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Think twice before analyzing/releasing your genetic data

jacquesmattheij.com

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Re: Think twice before analyzing/releasing your genetic data

#31

Post by jerf »

slowpoke wrote: post #9
AngryParsley wrote: post #7

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... 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-discrimi…

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.

But this is a problem society is going to have to deal with head on. Trying to protect your DNA is futile. Maybe you shouldn't post the results, but it doesn't exactly take a lot of serious interaction with the medical system before they're drawing blood for something or other. And in the very near future, they'll probably want to start sequencing your genes almost as often, as we enter the era of being able to tell from your genes whether a given drug will be effective or not, etc.

I don't deny there's a problem, but this is at best a several-year stopgap, not a solution. You will want them to sequence your DNA to determine which cancer drugs will work best when you are sitting in an office with cancer.

The problem is that medical insurance is currently uncomfortably between actual "insurance", coverage for unknown and expensive catastrophic events, and "health care", a program for spreading the costs of health care between many people to equalize the burdens and also sort of cover the insurance use cases. Expanding our knowledge of what you might get starts breaking down the premises the insurance system is based on.

Re: Think twice before analyzing/releasing your genetic data

#32

Post by gwern »

cyanbane wrote: post #21

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?

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.)

Re: Think twice before analyzing/releasing your genetic data

#34

Post by danssig »

CaptainZapp wrote: post #16
AngryParsley wrote: post #7

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... 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-discrimi…

So: what about if you apply for insurance and are asked along the lines "if you have any knowledge of a high probability of specific illness due to genetic testing?" Sure, you can lie. But god help you if you ever need coverage [even for a non-related disease] and the insurance just flat out won't cover you. I for one rather don't know and don't. One of the major reasons is exactly the one described above.

Personally, I would recommend moving to a country where you don't have to worry about such fears. Any non-US first world country will do.

Re: Think twice before analyzing/releasing your genetic data

#36

Post by dirtyaura »

hinathan wrote: post #5

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.

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.

Re: Think twice before analyzing/releasing your genetic data

#38

Post by onemoreact »

blake8086 wrote: post #37

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).

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

Re: Think twice before analyzing/releasing your genetic data

#39

Post by kolev »

mjwalshe wrote: post #13
kolev wrote: post #8

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…

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.

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.

Re: Think twice before analyzing/releasing your genetic data

#40

Post by sycren »

jacquesm wrote: post #18
sycren wrote: post #12

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.

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 symptom…

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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