
23andMe Is Terrifying, But Not for the Reasons the FDA Thinks - hepha1979
http://www.scientificamerican.com/article.cfm?id=23andme-is-terrifying-but-not-for-reasons-fda
======
gojomo
If my fear was that an organization holding genetic data was going to break
policies and law against my interests, I'd be at least as concerned about the
State of California (and other states). Every state (by federal law since
1963) screens almost every newborn baby, via a blood test, for genetic
diseases:

[http://articles.latimes.com/2013/jul/19/opinion/la-oe-
timmer...](http://articles.latimes.com/2013/jul/19/opinion/la-oe-timmermans-
infant-genetic-screening-20130719)

California retains the residual blood spots for followup studies, apparently
indefinitely – see the section "Storage and Use of Dried Blood Spots":

[http://www.babysfirsttest.org/newborn-
screening/states/calif...](http://www.babysfirsttest.org/newborn-
screening/states/california#second-section)

California currently screens for 79 disorders:

[http://www.cdph.ca.gov/programs/nbs/Documents/NBS-
DisordersD...](http://www.cdph.ca.gov/programs/nbs/Documents/NBS-
DisordersDetectable011312.pdf)

And, results lookup long afterward by disorder is possible, since there's a
routine, by-email procedure for checking the sickle-cell status of NCAA
athletes:

[http://www.cdph.ca.gov/programs/nbs/Pages/NBSFAQTraitAthlete...](http://www.cdph.ca.gov/programs/nbs/Pages/NBSFAQTraitAthletes.aspx)

The policies for the data and the retained sample are described by the
'babysfirsttest' site above as allowing use "for medical intervention,
counseling or specific research projects which the California Board of Health
approves" and "anonymous research studies". Those sound about equivalent to
the 23andMe policy... and at a similar risk of reinterpretation or rule-
bending if organizational priorities or technology change.

~~~
Sheepshow
Look I know that much of HN has a libertarian and pro-corporation bias. But, I
think the article is pretty specific about the profit motive being cause for
concern.

The California Board of Health reports, however indirectly, to the taxpayers.
This accountability, however insignificant you may perceive it, is simply
absent from 23andMe.

To summarize your comparison:

\- 23andMe collects genomes to please their VC and Wall Street investors.

\- The CA government collects genomes to please the taxpayers.

Be honest, and forget your bank account: who do you really trust more?

~~~
gojomo
I do trust the profit motive of a small company, bound by various contracts
and laws, public perception, and their own need for future customers to
voluntarily opt-in, moreso than the state's shifting policies, pandering to
the different fears of various eras.

Even where the profit motive can lead to abuses, those abuses pale in
comparison to the history of even very good governments. California is one of
the most accountable governments in the world, but in the memory of its living
residents has imposed both forced internment of its citizens by their
ethnicity (WW2) and forced sterilization (until 1963).

What future crime or health scares could lead to the repurposing of this
broadly-collected state data? (It's quite hard to opt-out of this collection,
whereas it's costly to opt-in to 23andMe's program.) And if state-repurposing
happens, those who implement the change, perhaps including for-profit
companies in partnership with the state, can be insulated from accountability,
because when the state decides to do it, it is 'legal'.

Perhaps you assign those scenarios much lower probability than the more common
and mundane privacy abuses of profit-seeking sleazeballs. OK, fine. Still, the
magnitude of damage the state can do, with its powers of compulsion and
confiscation, is much larger. Fewer events, yes, but much worse when they
happen.

So if you're 'terrified' by the chance 23andMe might misuse voluntarily-
offered genetic materials, against their own policies, state law, and customer
preferences, you ought to reserve at least some fear as well for the danger
from the much larger cache of genetic data, collected without explicit
consent, already in the hands of an institution that – when it occasionally
misfires – does more damage than any single company can.

~~~
logjam
Really. You trust "profit motives". How adorable. But yet you couldn't find
space above to relate for us all the charmingly ethical conduct of companies
"bound by various contracts and laws, public perception, and their own needs
for future customers"...companies like Union Carbide, Monsanto, Enron, Kerr-
McGee, British Petroleum, Halliburton, FlowTex, Bayer etc etc ad infinitum.

No thanks. 23andMe is yet another group of shady, for-profit slimeballs making
money off people's fears, called out by the FDA for the same kind of arrogant
adolescent libertarian horseshit that gave us Vioxx.

And yeah, most of us actually prefer to deal with the "state's shifting
policies" \- you remember...the policies we vote on.

~~~
mindcrime
Right, and the State has never violated our trust either.

Nobody should trust any corporation OR government agency blindly. Duh.

But to suggest that corporations are somehow inherently less trustworthy that
the government is just... silly. And unsubstantiated.

------
lukifer
I was excited about 23andMe, but I decided against it solely for this reason.
You can change your passwords, but you can't change your genetics. Whether
it's the mundane and real concern of invalidated health insurance claims, or
the far-flung hypothetical concerns (future clandestine organizations
developing individually targeted assassination viruses), giving away one's
genetic code involves too much risk and moral hazard.

(It's a shame, too. I badly want my full ATGC sequence to be a zip file on my
hard drive.)

~~~
alsocasey
Clarification: while 23andMe could fully sequence your genome using the sample
you provide (which I assume they bank...), that's not what they actually do
currently - your DNA is instead chopped up into short segments and run on an
Illumina SNP genotyping microarray (to obtain variant calls at thousands of
genomic loci found to be relevant in various association studies).

Your DNA is never actually fully sequenced, because that is _currently_ too
cost prohibitive...

~~~
001sky
_Your DNA is never actually fully sequenced, because that is currently too
cost prohibitive_

Q> Does anyone know the actual/current pricepoint for this?

~~~
whyenot
Currently about $3,000 and falling.

See
[http://www.genome.gov/images/content/cost_per_genome_apr.jpg](http://www.genome.gov/images/content/cost_per_genome_apr.jpg)

~~~
mbreese
Not quite... that it the _raw_ sequencing cost and doesn't cover the prep work
required, or likely the computational resources required for processing. It is
actually almost to the point where the computational costs are more than the
costs of raw sequencing.

And, for the places where you can get a $3K genome sequenced, it isn't likely
that they will service outside (non-research) customers.

------
chmars
'Sound paranoid? Consider the case of Google. (One of the founders of 23andMe,
Anne Wojcicki, is presently married to Sergei Brin, the founder of Google.)'

That's where the article lost me …

~~~
mcphilip
Sure, that was an awkward transition, but you gave up too early. One paragraph
later justifies this:

"What the search engine is to Google, the Personal Genome Service is to
23andMe. The company is not exactly hiding its ambitions. “The long game here
is not to make money selling kits, although the kits are essential to get the
base level data,” Patrick Chung, a 23andMe board member, told FastCompany last
month. “Once you have the data, [the company] does actually become the Google
of personalized health care.”

~~~
barista
The author is trying to use that relationship to stress a point which stands
no matter whether the founder is related to Google founder or not. Take that
piece of information out and the point that the author is making still stands.
Google has showed us that by luring people to share their private information,
it is possible to sell your users eventually. Now you don't have to be related
to a Google founder to learn and use that business model. If there was any
other company that followed the same practice and didn't explicitly allow me
to own my data and delete it from their databases I'd be worried about that
company as well. No matter whether they are related to Google or not. The
relationship to Google just make me extra worried because of the history of
Google.

~~~
tptacek
The point has nothing to do with the relationship between the companies. Like
the commenter upthread said, it was a clumsy way to transition into the topic.
23AM could be a Microsoft spin-off, or a Bloomberg company, or a Koch Brothers
company: the same points would stand.

The reason Google matters is that it demonstrated that the business model of
hoarding and capitalizing on personal information works. The rest of the
article spells out ways in which 23AM is already capitalizing on its stored
information.

~~~
smsm42
>>> it demonstrated that the business model of hoarding and capitalizing on
personal information works

Marketing companies and spammers are using this model all the time. AFAIK most
of Google's income is from ads which use very little of personal information
(yes, I know about targeted ads but I have a feeling marginal utility of those
vs. just having ads on Google which everybody uses is not that high).

------
parallax7d
Recently watched Gattaca. Found it interesting how in that world, DNA
profiling for job placement was illegal, but because the technology was so
widespread and available, it was easy to circumvent the regulations without
getting caught. Just shake someone's hand or take a drug test, and they have
your entire genome.

------
smsm42
The article failed to terrify me. Yes, genetic testing is coming, and yes,
very soon genetic information will be as easily accessible as any other
information about the person. The governments already have large DNA
databases, and those will expand. There's no "portal" that 23&me is luring us
through - there's the future towards which we move inevitably, and since the
technology exists, it will be used. Out of all possible usages of this
technology, the one 23&me presents seems to be pretty benign. I'd rather be
afraid of the government of which I have very little control and which knows
or can know pretty much everything about me than of the company that can be
shut down by any FDA bureaucrat.

------
boon
Does anyone know if 23andMe would be restricted from disclosing your info
under HIPAA?

~~~
ams6110
If they don't think FDA rules apply to them, why would they think HIPAA rules
do?

~~~
zmmmmm
HIPAA and FDA are completely independent. HIPAA is much broader and at the
same time much less cumbersome to comply with. I'd be extremely surprised if
they weren't being HIPAA compliant, not just because of the law but because
HIPAA doesn't ask much that they wouldn't be insane not to do anyway.

------
pstuart
I know I have the bright light/sneezing mutation :-)

Would this be a concern about privacy exist if there was no way your genetic
profile could be used against you? If you couldn't be discriminated in any way
on that basis, what else would need to be hidden?

I'm not asking rhetorically -- what else do we have to hide about our genes?

~~~
cdavid
It is highly disruptive in terms of insurance. Insurance can only work if many
people pay for the few who actually need the insurance. The best way for
insurance companies to increase profits is to get rid of the people who
actually need them from their pool: if they can have access to a good set of
indicators to remove people with high incidence of diabete, kidney failure or
cancer, they will use it. And once people understand that, nobody will use
insurance anymore.

Health may become another kind of risks you can't insure against anymore, like
divorce or unemployment.

~~~
NoPiece
That was true in the past, but is irrelevant now that insurance companies
can't refuse to insure you, or even charge you more for pre-existing
conditions.

~~~
joosters
Not true at all. If you know you are at higher risk thanks to your personal
genetic test, you are more likely to buy yourself good insurance coverage.

1) More high risk customers buying the insurance concentrates the 'pool' of
insured risks...

2) ...leading to more payouts

3) ...leading to higher insurance

4) ...leading to those without the risks opting to take cheaper, lower level
coverage

5) ...leading to more concentrated risk in the pool of insured people in the
good coverage

6) ...and back to step 2. The insurance fails, or becomes too high a cost to
be worthwhile for anyone.

~~~
NoPiece
I agree with your points, but the result will probably just be higher rates,
not failure. You can see it start to happen already with the early
implementation of the ACA. However, that that isn't what I was talking about,
and it doesn't support the parents claim that, "they [insurance companies] can
have access to a good set of indicators to remove people with high incidence
of diabete, kidney failure or cancer, they will use it."

My point was, no, insurance companies can't use the data, even if they had
access to the it, which they won't.

~~~
joosters
I was wittering on about this earlier today:
[https://news.ycombinator.com/item?id=6807778](https://news.ycombinator.com/item?id=6807778)
and other comments in that older story - but my brief summary is: if _you_
know your genetic data, you can then make insurance policy choices based upon
it without telling the insurers. But when enough people do this collectively,
the insurance market will (possibly) fail or be forced split offerings into
various levels of cover. Customers then self-select and the end result is the
same as if the insurers knew the data in the first place.

~~~
NoPiece
At this point do you really need the genetic data to get the same effect? I
throw out my back, I upgrade my insurance, then I get the surgery. The doctor
says I have 90% blockage in my arteries,I upgrade insurance, then I get the
bypass. It seems like genetic data will have less influence than people making
changes based on empirical observations of their health.

~~~
joosters
I don't know specifics about the USA, but certainly in the UK, private
healthcare insurance works like most other forms of insurance, i.e. Pre-
existing conditions or other relevant information is either not covered or
must be declared and will be used to adjust premiums.

No car breakdown insurance lets you take out a policy to cover the vehicle
after it has already broken down...

------
tokenadult
This commentary points out, "But as the FDA frets about the accuracy of
23andMe’s tests, it is missing their true function, and consequently the
agency has no clue about the real dangers they pose. The Personal Genome
Service isn’t primarily intended to be a medical device. It is a mechanism
meant to be a front end for a massive information-gathering operation against
an unwitting public." Yes. That was reported in a _Fast Company_ magazine
profile of 23andMe[1] submitted here to HN 44 days ago, with a lot of
discussion.[2] The basic problem that 23andMe faces is a business model that
by its own acknowledgement really doesn't provide much benefit to the
consumers who are paying to have their DNA SNP-sequenced and their personal
health history data collected for 23andMe's use.

[1] [http://www.fastcompany.com/3018598/for-99-this-ceo-can-
tell-...](http://www.fastcompany.com/3018598/for-99-this-ceo-can-tell-you-
what-might-kill-you-inside-23andme-founder-anne-wojcickis-dna-r)

[2]
[https://news.ycombinator.com/item?id=6549600](https://news.ycombinator.com/item?id=6549600)

------
gvb
I wonder what 23andMe would find if I submitted my dog's spit. Might be worth
teaching him to spit.

~~~
gnarbarian
I considered getting sheep spit and sending it in claiming that I was welsh.

------
sitharus
I signed up for 23andMe, got the results, had a brief chat to my GP. She said
it's interesting, but only useful if you're looking for the source of a
problem.

Even my health insurance doesn't care, they only worry about diagnosed
conditions. Plus any pre-exisiting conditions are covered after three years.

On the other hand, the country where I live has universal healthcare.

~~~
DennisP
In the U.S., denying insurance or raising rates based on pre-existing
conditions will be illegal as of Jan. 1. Doing these things based on genetics
has been illegal for several years now.

------
thret
I think this article is a little short sighted. DNA profiling may be bad for
some people in certain situations (health insurance), but the long term
effects, for our species as a whole? I don't have a problem sacrificing my
individual genetic privacy if it brings us closer to a Gattaca style utopia.

------
rwmj
Can someone summarise why the FDA have any say in genetic testing? It's not as
if they are selling a drug or other substance that might be incorrectly made
or labelled. Presumably spitting into a vial can't cause harm.

~~~
booyaa00
If you're going to market something that can allegedly test and diagnose
illnesses, it sure as hell should be tested and regulated.

I hope 23andme is shutdown.

~~~
mynewwork
I don't understand the anger and animosity at 23andme I've seen on HN lately.
Maybe I'm not understanding something the way you are.

My understanding is they sequence some of your dna, and then link to various
publicly available studies to show users "This paper showed this mutation
correlates with this disease".

Is that not a correct description of their service? Why do you want them shut
down?

~~~
booyaa00
The problem is, most people aren't trained doctors. They will have no idea how
to interpret the results. They will likely go waste their own doctors time
worrying about everything. 23andme is preying on some peoples fears, and
turning them into hypercondriacs.

The absolute vast majority of people will die from heart disease or cancer.
What is the point of paying money to find that out?

Obviously there's also the privacy aspect as well - trusting your DNA to some
private company who wants to make profit.

If you have a symptom, or family history of some disease, go see a doctor.
That's kinda what they're there for. And they train for years in order that
they can interpret results correctly.

------
vitno
There is a lot of unwarranted 23andMe hate going on here. Not only do they
offer at the end of sign up to delete/remove your genetic sample, you can also
inform them you want to do this at any time.

DNA is extremely stable at low temperatures so they can periodically re-assay
the sample and give you more information on SNPs they have found important or
you can opt-out and just get the one sample.

------
ris
With 23andMe I'm waiting for the entertaining family scandals to happen when
people suddenly discover they have cousins they didn't know about. It's going
to be a cataclysmic mass phenomenon and there's nothing anyone can do about
it.

------
brent_noorda
I hope the FDA forces 23andMe to take back their results that I'm getting
Alzheimer's. Unless they already have. I forget.

------
namuol
Pretty sure we need laws that protect this information from predators.

