

Think twice before analyzing/releasing your genetic data - eapen
http://www.jacquesmattheij.com/Your+Genetic+information+is+not+just+yours+but+it+is+family+property

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AngryParsley
This is not an issue in the US. The Genetic Information Nondiscrimination Act
makes it illegal for insurance or employers to discriminate based on genetic
information. See Wikipedia for more:
[http://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimi...](http://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act)

Considering how easy it is to get ahold of someone else's DNA and the
potential advantages of genetic testing, I think it makes more sense to push
for anti-discrimination laws instead of avoiding genetic testing.

~~~
slowpoke
Except those laws won't do anything to prevent abuse. It's the same as with
tracking data, really: the only way to prevent abuse is if there is no data to
be abused in the first place. You're severely deluded if you think laws will
prevent the abuse of this data, much less discrimination based on it.

~~~
borism
how are you planning to get rid of your DNA?

~~~
slowpoke
You're essentially saying the same as "if you don't want your habits to be
tracked and analyzed, get rid of your habits". I'm not planning to get rid of
my DNA (why would I?) - I'm just not handing it over to just anyone, least of
all a business.

~~~
borism
you leave traces of your dna everywhere all the time

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apaprocki
There are different ways to help advance science without publishing all of
your genetic material. As someone who has published my own mtDNA and my
father's mtDNA to the NIH GenBank, I feel like I am meeting science in the
middle. The mtDNA alone is not particularly useful for identification, but it
does help population geneticists who are at a severe shortage of information
for certain groups. My father's mtDNA happens to be in a rare haplogroup that
only has 4 public samples.

~~~
toomuchtodo
How can I go about publishing my own genetic data to the NIH GenBank sequence
database? If I've already done genotyping with 23andme, is the raw data
acceptable for submission?

~~~
apaprocki
Sadly, 23andme data will not be enough. If you want to submit mtDNA, you will
need the full sequence. I used FTDNA to fully sequence the mtDNA. They give
you a link to download the FASTA file after it is done and that file can be
prepped to submit after you have it.

I used these instructions: <http://www.ianlogan.co.uk/Submission.htm>

~~~
toomuchtodo
Thank you!!

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kolev
There are more positive sides than negative about sharing genome information.
For reference, check out: <http://www.personalgenomes.org/> \- smarter than us
people have already donated their fully-sequenced DNAs (23andMe, Navigenics,
deCODEme, and others don't sequence your full genome for now). Paranoia never
leads to progress! Anyway, there's a law that you cannot be discriminated by
insurance companies and employers with your DNA. Also, with ObamaCare in 2013
you can't be turned down for insurance either. And medicine's only chance for
significant breakthroughs is through genomics. And, last, but not least: my
DNA is mine and nobody else's, so, if my children and grandchildren have an
issue with me sharing my own genome, sorry, but enjoy what you've inherited
and quit whining, bastards!

~~~
mjwalshe
Do you think that will stop the insurance industry finding ways around this.

And if you have some marker that means that your children cannot get good jobs
with health insurance - congratulations you have just condemned your kids to
live on the bread line.

~~~
kolev
Paranoia can take you only that far. HN is supposed to be a place where smart
people with big data in there minds hang out. Imagine when insurance companies
has everybody's DNA - you think there's a perfect DNA? No, everybody has a
different sets of risks. Again, just because you have a risk, it doesn't mean
that you will developer the disease. For example, according to 23andMe, I have
a lowered risk of Melanoma, yet, 8 years ago, I had stage 0 Melanoma.
Genetically, my children are safe as their DNA is clear, but this won't
prevent insurance companies tracing my kids health records to mine, if you
know what I mean. If you look at the current research, risks are +/- a few
percent, so, it doesn't really give you much except certain conditions. But it
is much better for you personally to know what you're highly predisposed to
than to be a paranoid chicken and not get your DNA sequenced.

~~~
mjwalshe
No if the insurance companys get hold of your you will be "Fucked" If they can
find loop holes to increase your premiums they will.

~~~
kolev
Health insurance isn't like auto insurance and the plan pricing is only driven
by age. So, for a few more months, insurance companies can decline coverage to
certain people, but as of next year, there's nothing those crooks can do!

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eapen
This is very helpful advice. I had considered publishing my DNA from 23andme
after seeing others had posted their genetic data. I am really glad, I didn't
and think its quite important that you consider others (including your
siblings + kids) before publishing such data.

Update: Thanks po. I hadn't really considered the risk of submitting data to
23andme in the first place. Updated the title to reflect this as well.

OT: Despite knowing this, I am sure I would have tried the service anyway.
However, after seeing the data, I haven't found it too helpful. Probably,
because most of their data is based on older Europeans and I don't fall in
that category.

~~~
po
I think jacques is taking it one step further and suggesting that you think
twice before even submitting your data to a company like 23andme at all. It's
an interesting point. I'm trying to think of what kind of privacy policy would
cover all possible nefarious uses of that data. I think it basically would
have to be one like "We won't give your data to anyone except you, even in
aggregate and in the case we go out of business or are bought, we will destroy
all of the data."

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Gatsky
This is important advice. There are doctors who train for many years to
counsel people and guide them through the decision making process about
genetic testing for diseases. However the blog post obfuscates the fact that
the kind of genome sequencing available to the public online is pretty
harmless, for two reasons:

A. There is no way to predict accurately individual risk of disease based on
genetic information EXCEPT for a few rare diseases associated with highly
penetrant mutations such as Huntington's disase, BRCA mutations (breast and
ovarian cancer syndrome). Even then, taking 23andme as an example, they do not
sequence enough of the BRCA gene to provide meaningful results.

B. Detailed risk profiles do not appear important to health insurance
companies. You can work this out by the questions they ask you - they are
mainly interested in pre-existing conditions. Using blood pressure,
cholesterol and family history it is possible to generate a pretty good
estimation of the risk of heart disease, but AFAIK an insurance company
doesn't care about this.

It is also unlikely that in the future genomic information as it exists today
will ever be able to predict risk accurately.

So don't worry. Or even better, don't waste your money and don't worry.

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nodata
Oddly enough, this is similar to publishing social data.

If I upload my address book to Google, they can see who I know. Often who I
know is also who knows me. Without the people in my address book's consent, I
and my friends have collectively published the information for people who have
opted out.

~~~
darklajid
I disagree. That comparison feels wrong to me.

One is highly personal and immutable.

The other is less personal, however hard you try, and shouldn't be on the same
level as rants and bilge drinking pictures.

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hinathan
Fascinating point about parents — knowing their genome means you could in
principle know the entire potential configuration space of all their (real or
hypothetical) offsprings' genomes.

~~~
dirtyaura
Even if we ignore crossovers, potential configuration space for genotype is
very very large, 2^46. Add crossovers and mutations and variations in genotype
is practically infinite. Of course how that maps to variation in phenotype is
a complex issue.

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wouterinho
I had the same thought when considering sending DNA to 23andme, which is a US
company. Having your processed DNA in some database exposes you to a lot of
potential risks with little upside.

~~~
dawgr
Is it not possible to ask them to delete all my DNA data? My subscription will
end soon, can I just ask them to delete it completely in a clear worded email
to make sure there is no misunderstanding as to what I mean by "deleted"? Will
EU laws protect me from this or are they irrelevant since they are a US
company?

~~~
polymatter
If you do business in the EU, you must comply to EU laws. And to remove doubt,
a person physically located in EU counts as being in the EU. At least that was
what I was advised, but IANAL, this is not financial advice etc.

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cyanbane
Naive question, but how much of this information could be gleamed by a
nefarious source from an aluminum can you throw away or a piece of hair you
drop?

~~~
gwern
Enough to convict you in a court of law - cops do it all the time. (It's not a
search requiring a warrant if you throw the cup away, it turns out.)

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read_wharf
As this information becomes more widespread across populations and more
detailed per individual, it will degrade the current relationship between
insurance and customers that makes insurance work for both sides.

This must change the way insurance companies decide to cover, and how much
they charge.

Or health care itself must change from largely insurance provided, to
"something else."

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jmount
This is an issue (even in the US and Europe, where laws are going to at best
protect you from some of the possible abuses). I wrote on this also from a
similar point of view: [http://www.win-vector.com/blog/2008/03/do-not-let-
your-medic...](http://www.win-vector.com/blog/2008/03/do-not-let-your-medical-
records-be-used-against-you/)

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MediaSquirrel
Q for the OP: Does this advice apply to consumer genetic testing services like
23 & Me?

The reason I ask is that I'm considering using them to analyze my and my
newborn son's genetic code. I have not combed thru their TOS with a fine
toothed comb, however. Pls advise. Thx!

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sycren
Perhaps though by analysing your genetic data, you may also help those family
members if you find a gene that suggests the likelihood of getting cancer or
some other disease which, when treated early offers a better quality of life.

~~~
jacquesm
This is possible, but consider that a likelihood is definitely not a certainty
and that you are at risk of contracting far more diseases with a genetic
element than the ones that you will actually contract.

Carrying a gene does not automatically translate into getting a disease or
even a significantly elevated chance of getting a disease. That only works if
the chance is approaching near certainty, absent any symptoms if you don't use
a high enough cut-off you'll be engaging in a high-tech variation of medical
students disease.

~~~
sycren
I do realise that as a bioinformatician, but we need more genetic data from
multiple people to see if there are any trends with certain genes that do
predict illnesses. I really would like in the future to see blood tests test
for everything rather than something specific. While it will be argued that
this would create a lot of false positives I think that utilising machine
learning and datasets from a whole population we will start finding the
probabilities of certain illnesses and will hopefully lower the chance of a
false positive.

Recently a University in the UK was doing some brain scans for psychological
research using volunteers. Two of these volunteers were found to have brain
tumors that they would not have found out about until probably too late which
is why I wish testing was more streamlined..

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blake8086
I don't understand how we can really expect to conceal our genetic data.
Everyone leaves it everywhere all the time (lost hairs, skin cells, saliva on
discarded beverage containers).

~~~
onemoreact
You could say the same things about fingerprints but it's uncommon for a
company to collect your fingerprints without you knowing.

~~~
blake8086
I think that's a good point, but the stakes are quite a bit higher with your
genome, since it can reveal a bunch of information about medical costs you're
likely to incur, and how much shorter or longer than average you'll live.

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Joakal
How would one poison pill genetic data to the point of it being worthless to
associate with the individual?

~~~
cjbprime
It's probably impossible; groups have already tried to anonymize genetic data
and failed, and our ability to match genotype to phenotype is only getting
better.

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nefasti
I'll go grab my tinfoil hat and be right back.

