
23andMe licenses its own drug compound to Spanish firm Almirall - theobon
https://www.bloomberg.com/news/articles/2020-01-09/23andme-licenses-drug-compound-to-spanish-drugmaker-almirall
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BitwiseFool
This is great. I had a 23andMe test done years ago and one of the reasons why
I chose to do it was because my genetic data might be helpful for others.

I personally don't feel like I 'own' my genetic code and I'm quite happy to
let scientists analyze it. However I understand while many people do not feel
the same way.

~~~
dpiers
I'm relatively paranoid when it comes to privacy and also did 23andMe for
similar reasons.

I stopped thinking of my DNA as a secret when I realized how impossible it is
to keep other people from having access to it. Once someone knows it, you
cannot change it like a password.

DNA is an anti-secret. You share it everywhere you go and cannot stop. It's no
more secret or personal than your shoe size or height.

~~~
stanmancan
My concern in these services is, at what point in the future does your DNA get
weaponized against you? When do you get declined for health insurance, or have
jacked up premiums, because the insurance company bought a report from 23andMe
that says you have a predisposition to _expensive disease_?

My DNA isn't a secret, but I don't yet feel comfortable voluntarily handing it
over to be indexed by a for profit company that has little to no regulation
over what they can do with it.

~~~
toomuchtodo
> When do you get declined for health insurance, or have jacked up premiums,
> because the insurance company bought a report from 23andMe that says you
> have a predisposition to expensive disease?

US federal law prohibits this [1].

[1]
[https://ghr.nlm.nih.gov/primer/testing/discrimination](https://ghr.nlm.nih.gov/primer/testing/discrimination)

~~~
awb
Now it does, but it might not be this way in the future. Health insurance
companies fought tooth and nail about covering pre-existing conditions. This
is just going 1-step prior.

They could easily frame this as "hey 80% of the population who are pretty
healthy -- do you like paying extra high rates for this small population of
people with a predisposition for really rare, complicated diseases? if we drop
this unfair law we could lower your rates by X%".

Not saying it's right or ethical, but that I wouldn't be shocked if healthcare
started lobbying hard to get this tweaked.

~~~
wahern
Laws against murder can change, too. So what?

The interesting thing about modern genetics is that it turns out _everybody_
has some elevated risk for some disease or condition, which means the vast
majority of people have an interest in prohibiting genetic discrimination.

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LinuxBender
Somewhat off topic: Has anyone yet made a device that is entirely self
contained and can do a basic analysis of DNA without sending or fetching data
from anywhere? In other words, 100% air-gapped and my DNA and data stay on the
portable device. If not, approx. how many years until such a device might
exist?

~~~
chrisamiller
Unfortunately, there still is no such thing as "basic" analysis of DNA. :)Ewan
Birney has a great quote about this:

Sequencing, analysing and interpreting genomes is ‘routine’ in the same way
the US Navy ‘routinely’ lands planes on aircraft carriers. It might happen
regularly by well trained crew with the right equipment but it is _not_ an
easy thing to do.
[https://twitter.com/ewanbirney/status/1040144488948281344](https://twitter.com/ewanbirney/status/1040144488948281344)

That said, an Oxford Nanopore sequencer + a laptop is probably the closest
thing to what you want.

~~~
LinuxBender
This is actually promising. Obviously my mental comparison is not appropriate,
but I recall diagnostic equipment for vehicles that cost $500k+ and took up a
half of a bay in the shop. Now I can do the same diagnostics with a hand-held
device that is $95. That was a 20 year gap. If the same evolution occurs with
genetic equipment, it will meet my needs. In 15 to 20 years, I want to acquire
a copy of Dr. Sinclairs work on the yamanaka factors and reversing cell age. I
will need equipment to see DNA, epigenetic methylation and more.

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Hasz
What a excellent, albeit strange, model. People pay you to analyze their
valuable info, which you then aggregate and use to develop a drug and sell to
others. It's almost exactly like trash -- people give you their valuable
commodity (pay you to take it, in some cases!), you put it in a pile and then
sell the mining rights down the line.

If my data is going to be used to develop drug royalties, I want a % cut. Not
a free test, certainly not a test that costs $100. I realize I will never get
it, but I can hope.

Drugs, when you analyze the successes, are unfathomably profitable. The R&D is
horrifically expensive, but the end product is immensely valuable. 23andMe is
in a bit of a race to pick all the easy fruit from the genetic tree to develop
into drugs. All the upside, a much easier R&D path compared to the
conventional "throw shit at the wall until it sticks" style.

~~~
Beefin
That makes zero sense, the effort is in deriving insights in producing
something tangible - drugs. That's like saying you want a cut from all of
Google's revenue because you use their search engine, or you want a cut from
any service because they use the analytics from your use to improve their
product.

~~~
Hasz
That's exactly what I'm saying. I recognize it's not practical, but that
doesn't mean I'm going to change the criterion -- it's also why I chose not to
upload data to 23andMe.

In Google and everyone else's case, I would argue it's a bit different. Google
remunerates me with the best search engine in the world, excellent free email,
etc. Other services improve the product, which I (generally) reap the benefits
of.

On the other hand, your genetics are what they are -- I don't believe 23andMe
is sending every participant a coupon for this new drug, although I might be
wrong. Instead, all you get is a small sample of the 600k SNPs available, some
shaky genetic inferences, and tabloid level ethnic data. You give up valuable
data with huge upside for analysis of questionable integrity and limited
actionability.

~~~
dahinds
23andme provides a service that improves as a result of our research program.
Many 23andMe reports are now based entirely on 23andMe research. There's room
to argue about the value of the services we provide, but I think the science
is pretty solid. And 23andMe research is generally very well regarded in the
scientific community; we've contributed to >100 peer reviewed publications and
have dozens of active academic collaborations. There's no other genetic
testing company with anything remotely comparable to our research program.
Actionability is a really hard problem but I'd absolutely stand behind the
integrity of what we do. In any case, no one is obligated to participate in
our research program.

~~~
Hasz
From the privacy policy, effective jan 2020.

From the Privacy Highlight:

"We will not share your data with any public databases "

From the full policy:

"We may share some or all of your Personal Information with other companies
under common ownership or control of 23andMe, which may include our
subsidiaries, our corporate parent, or any other subsidiaries owned by our
corporate parent in order to provide you better service and improve user
experience"

I'm no lawyer, but it seems like the key word is public. Considering 23andMe
reserves the right to share this data with its family of companies, and I'm
unable to opt-out, it seems like all research is not totally avoidable. I
won't comment any more about the validity of the science, it's not my field.
However, I couldn't find any data about the error rate of the tests, which is
surely non-zero. I'd love to know what SNPs they choose to evaluate, how they
collect the phenotype data (the most valuable part of all!), etc.

In short, consumers give up huge troves of info, and pay for the privilege of
doing so. What's more, the actual business model is turning this into drugs,
of which they receive nothing in return. Most people expect a fun way to see
they're 4% $ethnicity, not realizing the value in the data they freely give up
to a private company.

I am no fan.

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mrfusion
I’m not understanding how snp datasets created this drug?

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neonate
[http://archive.md/5Ypmm](http://archive.md/5Ypmm)

