
Reasons not to reveal your DNA - afshinmeh
https://internethealthreport.org/2019/23-reasons-not-to-reveal-your-dna/
======
robhunter
"8\. Anonymous sperm and egg donors could become a thing of the past."

As someone conceived with donor gametes who used Ancestry/23andme to find and
build a relationship with my biological father - this is a WONDERFUL thing.

Depriving people of their genetic history is a terrible byproduct of the
multi-billion-dollar fertility industry, and I personally know hundreds of
people that have been terribly hurt by the pain caused by anonymous donations.

Only thing to correct - anonymous donations very much now ARE a thing of the
past, not "could be." Any fertility clinic promising anonymity is knowingly
lying to prospective donors and/or recipient parents.

~~~
kodt
Aren't there concerns of the state going after doners to pay child support in
cases where the legal guardians have some hardship/separate etc?

Or should that just be "in the fine print" when you donate?

~~~
robhunter
No, absolutely not - there have been hundreds of thousands of people conceived
this way and not one documented case of child support when an actual fertility
clinic has been used to conceive.

~~~
SkyBelow
Laws with far more precedence than this have been changed by courts. Such a
change should come with a significant amount of forewarning, but given the
situation there isn't much one can do even with sufficient forewarning.

------
ve55
While this list isn't the best and some reasons are a bit silly, I'm happy to
see more content that helps inform regular users about the downsides of these
practices. Paying to give a company your DNA is absurd. As I stated on this
two weeks ago:

I will be waiting until I can analyze my DNA myself, without handing it over
to a company that is going to do whatever it wants to with it. We are not yet
able to fully appreciate how valuable DNA is, and yet everyone seems delighted
to pay companies to take it from them.

Perhaps they will be less delighted when they are convicted of a crime based
off of a false positive, have their DNA shared with Facebook to Improve Their
User Experience ™, or have their DNA made public after yet another security
breach where it is left on an unsecured server.

Remember that your DNA is very valuable, literally. Those who have noticed
recent progress in genomics should realize how valuable it would be to a
competent advertising company, allowing them to profile and predict users with
significantly higher personal accuracy, even if all they are doing is
performing basic GWASs ([https://en.wikipedia.org/wiki/Genome-
wide_association_study](https://en.wikipedia.org/wiki/Genome-
wide_association_study)).

~~~
breck
This is analogous to the 1800s when people disagreed over whether one should
let a camera take your photo. It’s an interesting debate. However, if
sequencing prices and mobility (see oxford nanopore) continue to advance at
current rates, in 30 years your DNA could be sequenced thousands+ of times a
day, everywhere you go in public, akin to how you are photographed now with
security cameras, in the background of selfies, et cetera. In that sense
because of abundance there’s 0 value in our DNA. From an engineering
standpoint it’s going to happen and there’s nothing you can do about it.

------
jakereps
> Genes can be hacked. Scientists have discovered how to store data and even
> animated GIFs in DNA, and even believe malware could be placed in DNA to
> compromise the security of computers holding databases. Still trust them?

Trust who? This bullet makes no sense to me. The entire list seems to boil
down to "big company bad, wear tinfoil hat." There are certainly valid reasons
one would not want to have their DNA sequenced by a public for-profit company,
but this list is reaching.

> A pair of socks is a better gift.

I mean, really?

~~~
mrmuagi
I really agree with you. Specifically, "20\. Genes can be hacked." reads
ridiculously to me.

>Scientists have discovered how to store data and even animated GIFs in DNA,
and even believe malware could be placed in DNA to compromise the security of
computers holding databases. Still trust them?

This is nonsense of the highest order. People can print the binary of malware
on a reams of laser printed paper. Do I still trust paper? The generalisation
of the arguments made in this article is egregiously fallacious.

The notion of gifting socks just seems to bring in Christmas-like warmth and
appeal to the readers past experiences (who hasn't been gifted cloths...). All
in all, you are right, the sock gifting doesn't fit, even if it is an
admittedly better idea.

~~~
Balgair
I believe that the bullet point is meant to illustrate that silly things can
be easily put into your genetics, therefore it is also easy to put in
malicious things. The BRCA1 gene being an example of a malicious set of
genetic code [0]. In addition to harm to the person whose genes may be edited
in the future, you can then modify the genes sent into the companies so that
they can hack the companies. I'd imagine that pulling a 'Jimmy DROP TABLE
Reads);' [1] is not something that the machines are QA'd against. Also, if you
were to use the databases of these companies as a 'storage' for future
comparisons, nothing is stopping anyone from putting strange stuff into your
digital representation of the code.

Essentially, the companies aren't doing QA on their genes and they should.

[0] [https://en.wikipedia.org/wiki/BRCA1](https://en.wikipedia.org/wiki/BRCA1)

[1] [https://xkcd.com/327/](https://xkcd.com/327/)

------
irrational
>You will jeopardize the anonymity of family members

Too late for me. I have 7 siblings and 4 half siblings. I have 10 aunts and
uncles who are blood relations (I'm not including their spouses) and about 70
first cousins. Plus my parents and grand parents. To the best of my knowledge,
almost all of them have had their DNA work done by ancestry and 23andme. The
family has a lot of doctors (some of whom are boarded in genetic medicine)
that think everyone (not just in the family, but literally everyone) should
get their DNA tested to help answer questions about family history,
migrations, diseases, etc. I'm considered odd because I don't want to get mine
done, though it's probably pointless since so many people that share my DNA
have already done it.

~~~
zmmmmm
This is unfortunately the same boat everyone is in.

If any 2nd or even 3rd degree relative has their DNA information banked with
any of these services then you are effectively identifiable. Police or anybody
who can get a sample of your DNA left behind anywhere will be able to
immediately identify your family, then rapidly rule out most of the other
family members through orthogonal information and in most cases you will be
the only candidate remaining.

So the real question is, if you already lost your anonymity, is there anything
left to lose by buying in? You might as well get the benefits if you are
having your privacy destroyed anyway.

~~~
asdff
Is it not a good thing to catch a criminal in your family? I've yet to see a
compelling argument that explains all the tinfoil. Replace DNA with
fingerprint and it's the same piece.

~~~
zmmmmm
That's sort of an extension of the "if you've nothing to hide then you've
nothing to fear" type argument.

One can counter with "what if you're a journalist who published leaks of
damaging government information and you're trying to protect a source" or
various other scenarios where keeping your identity anonymous is legitimate
and legal.

------
inciampati
> Genes can be hacked. Scientists have discovered how to store data and even
> animated GIFs in DNA, and even believe malware could be placed in DNA to
> compromise the security of computers holding databases. Still trust them?

This is really hyperbolic. Who is behind the institution publishing this and
what are their motives?

Edit: Oh... Mozilla????

~~~
peteradio
What about this is hyperbolic? We live currently in the future and 10 years
from now is the far future.

~~~
astrea
I wouldn't say hyperbolic as much as irrelevant. What does the ability to hack
DNA have to do with having my complete genome? So you'll have a Petri dish
full of cells with my DNA + malware? Then what? (I realize 100% that I'm
ignorant here and am genuinely interested in the answer).

~~~
peteradio
> Then what?

I guess my point is that shit is happening fast, already unimaginable stuff is
happening (DNA + malware in petri dish WTF would that have even meant 2
decades ago?) So if there are two miracle steps needed to make something
insane happen and one has already occurred then shouldn't we be ready for some
insanity?

------
formalsystem
I used Ancestry in the past but didn't really get much info, basically I'm
Mediterranean which I know I am since that's where I grew up and links to some
random 6th degree cousins which TBH could be anyone given that I'm from a
country with a total population of ~4M.

I ended up downloading my data and canceling my Ancestry service since I
wasn't comfortable with how that data could potentially be used in the future
(one term of services change from sketchy stuff happening).

Question to people here, what can I do with this data I've downloaded? Data
was surprisingly small, just 5MB - with 5 rows: rsid, chromosome, position,
allele 1, allele 2. Is there any OSS software I can run on my machine to learn
something useful about myself?

~~~
drocer88
Go here : [https://www.ebi.ac.uk/gwas/docs/file-
downloads](https://www.ebi.ac.uk/gwas/docs/file-downloads)

Agree to the EuroBS cookie thing then Download the tsv file and load into a
spreadsheet.

Then search for your "rs*" ids. (rsid is the canonical SNP, single nucleotide
polymorphism, identification number ) Example "rs id" looks like rs2179129.
Duckduck the rs id if you want more info.

If you know a programming language, you can automate processing of the file
you got from dna info provider and the the gwas catalog file from NHGRI.

------
inciampati
Unfortunately, you would have to live in a plastic bubble to make that
possible. You probably shed many petabases of your DNA every day. Your DNA is
no more private than your face. The best you can do of you don't want to
reveal it is to never leave the house. Also, don't have family, relatives, or
members of the same species to reveal your secret...

~~~
Gatsky
This is unnecessarily paranoid. It would take a concerted effort to obtain a
good quality and sufficiently pure DNA sample from a person's ambient DNA. In
the mythical scenario that someone wanted to get your whole genome sequence
without you realising, they would need to collect many ambient samples (the
gum you just threw in the bin, swabs of handles and keypads that you just
touched, hair samples) and perform whole genome sequencing, which would cost
multiple thousands of dollars. 23andMe's crappy SNP test is useless on a
sample that could be contaminated with other human DNA.

~~~
rootusrootus
Full sequencing is under a thousand bucks now and has even been on sale once
for $200. Another year or so and I bet you will be able to have it done for
less than $100

~~~
btilly
Do you have a source?

My understanding is that what 23andme et al do is very far from actual full
sequencing.

~~~
dekhn
you can get 30X at $800 from at least one provider but that's not saying much,
I think most people would prefer higher depth for accurate variant calling.

~~~
btilly
I am following this with interest.

I have some variant of Marfan's syndrome but have not shown the associated
heart problems. After consultation with a geneticist we concluded that I could
spend a bunch of money to get the exact variant that I have of the relevant
genes sequenced. But almost certainly I would learn that I have some variant
of Marfan's syndrome that is not understood. Relatives who also have the same
phenotype can get sequenced to verify that it is genetic. But since none of us
are showing the most troublesome problems, and the literature almost certainly
doesn't have our exact variation, I would learn nothing more than I know
already.

So just get an MRI every 5 years, and wait for costs to come down and research
to improve. In 10-15 years look again and maybe the genetic test will be
useful then.

For a genetic condition as specific as mine, the sequencing done by these
commercial providers is useless.

~~~
dekhn
I agree. I know a lot of genomics and health and after having my whole genome
done, the results were worthless- I knew more than the genetic counsellors and
had to explain to them that just randomly googling for SNPs and grabbinbg
keywords from the research papers was a terrible idea.

There are a few very well done genetic tests for a limited number of diseases.

~~~
Gatsky
Finally, a voice of reason.

------
sbassi
I prefer to share. Here is mine.
[https://github.com/sbassi/MiGenomaSbassi](https://github.com/sbassi/MiGenomaSbassi)

------
mises
The genie is out of the bottle; wait ten years and DNA will be mandatory to
include in passports, drivers licenses, etc.

Same thing with facial recognition. I still hate fingerprinting.

None of these biometrics are perfect, and my core objection to all is that
they make every one a suspect. Suddenly, it's possible that any person in the
nation could be "matched" and, simply by the say-so of the all-powerful
computer, determined guilty.

My math professor used to make fun of students for relying too much on
calculators. He would tell a story of a student who received an answer of
several million miles from his calculator on a problem concerning distance
between two cities in America. Because it came from his calculator, he took it
as gospel, even though it was obviously wrong. There is no reason to expect
better of our law enforcement or of our governments. See the cases of
incorrect DNA testing getting people locked away for years.

I hope there is some way to eradicate biometric technology. I do not see a
huge benefit, as it can be forged. And if the information is ever leaked, it
cannot be changed. Fingerprint got uploaded to the internet? Nothing to be
done.

Is any American politician actually advocating to stop this, possibly outside
of the Libertarian Party (which I generally like, but will sadly never be
elected, especially if they keep putting up Gary Johnson)? This might just be
enough to convince me to support a candidate of one of the main parties.

~~~
dcbadacd
There's no way to eradicate biometric tech, there's no way law enforcement
will stop using biometrics, the only thing we can ask for it more transperency
how the biometric data is used, processed and stored. No hidden
fingerprinting, no unknown-quality proprietary software and hardware, extra-
strict quality and integrity controls. The genie is out of the bottle and we
can only hope not to wish for the genie not to maliciously comply with our
wishes.

~~~
mises
I don't buy any "transparency". Any time I hear that word, I jump to the idea
that it is being used to mask something by releasing most things. I don't
really care _how_ it's used, processed, stored, etc.; I care that it _is_. The
feds want a biometric database of every American that can be used to track,
monitor, and regulate movement.

We were supposed to live in a nation where law enforcement didn't watch us
unless we were a suspect in a crime. This stuff makes everyone a suspect. The
idea of "transparency" only works if we have some way to verify it (which we
don't) and if we can punish politicians or bureaucrats for abuses. We can
barely fire bureaucrats as-is, how will we do it in the future? And
politicians never get punished for mishandling a few cases.

------
abstractbarista
I actually want to submit some other person's DNA to them, so it can be in the
DB as mine. Would they notice this, assuming I find another <same race, same
sex> person?

~~~
Real_S
Genetic data can be used to identify you, so although this trick may provide
some obfuscation, ultimately it would place your identifiable information in
the data base.

And if a close family member is in that data base, you would be identified
immediately.

~~~
ignoranceprior
I think you misunderstand. GP's idea was not to submit their own DNA under
someone else's name, but rather to submit someone else's DNA under their own
name (as a decoy).

------
dstroot
I paid 23&me to test my DNA. I have received the results. Now I have no idea
how that information is being re-used or sold. I plan to submit a delete
request of my data when CA’s CCPA law goes into effect.

~~~
klmr
> Now I have no idea how that information is being re-used or sold.

You were explicitly asked for permission (in clear, non-caged language) when
you accessed your data. If you declined, your data isn’t being resold. Other
reuse is restricted to the extent that you’re answering voluntary 23andme
questionnaires, and used in a non personally identifiable way (i.e. in summary
statistics).

------
BuffaloBagel
An unknown half-brother found me after an Ancestry.com DNA test. It's been a
weird but very fulfilling experience for me. I realize it's not that way for
everyone.

------
EnFinlay
"Come on we need 23 reasons because of 23 chromosomes! I don't care how stupid
the list is, just hit that number"

------
sorokod
This is security 101 - reduce the attack surface.

------
Jerry2
About a year ago I saw a link here on HN from an Intel(?) guy in which he
listed ways that DNA info can be abused. I tried to find the talk but have
been unable to. Does anyone remember the talk and has a link?

~~~
Real_S
Excellent talk!

[https://www.youtube.com/watch?v=HKQDSgBHPfY](https://www.youtube.com/watch?v=HKQDSgBHPfY)

~~~
Jerry2
That's the one! Thank so much Real_S! Everyone needs to watch this before you
spit into that sample bottle and send it away to some giant corporation.

------
austincheney
If pharmaceutical companies want access to my DNA then fine... they can pay me
for that access. I will not give it away for free and certainly not let them
charge me money for it.

------
djsumdog
I thought these companies didn't actually sequence your DNA. Smarter Every Day
did a video where they showed how your DNA samples are checked for several
know markers to see if they attach. Unless you specifically allow it, the
samples are then destroyed.

I still wouldn't get one of these tests, mostly due to accuracy issues and
because I really just don't care, but I feel like some of this article is fear
mongering.

------
SilasX
Oh, that's cute, thinking you have a choice. As DNA tests get cheaper and more
powerful, a rando could get it just from hair or skin cells you leave behind.

Similar issue for giving your full legal name to a stranger, which will be
hard to protect has facial recognition gets better.

~~~
logifail
> Similar issue for giving your full legal name to a stranger, which will be
> hard to protect has facial recognition gets better

Not uploading your entire life including photos tagged with your real name to
social media helps quite significantly with this.

------
NeoBasilisk
I understand the sentiment of caution here, but some of those reasons listed
were really dumb.

------
oarabbus_
Ancestry is pretty crap and a waste of money if you aren't of European
descent.

------
chriscaruso
The list was not compelling at all.

------
trabant00
>4\. Racists are weaponizing the results. White nationalists have flocked to
commercial DNA companies to vie for the highest race-purity points on
extremist websites.

Hitler drank water. Stay away from it.

Also, from the original quoted guardian article: "like many things in life,
direct-to-consumer genetic testing is tailored for white people".

> 10\. A pair of socks is a better gift.

The smartest question I can ask about this: what the fuck is this shit?

~~~
devmunchies
The word "weaponized" made me roll my eyes. Some rascists with little
influence outside their circle on a corner of the internet is hardly a weapon.
Now what the govt (using DNA for prosecution) or big business is doing with
the DNA _does_ seem dangerous.

------
logram
The danger about making these lists is that you may end up thinking that you
have to get a high number of reasons to make your claim seem valid. I would
not be surprised if the author started stating five to ten reasons and then
thought that 23 was a good number for the reference, therefore proceeding to
fill up the article with whatever nonsense. That's the only process I can
think of that nets you "they sell your DNA to other companies", "scientists
can make gifs with your DNA" and "companies buy ads" to be arguments in the
same hierarchical level.

Some of them are pretty serious consequences of using their services: some of
them involving the company's practices, and others involving the dangers of
developing this industry. Both should be considered in separate to get a
clearer picture of the issue. This article is treating it as BuzzFeed treats a
new game of thrones episode, therefore depriving it of any legitimacy.

I'd like to see more elaborated on three points particularly: the privacy
implications of having your DNA shared, the accuracy and precision of the
purported results and the possible dangers of applications of this industry.

~~~
bluetidepro
Personally, I just assumed the "23 reasons" was a play specifically targeted
at the company "23andme" (one of the major DNA testing companies)

~~~
gmanley
And they got their name from the fact each cell normally has 2 pairs of 23
chromosomes.

~~~
tantalor
No, the cell has 23 pairs of chromosomes.

You don't keep your shoes in 2 different piles for lefts and rights; you pair
them together.

~~~
master-litty
There's a joke here about C programmers and header files, but I don't have the
wit to pull it together.

~~~
thsealienbstrds
C programmers are at the end of their wits anyway.

------
neokantian
They do not mention the real reason why governments are scared to death by
systematic DNA testing: it trivially reveals paternity fraud. In the current
climate of rampant promiscuity and related deception, it could very well
affect the amount of money men provide, while inflating the already ballooning
welfare budget. It is clearly a gender issue.

~~~
devmunchies
that was hinted at in point 7, no?

> You could become emotionally scarred. You may discover things you weren’t
> prepared to find out.

------
Myrmornis

      1. The results may not be accurate
    

23andMe and ancestry.com are accurately sequencing DNA and providing ancestry
interpretations in line with peer-reviewed science.

    
    
      2. Heritage tests are less precise if you don’t have European roots.
    

Human ancestry is extremely well-studied. These studies have included large
numbers of genomes from many different ancestry groups. Certainly, the common
ancestry groups among the likely readers of this article are well-represented
and studied.

    
    
      3. Your DNA says nothing about your culture.
    

From a statistical point of view, your DNA contains information about the
ethnic groups to which your ancestors belonged. That in turn contains
information about the culture in which your ancestors, and you, find
themselves. If the author means "says nothing" in a sense other than
"statistical information" then it would be interesting to learn what this
sense is.

~~~
Gatsky
23andMe don't sequence DNA. They use extremely low resolution SNP chips. Such
SNP chips are currently used in exactly zero real world (human) medical
applications. This is because they are useless as a test with anything near
acceptable diagnostic performance. Anyway, the point of the article is that
the interpretation of the results may not be accurate, and that is a fairly
generous way to put it.

~~~
searine
> Such SNP chips are currently used in exactly zero real world (human) medical
> applications.

That's not true at all. There have been dozens of publications using that data
and they have been instrumental in progressing our knowledge of genetic
associations.

I have personally used 23andMe's array based data and resulting associations
to investigate disease. It is priceless and hugely beneficial.

~~~
Gatsky
There is no medical test that uses these chips. You describe research into
genetic associations - that is an entirely different matter.

Also, whether the type of information obtained from a 23andMe style test has
any material impact on health is very much unproven, as outlined in their own
terms of service, and the fact they were poleaxed by the FDA for overselling
the utility of the test.

~~~
wolco
If you didn't know you had something like Gilbert's syndrome this test would
tell you that these genes were different

UGT1A1 UGT1A10

You can take that information research more or change your lifestyle / diet to
put less stress in processes that involve those genes.

Very useful or useless depending on who you are.

~~~
Gatsky
It tells you if you have the SNP it tests for in those genes. It doesn't tell
you anything else.

Gilbert's syndrome is pretty common. The vast majority of people that have it
are not bothered at all. There is also no proof that lifestyle interventions
are in any way helpful. This is the case for basically everything that 23andMe
tests for.

If you want to raise a proper counterexample, you would choose the BRCA1 gene.
But again 23andMe's test doesn't tell you whether or not you have a BRCA1
mutation, it only tells you if have one of the SNPs they test for. If you
don't get a positive result, and that is the vast majority of people, you
aren't any better off. That's why in the clinic when someone needs a BRCA1
test, we sequence the whole gene using next generation sequencing
technologies.

~~~
wolco
The majority of people are bothered by it. Having a 1/3 of the ability to
detoxify certain things means stresses on other systems. Very few are saying
my GS is making me feel foggy and tired but it does.

There are a lot of studies that show lifestyle influencing Gilbert Syndrome
sufferers. The most common suggestion is to avoid drinking.

Not sure it's as completely useless as you believe.

