Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

Think twice before analyzing/releasing your genetic data

jacquesmattheij.com

Post reply on HN
Print view View original

11–20 of 46 posts

Re: Think twice before analyzing/releasing your genetic data

#11

Post by polymatter »

dawgr wrote: post #6
wouterinho wrote: post #3

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.

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?

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.

Re: Think twice before analyzing/releasing your genetic data

#13

Post by mjwalshe »

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.

Re: Think twice before analyzing/releasing your genetic data

#15

Post by borism »

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.

how are you planning to get rid of your DNA?

Re: Think twice before analyzing/releasing your genetic data

#16

Post by CaptainZapp »

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.

Re: Think twice before analyzing/releasing your genetic data

#17

Post by darklajid »

nodata wrote: post #10

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.

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.

Re: Think twice before analyzing/releasing your genetic data

#18

Post by jacquesm »

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 symptoms if you don't use a high enough cut-off you'll be engaging in a high-tech variation of medical students disease.

Re: Think twice before analyzing/releasing your genetic data

#19

Post by 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.

Re: Think twice before analyzing/releasing your genetic data

#20

Post by slowpoke »

borism wrote: post #15
slowpoke wrote: post #9

Earlier quoted context omitted.

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.

how are you planning to get rid of your DNA?

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.
Post reply on HN