org/content/45/5/739)

~~~
astazangasta
This is for CLIA tests, i.e. clinical tests. 23andMe is explicitly NOT this as
they can't make medical claims. Just getting a piece of DNA sequenced does not
require this kind of retention; GP is right, this is a viable business plan.

Data retention is the next big wave and these companies would do well to clue
in. There is zero chance they will find anything medically useful with their
database and a ton of outstabding liability once people realize how it can be
abused.

~~~
eweitz
23andMe is CLIA certified and FDA authorized, and makes many medical claims.
From [1]:

"CLIA certification and CAP accreditation 23andMe laboratory testing is done
in U.S. laboratories certified to meet CLIA (Clinical Laboratory Improvement
Amendments of 1988) standards, including qualifications for individuals
performing testing and other standards to ensure the accuracy and reliability
of results. The laboratory is also accredited by the College of American
Pathologists (CAP), which has served as a model for various federal, state,
and private laboratory accreditation programs throughout the world."

FDA authorizations for 23andMe's personal genome service are available online,
e.g. [2] for Alzheimer's disease risk reporting based on the E4 variant of the
APOE gene.

The company also offers ancestry reports, which are not clinical and thus
covered by CLIA. But medical claims in 23andMe's health reports do comply with
CLIA and other regulations.

1\. [https://medical.23andme.com/dna-
kits/#clia](https://medical.23andme.com/dna-kits/#clia)

2\.
[https://www.accessdata.fda.gov/cdrh_docs/pdf16/DEN160026.pdf](https://www.accessdata.fda.gov/cdrh_docs/pdf16/DEN160026.pdf)

~~~
astazangasta
Hmm, news to me. In any case the point still stands that you can do SNP
sequencing without being CLIA certified.

------
iandanforth
I'm not a huge fan of GSK making money off this data, but I am a huge fan of
having the data be available. Did you know you can download all your 23andMe
data and make it publicly available through openhumans.org? Here's mine:

[https://www.openhumans.org/member/iandanforth/](https://www.openhumans.org/member/iandanforth/)

I want this data out there to help any and all researchers. The more free,
public data exists the easier it is for researchers without GSK levels of cash
to make discoveries and contribute back to the community. Just like OSS,
someone has to be willing to give away something that has historically been
sold. I'm willing to do that and I hope you will as well.

~~~
wpasc
Thank you for being so open. I feel similarly about my own genes but I do not
have them sequenced yet. A lot of people are talking about the security
concerns and whose making money.

Valid concerns, but I think medicine does need vast amounts of genetic data
available to actually make some progress. Medical progress is not advancing
fast enough by some very real metrics (5 year cancer survival rate over 40
years is not at ALL impressive when you factor in diagnoses being made
earlier).

Ownership of this data is important, but if genetic data was more freely
shared I think medical progress would benefit.

~~~
maxheadroom
> _...but I think medicine does need vast amounts of genetic data available to
> actually make some progress._

How does more genetic data equate to better progress with medicine? Are we
testing medicine against specific genome sequences, now? If so, how are we
doing that without the source host[s] to test against?

> _Medical progress is not advancing fast enough by some very real metrics..._

Again, I'm not seeing how these two equate, whatsoever.

For what you're talking about the genomes would have to be reproduced, such as
the markers that are the precursors for breastcancer. Then, the tissues,
themselves, would have to be reproduced and _then_ you'd have an effective
field with which to test new medicines against (unless you just use the people
with the markers to test).

How you're getting from a mapped sequence to better medicine is... ...we're
simply not there, yet, technologically, I believe. Unless you know something I
don't? ( _Which could very well be the case, admittedly, but I doubt we 're at
the stage of computer models for genome engineering, tissue growth, cellular
division, etc. all in one._)

~~~
eweitz
Large genetic datasets yield medical progress by increasing statistical power
of tests. These better tests enable earlier and more targeted treatment.

Take heart disease. It has a significant but complex genetic component. Many
genetic variants each contribute a small amount to risk for heart disease. If
a given person has many small risk variants, the sum total risk -- often
called "polygenic score" \-- can be relatively high.

People in the top 8% of polygenic scores had a 3x higher risk for heart
disease than the general population [1][2]. Through techniques like polygenic
scoring, large genetic datasets enable uniquely early detection of high risk
for the world's leading cause of death.

[1]
[https://www.nature.com/articles/s41588-018-0183-z](https://www.nature.com/articles/s41588-018-0183-z)

[2] [https://www.vox.com/science-and-
health/2018/8/24/17759772/ge...](https://www.vox.com/science-and-
health/2018/8/24/17759772/genetics-polygenic-risk-heart-disease-nature)

~~~
maxheadroom
Ah, yes, polygenic scoring and the heart disease increase rate. Did you happen
to catch this[0] refutation of the single source's work?

[0] -
[https://twitter.com/cecilejanssens/status/103135930540723404...](https://twitter.com/cecilejanssens/status/1031359305407234048)

Also, you're posing prediction and targeted treatment but you haven't posited
_how_ Bob's mapped genome sitting in 23andme will be used for medical
treatment.

As we know, genes are not an emphatic, "this will happen to you," but an
increase in likelihood; which still doesn't translate to any emphatic
treatments from the genes, themselves, yeah?

~~~
eweitz
> refutation of the single source's work

Janssens seems less skeptical of 23andMe's paper on polygenic score for type 2
diabetes [1][2], which -- interestingly -- positively cites the Khera 2018
paper on polygenic score for heart disease that she critiqued. Some
researchers are skeptical, but the medical community generally seems to
consider polygenic scores promising for tests [3][4].

> you haven't posited how Bob's mapped genome sitting in 23andme will be used
> for medical treatment.

Early intervention. Polygenic scores could be used for medical treatment by
motivating earlier intervention. That could include stronger recommendations
for better diet and exercise, closer monitoring programs, or more precise
prescriptions. That, in turn, could reduce disease burden.

[1]
[https://twitter.com/cecilejanssens/status/113707970323438797...](https://twitter.com/cecilejanssens/status/1137079703234387971)

[2]
[https://permalinks.23andme.com/pdf/23_19-Type2Diabetes_March...](https://permalinks.23andme.com/pdf/23_19-Type2Diabetes_March2019.pdf)

[3]
[https://twitter.com/EricTopol/status/1129780543434964993](https://twitter.com/EricTopol/status/1129780543434964993)

[4]
[https://journals.plos.org/plosmedicine/article?id=10.1371/jo...](https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1002546)

~~~
maxheadroom
> _...could be used for medical treatment by motivating earlier
> intervention..._

and

> _...could include stronger recommendations for better diet and exercise,
> closer monitoring programs, or more precise prescriptions..._

and

> _...could reduce disease burden..._

This is where the problem delineates for me: We're being massively assumptive
in moving from "could" to "is" and "will".

I will, generally, concede the could portion but to assert that it is
emphatically happening or going to happen is still far from fruition and to
label this science as such, just yet, is overreaching and giving false hope
where none should really be given because, then, you'll taint it's benefits
with the drawbacks.

Remember: Anonymised data (e.g.: 23andme) only allows a survey of what's
relatively known or can be inferred from the anonymised dataset.

To arrive at what you're suggesting, it would have to move into a different
realm (I believe), like UK BioBank or GEDMatch but, even then, we're still
basing things on speculative science - gambles of percentages that aren't,
emphatically, true or false but a kind of "maybe, kind of, sort of, in a way,
definitely could or defintely could not" muddied waters.

That, to me, is a far stretch from saying that the data in 23andme is -
actually - helping medicine; which I believe is what the OC I replied to
emphatically said.

------
buboard
I am for one glad my data is in there. Disease and aging should be our number
1 priority. If your governement and insurance systems are shitty and spy and
exclude people, you should fix that instead of putting barriers to science
opportunity.

~~~
devmunchies
> Disease and aging should be our number 1 priority

Humans are ballooning as a species and hurting the planet and causing other
species to go extinct... and you want to eliminate disease and aging from said
species?

~~~
Creationer
Only specific sub groups are doing that:

[https://www.populationpyramid.net/static/population-
projecti...](https://www.populationpyramid.net/static/population-
projections.png)

Or to be specific, Africa and West Asia, due to a lack of access to
contraception. That can be solved by redirecting 100% of aid towards
education, contraception and abortion for women, and away from food aid.

~~~
neodypsis
Your proposed solution may sound unorthodox, but it's an interesting view on
how to solve the problem in the long term. Although I don't think it will be
viable politically nor socially accepted.

------
lymeeducator
The main priority of these medical and genetic companies is to make money.
Safety, ethics and privacy are secondary until they effect the profit. It
seems increasingly apparent that public funding and open source efforts are
required to advance the science, healing and education of our planet.

DNA SNPs are one thing, but genetic expression (phenotype) is immensely
complex due to the number of variables. For example, mammalian immune systems
are highly redundant across the body and continually signal with cytokines and
chemokines to manipulate the immune response that is internally/externally
environment dependent. Our bodies continually work to remove/detox OR
sequester pathogens, toxins, metals, etc. This usually results in isolated
and/or systemic inflammation across the body. Many of the pathogens manifest
with overlapping symptoms making it hard to isolate without better diagnostic
tools. For example, my two strains of Bartonella cause inflammation in many
similar areas that Lyme bacteria do and Babesia has another similar set. It is
hard to isolate those symptoms from the mold toxins and metal (aluminum,
arsenic, lead) buildup that I also have. Functional doctors believe the HLA
SNPs play a role in accumulation rather than removal. Enter saunas/sweat
tents/etc that many cultures used for centuries (lymphatic detox).

Enter public funding to invent better and cheaper measuring equipment where
each of us owns the data. Privacy protection is also important. We live on a
planet with immense biodiversity, albeit shrinking daily due to human
activities, where we coexist with bacteria, pathogens, molecules, industrial
toxins, etc -- It's time we start to learn more about everything ... gathering
data in a coherent schema and applying ML can certainly help.

That is why there are a number of studies that list various pathogens in brain
deposits for Alzheimers, MS, Giant Cell, etc -- Feel free to google and
research many of the terms above and reach your own conclusions :-)

------
ianai
When will people place a value on their personal data? A video uploaded with a
copyrighted song in the background can be challenged by the IP owner and often
is. But even with public outrage over things like PI breaches at Equifax,
23andme gets full ownership of peoples’ dna.

~~~
erikig
Let’s play devils advocate - “So what? What is the big deal if my DNA info is
out in the public?”

~~~
paulryanrogers
Are you comfortable paying more for health insurance because you lost the
generic lottery? How about facing persecution because of your ancestry? Hiring
discrimination?

(Of course the data doesn't have to be accurate or the analysis correct to
suffer.)

~~~
hannasanarion
That's been illegal since 2010.

And besides, 23andme's research data is anonymized.

~~~
ianai
Then how did they identify a murderer from the dna submitted from a
cousin/relative?

~~~
buboard
the user had uploaded their exported 23andme (or similar) data to GEDmatch on
their own volition.

------
rando444
_> Wojcicki was also building out an in-house drug-research group and tapping
into a new revenue source: recruiting thousands of patients from 23andMe’s
database for pharmaceutical firms’ clinical trials._

This is the most responsible way to use the data.

The way this model works is that a pharmaceutical companies have a question
that requires a genetic database to answer. They then pay 23andMe for the
results of these tests.

23andMe does not have to give up any customer data to any third party and can
at the same time build a solid business model around using their data for
positive medical advancements.

------
draklor40
Hasn't anyone ever watched Gattaca before shipping their DNA sample to a
Silicon Valley company ?

~~~
hannasanarion
Gattaca is not a documentary

~~~
neolefty
Neither is the 2059 Genetic Equality Program, described in this op-ed:
[https://www.nytimes.com/2019/05/27/opinion/ted-chiang-
future...](https://www.nytimes.com/2019/05/27/opinion/ted-chiang-future-
genetic-engineering.html)

------
vajaya
I regret taking their test with 200 bucks now. It used to be novel and years
back, the concept of a totalitarian society with surveillance, database,
social credit was still very remote

~~~
jdavis703
In the UK credit scores have been tied to social behaviors like voting.
Similarly London has been famed for their CCTV system that allegedly keeps
crime low. And let’s not forget the CompStat database system that is credited
with turning NYC from one of the most dangerous western cities to one of the
safest. My point is, that at least within the time range of cheap genetic
tests, these “totalitarian” systems have already been in place.

~~~
qbaqbaqba
> voting

How?

------
drilldrive
Anne Wojcicki, ex-wife of billionaire Sergey Brinand whose sister is CEO of
Youtube is at the helm of the most invasive and extensive data set known to
man. Don't fool yourselves: DNA databases form the bedrock of de-anonymization
so crucial to the Surveillance State, containing the non-consentiory grounding
of your existence and your lineage. And let us not forget the easiness of
collection, for a sample of sputum suffices.

------
jnordwick
This is so rude and self-aggrandizing: "Anne Wojcicki is 45 minutes late,
something so encoded in her habits as 23andMe’s CEO that employees have
stopped complaining about it. They know it’s hardwired. They know it’s
hardwired. On a Thursday morning in April, her team is waiting patiently as
she swirls into the company’s headquarters"

From the opening sentence, I already don't like her.

~~~
dang
Ok, but please don't post unsubstantive comments here.

------
c3534l
Why isn't this protected medical information?

------
ryanmarsh
Some time ago a friend who works at a biotech startup in the DNA sequencing
space told me there’s no way 23andMe’s price covers the sequencing cost and
that they must be subsidizing the kits so they can sell the mined data later.

------
highstep
quick america! fix your health system before the insurance companies know all

~~~
dymk
It's been illegal to discriminate health insurance based on DNA content since
2010

~~~
shakyshakyshaky
And as we all know, insurance companies never do illegal things

------
eristalt
I recently interviewed with a 23andMe employee and specifically asked about
the company's concerns regarding the public's perception of data privacy. The
23andMe employee was _absolutely adamant_ that 23andMe would _never_ sell
customer data or allow anyone else access to it for commercial reasons. They
said it went totally against company principles and that the company cares
deeply about it.

And now this. I wonder if that employee was just not very attentive to what
was actually going on, or perhaps the company leadership deceived the rest of
the company? Or maybe this is just yet another example of a once-noble company
inevitably succumbing to the allure of "growth at all costs".

------
unixhero
You can always fake your name when you submit the DNA. Then this doesn't
really matter.

~~~
vajaya
or can you? you have your credit card information surrendered.

------
puskavi
Good luck getting an insurance when they got your DNA

------
sonnyblarney
\- Business model? "... generating an estimated $475 million in revenue for
the company, which has yet to turn a profit."

\- Medical legitimacy? “Effectively what you have is a technology that is
neither that helpful [nor] that harmful (...) Dr. Jonathan Berg, a clinical
geneticist at the University of North Carolina at Chapel Hill."

\- PR Signaling? “It was so unacceptable to her as a compassionate human,”
says Ashley Dombkowski, (...) “She is undeterred by massive, worthwhile
problems.”

\- Personal Branding? Cue the Jobs-esque clad-in-black shots.

\- 'Certainty' in the face of material uncertainty? "By October 2013, 23andMe
was in talks with Target and Wojcicki was pushing hard to enter stores before
the holidays (...) Emily Drabant Conley, recalls Wojcicki’s certainty when an
exec thought it was impossible to meet the time line: “Anne was like, ‘This is
a company that was founded on impossible.’” But in the end, impossible won. It
would take three more years for 23andMe to get onto Target’s shelves. "

... so where have seen seen this before?

I'm glad that Forbes is taking a slightly more skeptical tone this time, at
least calling out some of the issues and not taking PR at face value.

I actually hope they are successful, though I'll never participate due to
obvious privacy concerns.

------
draklor40
Hasnt anybody ever watched Gattaca ?

