
Why I've Decided to Avoid US Genetic Testing - bencollier49
http://www.bencollier.info/content/why-ive-decided-avoid-us-genetic-testing
======
jballanc
Two things have been universally true the more we learn about the human
genome:

1.) It's startling just _how much_ is determined by genetics

2.) It's startling just _how little_ is determined by genetics

How is it that both are true? We are constantly learning that genetics is a
strong determining factor in a number of seemingly complex traits, everything
from the way you comb your hair to your food preferences and more. A recent
study found a single genetic locus in mice can entirely alter the manner in
which they build tunnels!

But these are all _seemingly_ complex behaviors. We are often surprised by the
genetic control over such things because we can analyze these behaviors and
break them down into discrete steps. To think that all of these steps, in
combination, are controlled by DNA is frankly quite disturbing. It makes you
wonder just how much can be determined by genetics. It might even make you
question who you give access to your, or your offspring's, genetic
information.

You know what is an even stronger determining factor of overall life quality,
though? The Marshmallow Test
([http://en.wikipedia.org/wiki/Stanford_marshmallow_experiment](http://en.wikipedia.org/wiki/Stanford_marshmallow_experiment)).

As humans, our key defining characteristic is our ability for higher
cognition. While it is true that genetics provides the pallet from which your
brain paints its cognitive abilities, the reality is that your children's
brains will continue growing, developing, and changing for years to come. As
the parent of identical twins, I expect you will get the chance to experience
first hand just how much environmental factors can cause cognitive development
to diverge, given the same starting genetic material.

So, yes, if the NSA got a hold of your genetic information, they might be able
to determine that they should serve you steak, and not a salad, at dinner when
they are attempting to recruit you to become a double agent, but they
certainly won't be able to predict how loyal, hard working, diligent, or
resourceful you would be in the position.

~~~
dbecker
The fact that the Marshmallow Test predicts life quality doesn't mean that
genetics do not. The marshmallow test may (or may not) simply reflect
underlying traits that are genetically determined.

~~~
jballanc
I can't find the relevant research articles at the moment, but there is
evidence that success on the marshmallow test can be improved with training
(also referenced at the end of this article:
[http://www.wired.com/wiredscience/2011/09/the-willpower-
circ...](http://www.wired.com/wiredscience/2011/09/the-willpower-circuit/) )

~~~
otoburb
The Marshmellow test was revisited[1] and the study[2] found that behavioural
and circumstantial cues had a larger influence than self-control.

[1]
[http://www.washingtonpost.com/blogs/wonkblog/wp/2012/10/13/t...](http://www.washingtonpost.com/blogs/wonkblog/wp/2012/10/13/the-
marshmallow-test-revisited/)

[2]
[http://www.bcs.rochester.edu/people/ckidd/papers/KiddPalmeri...](http://www.bcs.rochester.edu/people/ckidd/papers/KiddPalmeriAslin2012_Cognition.pdf)

------
bencollier49
Hi all, OP here. You busted my box.

It seems to be working again now, but I've reposted the article on my
Neocities page in case there's another tidal wave of visits.

[http://bencollier.neocities.org/](http://bencollier.neocities.org/)

------
sjmulder
Is a UK company less likely to give your data away? I thought the UK
government was also in on the spying. Really, is there any company or
government that you can genuinely trust not to spy on you, or to hand over
your data?

~~~
objclxt
The UK has the world's _largest_ DNA database. The figures Wikipedia cites
suggests the UK has 10% of the population's DNA on file, whereas the US only
has 0.5%. In my opinion, British people (like me!) should be far _more_
worried about what's going on in their own backyard with regards to DNA
retention and processing by the state.

I don't even know why the state would _need_ to go through 23andme. You're
shedding your DNA everywhere you go. It's not hard to collect a sample.

~~~
300bps
>You're shedding your DNA everywhere you go. It's not hard to collect a
sample.

Interestingly, 23andme addresses this by requiring a quite large saliva
sample. The theory being that with such a large sample required you will not
be able to gather enough spit from someone surreptitiously to get their
genetic profile.

It took me about 10 minutes to generate enough spit to put into the test tube
to reach it to the marked fill level. It took longer because you're not
allowed to drink anything for a period of time before you collect the sample.

~~~
dfc
You think that some spook is going to follow you around to collect DNA and
then send it to 23aM? I think the parent commenter was probably under the
impression that if the government was going to surreptitiously acquire your
DNA they could probably find some testing facilities of their own.

~~~
dminor
No, they were merely stating that you can't easily test someone else's DNA
using 23aM, despite the fact that we're shedding DNA everywhere.

------
burningion
This is the struggle of the internet all over again.

We'll need to have personal genome sequencers, and control and protect the
flow of our genetic information, just like we need to control the flow of our
speech and sites visited.

Right now a company owns the rights to the genome marker which is responsible
for breast cancer.

[http://www.techdirt.com/articles/20130713/01171423788/myriad...](http://www.techdirt.com/articles/20130713/01171423788/myriad-
mocks-supreme-courts-ruling-gene-patents-sues-new-competitors-doing-breast-
cancer-tests.shtml)

This means nobody can check their genome for potential breast cancer without
paying this company a tax. Again, this is only data.

We will have genome marker piracy soon enough, where people will be exchanging
databases of genetic markers, and biopirates who help people bypass the power
structures that want to own the genome markers.

~~~
uncoder0
This was overturned in court.[1][2]

[1][http://bcaction.org/2013/06/13/breast-cancer-action-wins-
sco...](http://bcaction.org/2013/06/13/breast-cancer-action-wins-scotus-
overturns-human-gene-patents/?printerfriendly)

[2][http://www.aclu.org/womens-rights/supreme-court-
invalidates-...](http://www.aclu.org/womens-rights/supreme-court-invalidates-
patents-breast-and-ovarian-cancer-genes)

~~~
aheilbut
Sort of, but there are still numerous patents on BRCA testing that were not
part of the SCOTUS ruling, which Myriad is continuing to try to enforce:
[http://www.businessweek.com/news/2013-07-09/myriad-
genetics-...](http://www.businessweek.com/news/2013-07-09/myriad-genetics-
sues-ambry-to-halt-rival-breast-cancer-test-1)

There really need to be some kind of novel legal structures to cover this kind
of testing. There _do_ need to be incentives (temporary monopolies) for
companies to discover, develop and validate tests, because it is expensive and
takes a long time. On the other hand, there should be incentives to
disseminate useful tests as quickly as possible at a fair price, and there
shouldn't be undue restrictions on research. But it can't be a free-for-all
either.

------
conroe64
Ben, pat yourself on the back... you potentially thwarted a world renowned,
best-of-class spy agency from collecting invasive personal data from your very
lifeblood, your children. _This_ may be the difference between your kids being
ordinary nerds taking pictures of themselves hiking through a wildlife
sanctuary while uploading their location to foursquare and being falsely
implicated in a plot to overthrow the government and thrown into Guantanamo
Bay.

And thankfully, you didn't stop at merely declining getting your kids' DNA
tested, ignoring the peer pressure of all your cool yuppie friends who did so
with their kids. Instead, you blogged your decision, and thereby recording
your extreme intelligence and wit in a free permanent form for the masses to
consume and benefit from.

I salute you, sir. A freedom fighter to which we all should bow to.

~~~
3am
Hah! Thank you.

I pray to the FSM for this PRISM-induced group psychosis to end.

I agree the NSA overstepped their authority. But the idea that A) they would
want this information B) they wouldn't have trivially easy ways of otherwise
getting this information (ie a single hair) or C) that this information would
somehow be safer with a UK based firm are all _hilarious_.

~~~
dwaltrip
C is reasonable. Maybe if DNA gathering robots become cheap enough, and the
NSA starts scouring the world vacuuming up DNA for the database -- then B
_might_ be reasonable, but probably not. We are talking about broad
programmatic collection, not anything targeted. A is wrong... Clearly they
want whatever they can get their hands on (from washington post:
[http://bit.ly/11PFiH7](http://bit.ly/11PFiH7)).

The real argument is that the likelihood of this decision making a difference
in the life of his kids is very small. But from an ideological standpoint he
might not care. Maybe if that type of attitude became a wider trend, a
difference could be made? Who knows. I respect his decision though.

~~~
3am
I back to point A. The NSA doesn't want my stinking DNA. There's no actionable
intelligence from it, which is the "all" referred to in that silly WP link.
It's completely lunacy. The other two are moot points as a result, I just
though they were funny.

Jeez, even if they have it, who the hell cares beyond it beyond the the
principle of having my privacy invaded.

This thread is idiotic. HN quality has been just obliterated with the tin-foil
hat/NWO crowd. The stupid is just breathtaking.

~~~
bencollier49
Hi, OP here. Have to say I'm actually pretty tired of all the PRISM stuff too,
but this issue got me interested.

If someone were to get into a position of power, the knowledge that said
individual was likely to succumb to a neurodegenerative condition would be
pretty actionable intelligence. That sort of thing.

~~~
3am
Thanks for the reply!

I think you have the makings of a good point. I really don't think the NSA is
interested in this data. Now employers, insurance companies, or universities
might find it very interesting.

I think you had your heart in the right place, and largely agree with your
reasoning. I just blame different principals. And I would be more worried
about more mundane stuff, like having it be made parts of routine physicals,
than I would be about anything black hat.

EDIT: also, I was not referring to you with the, "This thread is idiotic. HN
quality has been just obliterated with the tin-foil hat/NWO crowd. The stupid
is just breathtaking." comment. That was directed towards to of the other
comments that are not members of what I would consider "reality".

------
conductor
Both USA and UK collect DNA data from the new-born children just after their
birth. Yes, the New World Order.

This surveillance and all.. They want everybody to be under total and
permanent control. We must stop it, while we can. Yes, adjust your priorities,
freedom is much more important than security.

~~~
eliasmacpherson
I know that's true about people detained at a police station in the UK[0], but
new borns? What database does their dna go in to?

[0]
[https://en.wikipedia.org/wiki/United_Kingdom_National_DNA_Da...](https://en.wikipedia.org/wiki/United_Kingdom_National_DNA_Database)

EDIT: correct me if I'm wrong, but it isn't mandatory either, which your
comment implies.

~~~
arethuza
Probably this one:

[http://newbornbloodspot.screening.nhs.uk/](http://newbornbloodspot.screening.nhs.uk/)

Mind you - it looks like a pretty sensible project, but I can see how people
might have privacy concerns about it.

~~~
eliasmacpherson
If you can't get them with insider trading like Naccio, radiation poisoning
like Litvinenko or cancer like Jobs, this could prove an effective option in
the future :P

[http://www.examiner.com/article/csi-fraud-fake-dna-
evidence](http://www.examiner.com/article/csi-fraud-fake-dna-evidence)

------
uncoder0
Do you believe it is hard to acquire someones DNA? Mammals shed DNA
constantly. If you are interesting enough to people who have enough power to
access PRISM you've already lost. I'm sure getting some of your DNA would be
trivial.

~~~
bencollier49
Hi, OP here. I guess the trick is not submitting DNA in a way which makes
collection and sifting scalable. Sending people out to collect DNA would be
expensive, so less likely to be used routinely.

~~~
uncoder0
Hey! Still pre-coffee so I'm glad my argument made some sense. Does this mean
participating in government run healthcare and blood donation breaks your
threat model?

~~~
bencollier49
Interesting question. Let's say I have a clearly defined threat model. I rate
the chances of an existing database being misused as higher than the chances
of a screening service which looks for one or two SNPs being secretly misused
to collect entire genomes. The number of health workers who'd have to collude
to operate the latter would be enormous, and it would leak like a sieve.

We're not dealing with the government from "1984" here, it's more like the one
from "Brazil" (the film, not the country!).

------
dnautics
1) the image of DNA in that picture has a huge artificial pyrene base pair in
the middle (array of four green hexagons canted about 10 degrees from the
horizontal plane). This would not be good for you if you had it in your DNA.

2) If you're thinking about edward snowden, I'm really not sure what you
expect to be "keeping safe" from the government. unlike digital information,
your DNA cannot be encrypted and you are sloughing it off everywhere you go.
If the government really wants to know something about your DNA, it is TRIVIAL
for them to do so. Perhaps being put into a database makes it one step easier,
but it's not entirely clear to me what they would use that data for, except
maybe, to try to poison you or something. Or, possible, pre-crime stuff. If
the US is doing that sort of stuff on a large enough scale that you should be
worried about them going through the effort of targetting you through your
DNA, then you've got more to worry about because in your case the rule of law
really means nothing, and there are easier, "more conventional" means for you
to be subjected to the long arm of the law than those threatened by your DNA
"secrets" being compromised.

~~~
dnautics
I should clarify: Trivial but expensive.

------
diydsp
This seems apropos considering the potential for genetic abuse... from /.

"Scientists Seek Biomarkers For Violence"
[http://science.slashdot.org/story/13/07/16/1531241/scientist...](http://science.slashdot.org/story/13/07/16/1531241/scientists-
seek-biomarkers-for-violence)

Note that this article is based on two scientists who lost their daughter in a
school shooting... implying that angry, emotionally-distraught smart people
could be a powerful force in bringing the New World Order down on us.

------
tokenadult
It took a while for me to get the fine submitted article here to load.
Submitting to HN must have slashdotted the author's site. Meanwhile, I read
all the comments here. Even Google's cache of the article took a long time to
load.

The author's concerns are largely about the privacy differences between a
company based in the United States and a company based in the UK. As comments
here and on the general issue of government surveillance over the past month
have pointed out, that is a distinction without much of a difference. If
networks don't have technical protocols that are completely proof against
third-party hacking, AND protected by data privacy rules respected by all
national governments, any data about you gathered by anyone might possibly be
read by anyone else. After all, United States diplomatic cables that were
classified and sent through supposedly secure channels are now readable by
anyone anywhere in the world who visits the Wikileaks website. And so on.
Without united effort by all countries and some considerable developments in
technical protocols, it is doubtful that any of us have privacy from any
would-be viewer--not from Al Qaeda, not from the Russian security agencies,
and not from anyone.

On the broader topic of what can be known about an individual from an
individual's genome, I'll share some links to some recent publications about
behavior genetics. Genomes are less revelatory than some researchers supposed
that they would be a few years ago. That doesn't stop individual genomes from
being very good identifiers of individuals, but it means that classifying
people by their genetically revealed propensity for one kind of behavior or
another is probably a fool's errand.

HERITABILITY FAQ

It is well known, on the one hand, that ALL human behavioral characteristics
are heritable. (It is an abuse of language to say "heritable" in this context,
but the abuse is conventional and standard in the field.) So we can agree with
the professional literature that your tendency to vote for one political party
rather than another is heritable. Your attribution of causes for human
differences (e.g., human differences in IQ) is also heritable. Your opinion
about regulation of the Internet is heritable. Everything about human behavior
is heritable.

Eric Turkheimer has recently been president of the Behavior Genetics
Association, and he has the very kind habit of posting most of his peer-
reviewed journal articles on his faculty website.

[http://people.virginia.edu/~ent3c/vita1_turkheimer.htm](http://people.virginia.edu/~ent3c/vita1_turkheimer.htm)

Lars Penke is another, younger researcher who posts most of his publications
on his personal website.

[http://www.larspenke.eu/en/publications/publications.html](http://www.larspenke.eu/en/publications/publications.html)

I have the pleasure of meeting many other researchers in human genetics just
about weekly during the school year at the University of Minnesota "journal
club" Psychology 8935: Readings in Behavioral Genetics and Individual
Differences Psychology. From those sources and other sources, I have learned
about current review articles on human behavior genetics that help dispel
misconceptions that are even commonplace among medically or scientifically
trained persons who aren't keeping up with current research.

An interesting review article,

Turkheimer, E. (2008, Spring). A better way to use twins for developmental
research. LIFE Newsletter, 2, 1-5

[http://people.virginia.edu/~ent3c/papers2/Articles%20for%20O...](http://people.virginia.edu/~ent3c/papers2/Articles%20for%20Online%20CV/Turkheimer%20\(2008\).pdf)

admits the disappointment of behavior genetics researchers.

"But back to the question: What does heritability mean? Almost everyone who
has ever thought about heritability has reached a commonsense intuition about
it: One way or another, heritability has to be some kind of index of how
genetic a trait is. That intuition explains why so many thousands of
heritability coefficients have been calculated over the years. Once the twin
registries have been assembled, it's easy and fun, like having a genoscope you
can point at one trait after another to take a reading of how genetic things
are. Height? Very genetic. Intelligence? Pretty genetic. Schizophrenia? That
looks pretty genetic too. Personality? Yep, that too. And over multiple
studies and traits the heritabilities go up and down, providing the basis for
nearly infinite Talmudic revisions of the grand theories of the heritability
of things, perfect grist for the wheels of social science.

"Unfortunately, that fundamental intuition is wrong. Heritability isn't an
index of how genetic a trait is. A great deal of time has been wasted in the
effort of measuring the heritability of traits in the false expectation that
somehow the genetic nature of psychological phenomena would be revealed. There
are many reasons for making this strong statement, but the most important of
them harkens back to the description of heritability as an effect size. An
effect size of the R2 family is a standardized estimate of the proportion of
the variance in one variable that is reduced when another variable is held
constant statistically. In this case it is an estimate of how much the
variance of a trait would be reduced if everyone were genetically identical.
With a moment's thought you can see that the answer to the question of how
much variance would be reduced if everyone was genetically identical depends
crucially on how genetically different everyone was in the first place."

Johnson, Wendy; Turkheimer, Eric; Gottesman, Irving I.; Bouchard Jr., Thomas
(2009). Beyond Heritability: Twin Studies in Behavioral Research. Current
Directions in Psychological Science, 18, 4, 217-220

[http://people.virginia.edu/~ent3c/papers2/Articles%20for%20O...](http://people.virginia.edu/~ent3c/papers2/Articles%20for%20Online%20CV/Johnson%20\(2009\).pdf)

is another interesting review article that includes the statement "Moreover,
even highly heritable traits can be strongly manipulated by the environment,
so heritability has little if anything to do with controllability. For
example, height is on the order of 90% heritable, yet North and South Koreans,
who come from the same genetic background, presently differ in average height
by a full 6 inches (Pak, 2004; Schwekendiek, 2008)."

The review article Johnson, W. (2010). Understanding the Genetics of
Intelligence: Can Height Help? Can Corn Oil?. Current Directions in
Psychological Science, 19(3), 177-182

[http://apsychoserver.psych.arizona.edu/JJBAReprints/PSYC621/...](http://apsychoserver.psych.arizona.edu/JJBAReprints/PSYC621/Johnson%20Current%20Directions%20Psych%20Science%202010%20\(G%20and%20E%20in%20IQ\).pdf)

looks at some famous genetic experiments to show how little is explained by
gene frequencies even in thoroughly studied populations defined by artificial
selection.

"Together, however, the developmental natures of GCA [general cognitive
ability] and height, the likely influences of gene-environment correlations
and interactions on their developmental processes, and the potential for
genetic background and environmental circumstances to release previously
unexpressed genetic variation suggest that very different combinations of
genes may produce identical IQs or heights or levels of any other
psychological trait. And the same genes may produce very different IQs and
heights against different genetic backgrounds and in different environmental
circumstances. This would be especially the case if height and GCA and other
psychological traits are only single facets of multifaceted traits actually
under more systematic genetic regulation, such as overall body size and
balance between processing capacity and stimulus reactivity. Genetic
influences on individual differences in psychological characteristics are real
and important but are unlikely to be straightforward and deterministic. We
will understand them best through investigation of their manifestation in
biological and social developmental processes."

Turkheimer, E. (2011). Genetics and human agency (Commentary on Dar-Nimrod &
Heine, 2011). Psychological Bulletin, 137, 825-828. DOI: 10.1037/a0024306

[http://people.virginia.edu/~ent3c/papers2/Articles%20for%20O...](http://people.virginia.edu/~ent3c/papers2/Articles%20for%20Online%20CV/Turkheimer_darnimrod%20comm%20\(2011\).pdf)

reemphasizes the point that a heritability calculation tells us nothing about
subject to environmental influences a human trait is. "That heritability
depends on the population in which it is measured is one of the most
frequently repeated caveats in the social sciences, but it is nevertheless
often forgotten in the breach. (For example, it is nearly meaningless for Dar-
Nimrod and Heine to note that 'heritability [of intelligence is] typically
estimated to range from .50 to .85' [p. 805]. The heritability of intelligence
isn’t anything, and even placing it in a range is misleading. Making a
numerical point estimate of the heritability of intelligence is akin to
saying, 'Social psychologists usually estimate the F ratio for the fundamental
attribution error to be between 2.0 and 4.0.') The observation that genotypic
variation accounts for 90% of the variation in height in the modern world
depends on the variability of genotype and environment relevant to height.
Among cloned animals with widely varying diets, body size is perfectly
environmental with heritability of 0; in genetically variable animals raised
in identical environments heritability is 1.0. This is no mere statistical
fine point: it means that the entire project of assessing how essentially
genetic traits are in terms of measured heritability coefficients is a fool’s
errand."

~~~
guelo
> not from Al Qaeda, not from the Russian security agencies, and not from
> anyone

That's a silly strawman. No one has the capability that the NSA has, lavishly
funded as it is by the world's wealthiest superpower. There is absolutely no
reason to fear Al-Qaeda getting into your data.

~~~
yuvadam
That's not the point. I believe OP is speaking of security by design (as
opposed to security by policy), such that no malicious/unauthorized user will
_ever_ have the ability to see the data, even if 100 years from now Al Qaeda
is the world's wealthiest superpower.

~~~
tokenadult
Exactly that. Once the beans are spilled, anybody can pick them up.

------
cdcox
I can't imagine a future or situation where the NSA would possibly want or
need this information. I could imagine US immigration or US health insurance
asking for this information if they decided to move to the US, but in both
cases, they just ask for the information before allowing you to use their
services.

This article is almost a parody.

~~~
frebdel
It's worth noting that the US has been tasking its diplomats to collect
biometric (including DNA) samples of foreign leaders:

[http://www.guardian.co.uk/world/us-embassy-cables-
documents/...](http://www.guardian.co.uk/world/us-embassy-cables-
documents/202678)

If massive databases containing DNA information could be as easily accessed as
facebook user data, why would the NSA not 'collect it all'?

~~~
brown9-2
How does a person's DNA help in fighting terrorism or any of the other things
that the NSA does?

It's not going to tell you who is exchanging information or plans like
Facebook messages would.

~~~
CamperBob2
See, for example, the bogus "vaccination campaign" conducted in Pakistan by
CIA operatives in an effort to locate family members of bin Laden and his
known associates.

For the government, the ends _always_ justify the means. It's part of the fun
of being totally unaccountable.

------
ig1
You don't have to give the real identity of the person whose sample you're
supplying, you're entirely free to give someone else cash to make the purchase
on your behalf.

~~~
bencollier49
Good point, although I guess at some point they can detect that and correct
for it. But yes, potentially I could still use the company I wanted and give
bogus info. They do seem very good.

Not sure they'd like me doing it. Or perhaps their real-id policy is just down
to legislation and they'd be happy to get the cash whatever.

~~~
ig1
You don't have to give bogus info, the person who makes the payment needs to
enter their real details for the payment to go through, but when you submit a
sample I believe that as long as you confirm on the agreement that you have
consent from the person whose saliva it is then you don't need to give their
actual identity.

------
quattrofan
Very thought provoking and not something I'd considered. My wife is keen on
some genetic testing and we had been looking at US based companies. Will think
again.

