
GlaxoSmithKline makes $300M investment in 23andMe, forms 50-50 R&D pact - adenadel
https://www.fiercebiotech.com/biotech/glaxosmithkline-makes-300m-investment-23andme-forms-50-50-r-d-pact
======
dayvid
I asked 23andMe if there was any way to delete my genetic data from their site
after the Equifax hack news. From their response:

"23andMe and our third party genotyping laboratory will retain Genetic
Information, date of birth, and sex as required for compliance with applicable
legal obligations, including the U.S. Federal Clinical Laboratory Improvement
Amendments of 1988 (CLIA), California Business and Professional Code Section
1265, and College of American Pathologists (CAP) accreditation requirements.

23andMe will also retain limited information related to your account and data
deletion request, including but not limited to, your email address, account
deletion request identifier, and record of legal agreements for a limited
period of time as required by contractual obligations, and/or as necessary for
the establishment, exercise or defense of legal claims and for audit and
compliance purposes.

We recommend that you review our full Privacy Statement for more information
about deleting your data before submitting your request."

So basically, once your in their system, you can't get out.

And you're paying them money for this.

Any way to do self-DNA testing?

~~~
breck
I believe there are services that will do whole genome seq for you for under
$10k(and I assume won’t keep your data). You could then use Promethease for
analysis.

I’m unaware of any way you could do self-DNA testing at home unless you wanted
to spend $100k+ on equipment, reagents, etc. The Nanopore might be relevant
but I haven’t looked into it much.

~~~
beaugunderson
Full Genomes Corporation[1] will do WGS at 30x for $1295, WGS at 20x for $900,
and Long Read WGS (newer technology) for $2900.

For Prime Day, Dante Labs[2] had a sale on a 30x WGS for $349; it's still on
sale for $499.

Once you have a WGS you might consider donating it to the Harvard Personal
Genomes Project[3], Open Humans[4], or putting it on GitHub[5].

[1]: [https://www.fullgenomes.com/whole-genome-
sequencing/](https://www.fullgenomes.com/whole-genome-sequencing/)

[2]: [https://us.dantelabs.com/products/whole-genome-sequencing-
wg...](https://us.dantelabs.com/products/whole-genome-sequencing-wgs-full-dna-
analysis)

[3]: [https://pgp.med.harvard.edu/](https://pgp.med.harvard.edu/)

[4]: [https://www.openhumans.org/](https://www.openhumans.org/)

[5]:
[https://github.com/beaugunderson/genome](https://github.com/beaugunderson/genome)

~~~
fapjacks
I've purchased a handful of Dante Labs 30x WGS kits on Amazon over the last
couple of days. You didn't hear it from me, but the kits are still on sale on
Amazon for $349...

... And an additional secret $100 discount during checkout.

This is $250 WGS at 30x coverage. It should be front-page news.

~~~
cncrnd
Are the results of WGS + analysis with promethease more insightful than the
results of 23andMe?

~~~
berberous
Not for me. You obviously have more data, but like 23andme,I found very little
of it to be actionable or useful. YMMV

~~~
cncrnd
What'd you use to analyze your genome, promethease?

I think that increased risks of x,y,z would be good to be aware of.

~~~
berberous
Yes, promethease. Have you done 23andme? It also gives you increased risks,
but usually none that are helpful. For example, if it says that you have some
Snaps that increase your risks of prostate cancer from 1 in 100 to 2in 100,
what do you do with that? 2 in 100 is still so low (even though double
baseline population risk), that it's not going to effect my decisions. That's
also assuming it's accurate -- other SNPs may lower your risk.

~~~
cncrnd
I haven't done it because of privacy concerns, but I am considering WGS
through a lab then promethease instead.

I don't think understanding risk would affect my decisions much either, but
I'd probably get familiar with the symptoms of things I have a higher chance
of to be able to recognize issues earlier. If there are screenings available,
maybe I'd start doing them a little earlier or more frequently than
prescribed.

------
ironjunkie
I don't want to spread FUD but why would ANYONE in their right mind give their
DNA to a company in Silicon Valley that is explicitely using Google as a model
for Data privacy ? (The founder of 23AndMe is the ex-wife of Google founder).

Even worse, people are actually PAYING quite a lot to get the privilege of
having that company playing with your most private data.

This field needs to be heavily regulated. In 20 years we will be able to
extract all type of crazy information from DNA and it might be our biggest
liability if it is shared across private companies. This will truly be the
dystopian future, in which every business will make a decision based on your
public DNA profile.

As everything in Silicon Valley, they are hiding behind the fact that it can
be used to make "The world a better place" and cure sone diseases. It should
be clear what the end goal is though.

~~~
Shank
> In 20 years we will be able to extract all type of crazy information from
> DNA and it might be our biggest liability if it is shared across private
> companies. This will truly be the dystopian future, in which every business
> will make a decision based on your public DNA profile.

I really doubt this. I've been genotyped by 23andMe and the most interesting
information I've seen from their health reports are a handful of disease
probabilities and some fairly useless-to-me traits (like, for instance, a
probabilistic view of my hair color). Even if you jump into the fray with
something like Promethease or look at data on SNPedia, each SNP only has a
handful of studies and there's little to no research on hundreds of thousands
of SNPs. Only a few sets have been analyzed for specific purposes like
Alzheimer's and rare diseases, and those are indeed rare.

Science doesn't advance like the technology industry. It takes slow,
methodical research to point to anything super conclusive. If we wanted a
dystopia where job aptitude was determined by DNA, for example, we would need
hundreds of studies and conclusive evidence that some genetic data indicates a
very good match and not just a hunch. That research has to come from
somewhere, continually be reproduced, and undergo the scientific process.
That's all stuff that has to be paid for, which is something not a lot of
people are willing to do.

> why would ANYONE in their right mind give their DNA to a company in Silicon
> Valley that is explicitely using Google as a model for Data privacy ?

It's more of a curiosity thing. I get a more complete view of myself, and we
potentially help advance research in medicine and diseases. It's symbiotic.

~~~
krageon
For stuff like this to be used by most people (that is to say dystopically and
objectively wrong, like in a hiring process) we definitely don't need any sort
of rigorous research. They already have those Myers-Briggs tests that have no
actual basis in reality, not to mention the kinds of hoops you jump through to
get your CV read that make no sense. The trouble is not (as far as I'm
concerned) that this information will be used by competent, levelheaded
scientists. The trouble is that everyone else might start using it.

------
TrainedMonkey
Make no mistake about what is happening here. GSK is buying access to all of
the genetic data that 23andMe has. This is why I am wary to use any 23andMe
type of service.

"The partners plan to use 23andMe’s data to jointly discover drug targets."

They will claim all kinds of protections of course, but it is only a matter of
time until genetic data starts being resold.

~~~
mcculley
I don't understand these concerns. I have published my data from 23andMe
([https://enki.org/2017/10/17/publishing-my-
genome/](https://enki.org/2017/10/17/publishing-my-genome/))
([https://github.com/mcculley/genes-genes](https://github.com/mcculley/genes-
genes)). Can you share what you think the bad outcomes would be? What am I
missing?

Edit: As people bring up the insurance risk, yes I did consider that and
mention it in my post. I am personally not concerned about it and think the
advantages outweigh the risk. Besides, I think insurances companies are going
to have all the data soon anyway. If every time I get a blood test, they have
a chance to capture my DNA, how can I stop them?

~~~
nradov
In the USA the Genetic Information Nondiscrimination Act of 2008 explicitly
prohibits discrimination on the basis of genetic information with respect to
health insurance and employment. No one in politically powerful positions has
seriously advocated for repealing the law. The insurance companies don't even
dislike it because it creates a level playing field; since the market is
competitive, even if they were allowed to price health insurance based on
genetic risk factors it wouldn't necessarily allow them to earn higher
profits.

[https://www.eeoc.gov/laws/statutes/gina.cfm](https://www.eeoc.gov/laws/statutes/gina.cfm)

~~~
sk5t
This is true for health insurance; not so for life insurance.

~~~
guntars
What’s wrong with a life insurance company getting a more accurate probability
of me dying from some rare disease? Maybe my rates should be raised if there’s
a higher risk of me kicking the bucket. This works both ways too - my DNA can
reveal that I will likely live a long premium-paying life. Insurance companies
make money by being accurate, not by under or overestimating the risks. If DNA
helps them be more accurate, good, maybe you can receive some of that value
from improved efficiency.

~~~
sk5t
Well, shucks, why not apply the exact same argument to health insurance as
well? Or even auto insurance?

While adverse selection is undeniably a tricky problem, the underlying raison
d'etre is pooled risk, to help individuals and families mitigate catastrophic
losses. Maybe you're all right with the prospect of future analyses condemning
to uninsurability folks with rare combinations of alleles that turn out to be
strongly deleterious. To me, this seems like breaking the regulated semi-
statis between insurers and insureds, and like breaking the social contract
more generally.

~~~
mcculley
If you are referring to the situation in the United States, where health care
is managed mostly by private health insurance, it is already a terrible social
contract.

The whole system is going to have to adapt to more information on individuals
being available.

------
jryan49
I see a lot of people making claims about 23andme that haven't used the
product, and I just wanted to inform people that in the contract you sign with
them, they only share your data if you opt-in to it. They make this all very
clear. You can also have them discard your sample and delete your info if you
haven't opt-ed in to the research program.

Now trusting that 23andme is actually abiding by these rules is a different
conversation.

~~~
joering2
Have you EVEN read the title??

They are not sharing this information with private entity aka. opt-in/out.
They made partnership research & development agreement in with GSK with invest
over $300MM. 23and me is not sharing our data outside their fences BUT this
agreement will let them bring GSK into their playground and do all sorts of
stuff with your DNA.

Worst case they will just buy the whole 23andMe as a company and once they own
it, still your data technically haven't been opted-in/out anywhere, but Glaxo
will do whatever they pleased with it :)

~~~
jryan49
It was made quite clear in the agreement that they cannot use data for
research if you opt-out, even inside their own company.

So you're saying any agreement someone has already made with 23andme in
regards to their data usage has become null and void because of this
investment? And would become if they were bought by another company?

~~~
infodroid
It doesnt really matter whether you opted in or out. In the end, all that
matters is whether the projected profits from abusing your data exceed the
projected legal costs of doing do.

------
aaavl2821
23andme has made a pretty impressive recovery after the FDA issues a few years
ago, although i think the jury is still out on how useful their data will be
for drug discovery. I think they mostly have genotype data rather than WES,
and i think their clinical data is all patient reported? The value of their
engaged audience seems clearer, especially if it can help enroll clinical
trials faster

~~~
randcraw
It may be that GSK isn't really interested in the existing 23&me product line,
but wants their name recognition and infrastructure. 23 is as close as anyone
to delivering a full GWAIS product to the public, which this partnership only
enhances. Combined with large capacity cheap deep sequencing by someone like
BGI, this partnership would be ideal for GSK to add in-house infrastructure to
do a LOT of GWAIS for all kinds of drug target ID efforts or clinical patient
stratification.

Maybe GSK has decided to target patients very precisely as standard practice
in all future drug trials. This makes a lot of sense if you want a new drug to
maximize efficacy or minimize toxicity by cherry picking your high responders
and low intoxicants, thereby easily avoiding all folks who don't benefit from
it, even if no-go patients are in the majority. But it also assumes such
cherry labels will be available to physicians and insurers soon, presumably as
de rigeur medical practice for the general public. Streamlining a product like
23's might make this initiative fly economically.

Done early in a drug trial, like phase II, you might be able to use deep
genome data to tune up or rescue a new drug that looks promising but not quite
promising enough to continue to phase III. Deep genomic analysis is a very
promising way to stratify patients who will benefit from those who won't.

This looks to me like GSK has just bought into GWAIS in a big way for
thousands or more patients, esp in clinical trials. This partnership can only
help both companies, since I don't see a major pharma ever trying to take over
23's existing boutique geek navel-gazer business.

~~~
aaavl2821
Yeah I agree that 23andme name recognition and brand is valuable and maybe
best in class for engagement of patients with genomic data. So for clinical
trial recruitment and marketing that would help.

I'm less convinced of the value of 23 and me data in drug discovery. It could
be quite useful but is not best in class. The regeneron genetics center is a
much better approach imo -- sequencing data vs genotyping, access to robust
medical data, partnerships with leading medical institutions to get patients
and data, and a targeted biology driven strategy that reduces the cost of
getting a signal. As far as cost per good potential target, 23and me is
probably an order of magnitude or more behind

Not sure how 23 and me would help GSK analyze genetic subpopulations -- GSK
could sequence patients just fine on their own without 23and me and get more
robust data than 23 and me genotype data. For biomarker discovery once you
have a candidate and are moving into clinical studies there are probably much
better targeted solutions than 23 andme

Value of 23 and me is 1) brand and 2) data on large number of pts. 2) helps
with finding genetic markers with low effect size which isn't really helpful
for drug discovery and also finding rare variants with large effect, which is
important, but there are better / cheaper ways of doing that (i.e. regeneron)

------
throwaway0255
I find it seriously scary how 23andMe markets itself.

Externally, they're a family company helping you understand your family
history and equipping you to anticipate health problems so you can prepare for
them.

Internally, in presentations to venture capitalists and in job interviews with
engineers like me, the picture is quite different. They're building a genetic
database and plotting world domination from a thousand different angles that
most people could never have even imagined.

This stuff is straight out of a dystopian sci-fi novel.

23andMe is very similar to Google in this regard. We never imagined Google
would have so much access to data, we never thought of the consequences. Now
Google wields an absolutely unfathomable level of power over everyone in the
world, and all anybody can really do is trust them not to abuse it.

And also trust that all future generations and governments that inherit Google
will never abuse it.

23andMe is one of those companies, but we aren't just talking about your
searches and communications, we're talking about genetics and humanity and
life itself on a very fundamental level.

The ethical and moral dilemmas haven't been brought to light yet in a
meaningful way, but it's inevitable, and they're some seriously next-level
moral dilemmas. Even for Silicon Valley.

~~~
kough
Would you elaborate on these nebulous plans for world domination?

~~~
kondro
[https://en.wikipedia.org/wiki/Gattaca](https://en.wikipedia.org/wiki/Gattaca)

------
citochrome
According to the National Institute of Health, Many drugs that are currently
available are “one size fits all,” but they don't work the same way for
everyone. It can be difficult to predict who will benefit from a medication,
who will not respond at all, and who will experience negative side effects
(called adverse drug reactions). Adverse drug reactions are a significant
cause of hospitalizations and deaths in the United States. With the knowledge
gained from the Human Genome Project, researchers are learning how inherited
differences in genes affect the body’s response to medications. These genetic
differences will be used to predict whether a medication will be effective for
a particular person and to help prevent adverse drug reactions.

------
doke01
How can I get a mapping of my genetic data where no one but me gets the
results?

~~~
cncrnd
I would like to know this as well. Does genome sequencing through providers
like Dante Labs guarantee that the data is not stores and/or shared? Are some
providers better about this than others, and if so which ones?

Also, once you have the data, are there tools to analyze your sequencing
without resorting to a web service? I don't mind setting up instances or a
cluster for this purpose.

I am thinking that if genome analysis keeps improving in the insights it can
provide, we could get to a point where some outcomes are predicted with near
certainty. This data would be worth...infinite amounts to insurance companies.

------
ourmandave
The state that 23&me is incorporated in needs to pass a law pronto that says
your dna belongs to you (despite any ToS).

Something about affiliates (and companies buying their way in) can't use your
data without express written permission.

Probably want to call the European Union on how to get the wording right and
not watered down by lobbyists.

------
Friedduck
I personally wouldn’t use their services for fear insurance companies obtain
the data. Not just now but at any point in your life (through bankruptcy,
change of ownership , etc.)

~~~
barking
The genetically 'unhealthy' will flock for insurance which will increase
premia and discourage the genetically 'healthy' from doing so. You cannot run
a commercially viable life insurance in a situation where there isn't
'ultimate good faith'. One way or another testing will become compulsory for
insurance.

------
bertil
Is anyone able to assess the quality of information security at GSK? I would
expect reasonably protective InfoSec from 23&Me because of their close ties to
Google, but GSK feels like a company too large to care, and without enough
hackers at the top to be worried.

I was taken aback by 23&Me’s anti-deletion contract, but with good security, I
only have them to fear. If someone less scrupulous can access it, then I
depend on their own security and that cascade tends to end up on
haveibeenpwned.

~~~
paxy
They already deal with HIPAA compliance, so that's some reassurance.

------
amelius
These are the perfect kind of studies to be performed by universities. Sad to
see the role of academia declining, and the corporate world taking over.

------
azujus
It’s sad that you can no longer get your genetic health info in Europe from
23andMe, but does this mean GSK will only have access to American info?

~~~
stochastic_monk
I expect the paperwork you sign explicitly gives them unlimited rights to your
data.

~~~
robbiemitchell
Related:
[https://news.ycombinator.com/item?id=17611256](https://news.ycombinator.com/item?id=17611256)

------
yters
It's interesting that the ads target elderly people. It takes a relatively
smaller number of elder customers to get at least partial DNA sequences for a
larger swath of the population.

My personal conspiracy theory is all these biometric recognition (such as
face) and DNA sequencing services are serving to compile a vast human
identification database. With all the Intagraming, live streaming, voice
listeners, etc. it becomes much easier to have mass surveillance. Someone is
wanted by the FBI? Well, maybe he'll show up in a friend's daughter's
Instagram selfie, or random tourist snapping pix, or Alexa listening into his
friend's home. No more need for painstaking installation of covert
surveillance to get the perp. Furthermore, with access and analysis of
someone's online posts, this opens up the possibility to detect future crime.
I bet there is big government money now for startups that can correlate a
person across all these data sources.

Plus, this doesn't have to be in the government's hands. Dark web sellers have
access to all this and more with all the data breaches. Such data can be used
to compile lucrative targets for blackmailing or kidnapping, along with a
pattern of life to make them easy to pick up.

------
amelius
Has any medical condition been solved through genotyping (as done by 23andme)
yet?

~~~
searine
23andMe as done several dozen publication performing GWAS using the genetic
data combined with questionnaire data.

This type of study aims to link symptoms with genetic cause. They have
actually made a pretty significant impact in genetics research. They list
their publciations here
[https://www.23andme.com/publications/](https://www.23andme.com/publications/)

~~~
tormeh
Oh man that's very cool. I'm kind of a fan of 23andMe now. A bargain for GSK,
I'd imagine.

------
pwaai
This is an attempt to catolog every human being on this planet for
surveillance.

I'm sure you know how an ex-cop turned out to be the infamous golden state
killer.

While it's wonderful that these cold cases are now being solved, it also
raises a strong privacy issue and also moral one.

If criminals know they will be caught eventually thanks to genealogy and DNA
cataloging, wouldn't this drive them to get rid of the DNA altogether and
escalate their crime?

~~~
csallen
In response to your final sentence, making it so criminals have to work harder
to get caught is never a bad thing. Consider the alternative.

