Think twice before analyzing/releasing your genetic data

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: <a href="http://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act" rel="nofollow">http://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimi...</a><p>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.

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.

There are more positive sides than negative about sharing genome information. For reference, check out: <a href="http://www.personalgenomes.org/" rel="nofollow">http://www.personalgenomes.org/</a> - 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!

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.<p>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.<p>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.

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:<p>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.<p>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.<p>It is also unlikely that in the future genomic information as it exists today will ever be able to predict risk accurately.<p>So don't worry. Or even better, don't waste your money and don't worry.

Oddly enough, this is similar to publishing social data.<p>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.

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.

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.

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?

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.<p>This must change the way insurance companies decide to cover, and how much they charge.<p>Or health care itself must change from largely insurance provided, to "something else."

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: <a href="http://www.win-vector.com/blog/2008/03/do-not-let-your-medical-records-be-used-against-you/" rel="nofollow">http://www.win-vector.com/blog/2008/03/do-not-let-your-medic...</a>

Q for the OP: Does this advice apply to consumer genetic testing services like 23 &#38; Me?<p>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!

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.

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).

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

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