Think twice before analyzing/releasing your genetic data(jacquesmattheij.com)
jacquesmattheij.com
Think twice before analyzing/releasing your genetic data
http://www.jacquesmattheij.com/Your+Genetic+information+is+not+just+yours+but+it+is+family+property
16 comments
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.
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.
Yes, exactly, and we know that insurance companies will find ways to harass if not abuse data when it's in their interest. Remember the health insurance companies that give employees bonuses to find ways to invalidate a customer's policy when that customer suddenly has an expensive claim.
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.
you leave traces of your dna everywhere all the time
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.
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.
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.
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?
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
I used these instructions: http://www.ianlogan.co.uk/Submission.htm
Thank you!!
That's an excellent approach.
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!
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.
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.
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.
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!
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.
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.
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."
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.
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.
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.
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.
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.
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.
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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.
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.
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.
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."
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."
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...
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!
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.
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.
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.
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..
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..
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.
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.
I'll go grab my tinfoil hat and be right back.
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.