13 ms·

Taking an Ancestry Test Could Make It Harder to Buy Life Insurance

96 points by Jerry2 8y ago

maxxxxx 8y ago
This is starting to be crazy. There is almost nothing you can do without having to worry about what some other party may do with your data. Walk in the street and have a video taken that's then processed and analyzed. Buy something and probably hundreds of companies will know about it. In this particular case the insurance company should not be able to request data from the past. If they want any data they should order tests themselves and only use that data.
- JadeNB 8y ago
  > This is starting to be crazy. There is almost nothing you can do without having to worry about what some other party may do with your data. Walk in the street and have a video taken that's then processed and analyzed. Buy something and probably hundreds of companies will know about it. I'm with you on this paragraph … > In this particular case the insurance company should not be able to request data from the past. If they want any data they should order tests themselves and only use that data. … but you lose me here. By this logic, it seems like car-insurance companies shouldn't be able to look at my driving history, but should have to administer me a driving test themselves. This would clearly make premiums skyrocket, and I don't think is the right solution.
  - maxxxxx 8y ago
    Maybe have some standardized record of relevant issues. But it can't be that you do something, pay for yourself and then have to disclose that. On a side note I am not even sure if individualized car insurance (and health insurance) prices are worth the effort of collecting all that data. You have to build up a big bureaucracy that evaluates all the data. Maybe it's cheaper to just take a nationwide average and save money by not needing that bureaucracy?
    - bilbo0s 8y ago
      The thing is though that JadeNB is still making a good point. Hypothetically, if I were to give my DNA to many of these services, I'm giving it to them with full understanding that they are allowed to share that information with anyone they see fit. Well, I can't now complain that they saw fit to share it with my insurance company can I? I certainly can't complain that my insurance company was interested in getting that data. The insurance companies collect relevant historical data for every other type of insurance. I do agree with you that your DNA should be private. And it is private, so long as you keep it private. Telling a thirdparty, especially one who is a known loudmouth, the details of your DNA is the opposite of keeping it private.
      - maxxxxx 8y ago
        "Hypothetically, if I were to give my DNA to many of these services, I'm giving it to them with full understanding that they are allowed to share that information with anyone they see fit. " I know legally this is ok but "sharing as they see fit" practices just need to stop. We have to go back to a model where the customer pays for a service and that's it. No sharing in the background to subsidize the cost of the service. That would make some services more expensive but then the customer can share his data for a price. If he chooses to do so .
      - JadeNB 8y ago
        > The thing is though that JadeNB is still making a good point. I'm not sure that I agree with your summary of my point. In fact, I think that stronger regulations against data vendors are probably the right thing. I was merely arguing that a reflexive argument against allowing companies to gather external data might have unexpected consequences.
  - _jal 8y ago
    Exactly. There is no way to make that work without ending up with a pile of absurd results, or results that are "right" but for legally contorted reasons. The answer (to this narrow question[1]) is to not do business with shops like 23andme, who are horrible gossips. Find a service that actually respects you and your wishes if you want a test. Admittedly this will become harder as testing becomes part of medical care. But telling your doctor not to tell the insurance company what's going on would never fly anyway. [1] To the broader questions of medical privacy, well, burning the private insurance industry to the ground and chumming the PBMs would be a good start.
    - s73v3r_ 8y ago
      I think the actual correct answer is to legally ban services like 23andMe, or anything like them, from talking to insurance companies. Finding a service that actually respects you is exponentially more difficult than it sounds, as that relies on all the incidents already having been found out. Before this news, most people had no idea that this was happening.
    - PurpleBoxDragon 8y ago
      >Find a service that actually respects you and your wishes if you want a test. If they hold onto the data for any purpose at all, then their is always the risk that they go bankrupt and ownership of the data passes to someone who doesn't respect it.
eli 8y ago
I think the underlying issue is real, but the headline seems inflated. Has this ever actually happened to anyone? I recently bought life insurance and I'm pretty sure they didn't even bother to ask my primary care doctor for her records (though they had the right to), and they certainly didn't ask me about any tests I may have done on my own. (I think they did obtain at least some of my Rx history though. I assume from CVS Caremark.) Right now I think there's kinda the opposite problem with Long Term Care insurance where people who take a genetic test that shows high risk for e.g. Alzheimer's run out and buy LTC insurance which messes up the risk pool.
- maxxxxx 8y ago
  They may nail you later because you didn't disclose something. I know people who have been dropped from their health insurance after years of paying because they forgot to disclose a previous injury. I should add they got dropped when they had a claim. That means the insurance happily took their money until it was time to pay up.
  - Real_S 8y ago
    And this affects life insurance, so you wont be alive when they dispute your claim!
  - eli 8y ago
    I'm pretty confident that I answered every question accurately and that no answers would have changed based on anything I could have learned from a genetic test. Health insurers were really bad about "prior conditions" before Obamacare. I think life insurance has always been more tightly regulated. FWIW, my policy says the insurer can only challenge the application within the first two years.
    - maxxxxx 8y ago
      "Health insurers were really bad about "prior conditions" before Obamacare" It's good to know that the current administration is determined to take us back to those glory days :)
teeray 8y ago
> “If you apply for life insurance they do have a right to get all your medical records. And if you’ve had a genetic test taken, they do have a right to request it” This data isn't something an individual has full control over. What if one of your relatives took a genetic test? If that relative was denied for a policy on genetic test grounds, can you be denied for the same reasons?
- bilbo0s 8y ago
  Probably, but why would anyone in your family be disclosing their genetic profile when your family knows it has these sorts of things sitting in their DNA? I mean, if you're in a family where a lot of people get certain cancers, or congenital heart defects are common - well - exercise a little common sense and forego any DNA testing that Ancestry.com offers you.
  - throwawaymath 8y ago
    Doesn't it seem unrealistic to you to rely on your extended family members not to disclose that information? Whatever you personally believe is "common sense", your family might not have it - or they might simply disagree with you.
  - darpa_escapee 8y ago
    Nothing about this commercial[1] suggests there are privacy concerns or serious consequences when it comes to sharing DNA information with Ancestry.com. Common sense would be wrong in this case. Common sense would say that intimately private genetic information would be protected and not shared with anyone willing to throw ten cents Ancestry.com's way, lest there be lawsuits and fines. Often, this type of service is pitched to those with disease that runs in their family. Wouldn't you want your family member to know if they're affected so they can adequately treat disease before it becomes unmanageable? [1] https://www.youtube.com/watch?v=Yfz2KJQvH-0 https://www.youtube.com/watch?v=Yfz2KJQvH-0
chabsf 8y ago
The whole point of insurance is to distribute risk. At some point, if coverage granularity becomes too high, insurance will just become pointless, right?
- ajmurmann 8y ago
  I think it's more subtle than that. It's also about symmetry of information. If you for example do 23&me you might find it that you have a much increased likelihood of getting a fatal disease soon. Thinking about your family's financial future you might decide to get life insurance because of this new information. Your individual risk in this case is very different from the average, you know this and that's why you are getting the insurance. This scenario if it became common also would break the insurance model because the insured pool suddenly wouldn't include people with average risk but tend towards higher risk. This would lead to higher cost for everyone who is insured. In an extreme scenario the cost might get so high that it only makes sense to get life insurance for people who know they are likely to die soon. Of course the likely scenario is less extreme, but this shows the principle nicely.
  - emiliobumachar 8y ago
    Very well put. Systematizing the algorithm, we have: 1) Get tested 2) Use the test results to determine the actuarial value of your hypothetical life insurance 3) If the price is less than the value, buy the insurance. If not, don't buy.
    - solotronics 8y ago
      you could actually turn this into a business model
- emiliobumachar 8y ago
  I don't think so, no. If I know for a fact that someone has a 40% chance of dying tomorrow, it still makes sense for me to sell them insurance valid tomorrow only, charging 40% of payout plus some margin. It also probably makes sense for them to buy it, to guarantee the higher payout for their family if they die.
jbattle 8y ago
(US perspective) I've wondered if for-profit insurance as we know it can survive changes in advances in actuarial science & related fields. As I understand it, the entire concept of insurance is based around gathering relatively large groups of people with a solid understanding of their average risks for certain types of loss. Given the averages hold accurate over time, those that need a payout can get one, and the insurance company makes money in aggregate. However, the better the insurance companies can understand our risk profiles as individuals (going well beyond age/sex/smoking/etc/etc/etc) - eventually (in theory) a motivated insurance company is going to be able to determine that I have a 90% chance of developing Serious Syndrome X while you have a 97% chance of developing Minor Issue Y. Today we might get put into the risk pool. But as the science advances, the risk pools can be cut into finer and finer (and more accurate) risk pools. Why should a profit-seeking insurance company insure me past some point when the data strongly indicates i'm going to need drastic and expensive intervention. It seems like the three ways to avoid this are: 1. "Advances" like the one mentioned here don't turn out to have enough predictive power and insurance continues to operate much as before 2. Some people just can't get for-profit insurance, at least not for health coverage (I'd think accidents will always remain much harder to predict than e.g. heart disease). Pushing them into some kind of not-for-profit 3. Regulation forces blinders on to underwriters essentially saying "actuarial science advances to here and no further"
- klodolph 8y ago
  I don't think that's how risk pools work in the first place. The idea is not to put people with similar levels of risk in the same pool. The idea is to make the pool as large as possible, charge everyone for their expected cost + a margin, and then pay out everyone for their actual costs. It's the law of large numbers at work here. Take the mean value of a large number of variables with high variance and you end up with a mean that has low variance. Not only is it normal for people with condition X to be in the same pool as condition Y, but this is a good thing because the costs for people with condition X are less correlated with the costs for people with condition Y, and this reduces risk in the pool. For example, if you have a pool that only contains people with condition X, and then it turns out that a commonly used medication prescribed for condition X has horrible side effects, then that single problem is disastrous for the entire pool. > Why should a profit-seeking insurance company insure me past some point when the data strongly indicates i'm going to need drastic and expensive intervention. Because you pass laws that make it illegal for insurance companies to deny coverage on this basis, and then you turn around and pass laws to keep the pool healthy enough for insurance to still be profitable. Or you just nationalize it.
laken 8y ago
The upsetting thing with this whole "paying for the privilege of giving someone else your DNA" trend, is that even if you are opposed to it, relatives of yours essentially give your data too. For example, apparently, both my mother and father have already sent off their DNA to these various ancestry companies, which by extension means that I'm also in there, albeit slightly detached.
- blitmap 8y ago
  I dislike this too. It's like someone licensed your IP and gave it away freely to ancestry.com. The metaphor doesn't really fit if you are the derivative child, but yeah... the insurance companies would already be able to make predictions about me.
- bumholio 8y ago
  Sharing genes with other people has indeed been a source of headaches since the beginning of time (take, for example, the whole Garden of Eden fiasco). Luckily, the advantages of being inside the genetic group, like say inheritance, usually outweigh the nuisance.
  - deleted 8y ago
    [deleted]
Real_S 8y ago
Also, before you send your DNA off... Keep in mind that these companies are not legally allowed to delete your data. https://www.bloomberg.com/news/articles/2018-06-15/deleting-your-online-dna-data-is-brutally-difficult https://www.bloomberg.com/news/articles/2018-06-15/deleting-...
- howard941 8y ago
  FTA: "It’s a lesson we’re destined to keep learning: Once you share something online, you can’t really ever unshare it." Your genetic info is sort of like a trade secret in the USA, but without criminal sanctions when it's wrongfully appropriated.
- djrogers 8y ago
  Your claim contradicts both the article you linked to and the privacy policies of companies such as 23&Me and AncestryDNA per TFA.
aiCeivi9 8y ago
Wasn't there a novel, like 20 years ago, about insurance company having to hide massive profits from using DNA profiling? Does anybody remember its title? It looks like real life has catched up with fiction.
swebs 8y ago
Out of curiosity, how hard would it be to make an open-source, home ancestry test? Assuming that all the necessary data is there, which equipment would you need to sequence your DNA?
- namibj 8y ago
  Start in the high 4 digits. If you're lucky.
rrherr 8y ago
From The End of Asymmetric Information by Alex Tabarrok & Tyler Cowen: The actual problems with health insurance markets have less to do with information asymmetry and adverse selection than with too much information. That can make some people’s insurance very expensive at actuarially sound rates. For instance if you have a cancer of a given kind, this is verifiable to the outside world, and if the treatment costs are $200,000, the cost of an insurance policy will in turn be about $200,000. Buying the policy won’t be cheaper than buying the treatments, and in that sense the market for insurance is not always present. That is a very real public policy problem … The cheap sequencing of the genome may accelerate and intensify these issues. … https://www.cato-unbound.org/2015/04/06/alex-tabarrok-tyler-cowen/end-asymmetric-information https://www.cato-unbound.org/2015/04/06/alex-tabarrok-tyler-...
otakucode 8y ago
I literally got my DNA run now because I have real concern that in the future if you ever get it sequenced you will be legally required to share it with insurance companies, law enforcement, and many others. I'm hoping that I'll be able to get grandfathered in and not share mine.
rflrob 8y ago
The article does obliquely reference the Genetic Information Nondiscrimination Act (GINA), but then says it can be changed. This law was passed in 2008, for the most part before the rise of consumer ancestry tests. It seems unlikely to me that a major rollback of protections on these data is going to be easy to pass.
- _rpd 8y ago
  https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim... Interesting, I'd like to read more commentary on this act. Anyone?
jobigoud 8y ago
Could one poison the records by sending multiple samples of different blood sources attached to the same name? So the database query would'nt be conclusive, but you would know which test is legit. How would the ancestry testers react if I sent several samples in my name? Will there be a market for clean blood that you can use to confuse the records and get a sort of plausible deniability of identity?
LinuxBender 8y ago
This was already happening in 1994. I brought this issue up to my squadron commander regarding DNA samples the military was attempting to gather from everyone. He said, "What, are you afraid we are going to clone you?" To which I said, "No sir, you should be afraid if you cloned me." and we both had a chuckle because we both know I was right. I explained that insurance companies had already been denying claims for people laid up in the hospital based on "pre existing risk" that they might be at risk for getting cancer or becoming an alcoholic. He had me submit a FOIA request which bought me some time. It went all the way to Al Gore. I received boxes of paperwork that essentially amounted to "The Chief Medical Officer can decide what to do with DNA information and how it is managed." That bought me enough time to hit my four years and get out without having to challenge them in court. I never gave them any samples and I do not regret my actions.
- deleted 8y ago
  [deleted]
neverminder 8y ago
There's a simple anonymity hack, unless of course your relatives "out" you. I bought my 23andme kit from Amazon, then registered on 23andme website with a fake name. I have my results, but as far as 23andme are concerned I'm John Smith.
- phyzome 8y ago
  I was going to do this, but someone said that 23andme also takes a survey of family history, health, and demographic information—which is then used for actual research. I don't want to pollute data used for scientific research! How recently did you do this, and was there any information collection like that?
  - neverminder 8y ago
    I did this a few months ago, but I'm pretty sure the survey you mentioned is optional, at least I don't remember doing it, so you don't necessarily have to "pollute data".
    - phyzome 8y ago
      Sweet! And does the kit have any sort of identifier with it? If so, I was considering some sort of 23andme kit remixing service, where people pool funds to buy a bunch of kits, and then randomly select a kit from the shipment. :-)
      - neverminder 8y ago
        Just get it from Amazon, the packaging doesn't have any unique identifiers like serial number, so if you register with fake name/email on 23andme - you're totally anonymous.
  - PurpleBoxDragon 8y ago
    By choosing to not get a DNA test at all due to privacy concerns, didn't you also pollute the data, albeit in a different way? 23andme data will vastly under-represent people with strong privacy concerns which might have a future impact, especially if scientists using this data forget to take it into account.
djrogers 8y ago
Important point from teh article that about half of the posts here seem to have missed - this is not about health insurance, but life insurance. "while health insurers may not use or consider genetic test results when selling a policy, companies that sell life insurance, can."
magduf 8y ago
As a person who isn't old, lives below his means, and doesn't have children, I don't see the problem here. From my perspective, life insurance is nothing but a big scam. I don't anticipate dying any time soon, and if I do, I don't have any younger heirs. If I want to build wealth, I can do a lot better with index funds and mutual funds. Honestly, I just don't see the point of life insurance at all, unless someone has a family with children and doesn't have any significant wealth accumulated.
- solotronics 8y ago
  I think most people have a very minimal amount of capital accumulated. Life insurance exists to help their family not starve if they unexpectedly die. Its opt in which totally makes sense to me. I pay for it because it costs basically nothing for me as a healthy young person and it would provide a nice windfall for my girlfriend if for example my plane fell out of the sky.
  - perl4ever 8y ago
    We have survivors' benefits from Social Security in the US. The logical thing to do, from my perspective, would be to make the existing government program designed to insure everyone cover people sufficiently. Given that baseline, the market for life insurance doesn't matter so much.
CNJ7654 8y ago
This was a genuine concern of mine when getting a 23andme test done. I can't know for certain, but using the alias Steven Stromboli and shipping the test kit from my workplace (my name isn't on the return address) should have been enough to keep them from assigning a dna profile to me as a person
safgasCVS 8y ago
This just makes me want to watch Gattaca again

96 points by Jerry2 8y ago

This is starting to be crazy. There is almost nothing you can do without having to worry about what some other party may do with your data. Walk in the street and have a video taken that's then processed and analyzed. Buy something and probably hundreds of companies will know about it. In this particular case the insurance company should not be able to request data from the past. If they want any data they should order tests themselves and only use that data.

JadeNB 8y ago
> This is starting to be crazy. There is almost nothing you can do without having to worry about what some other party may do with your data. Walk in the street and have a video taken that's then processed and analyzed. Buy something and probably hundreds of companies will know about it. I'm with you on this paragraph … > In this particular case the insurance company should not be able to request data from the past. If they want any data they should order tests themselves and only use that data. … but you lose me here. By this logic, it seems like car-insurance companies shouldn't be able to look at my driving history, but should have to administer me a driving test themselves. This would clearly make premiums skyrocket, and I don't think is the right solution.
- maxxxxx 8y ago
  Maybe have some standardized record of relevant issues. But it can't be that you do something, pay for yourself and then have to disclose that. On a side note I am not even sure if individualized car insurance (and health insurance) prices are worth the effort of collecting all that data. You have to build up a big bureaucracy that evaluates all the data. Maybe it's cheaper to just take a nationwide average and save money by not needing that bureaucracy?
  - bilbo0s 8y ago
    The thing is though that JadeNB is still making a good point. Hypothetically, if I were to give my DNA to many of these services, I'm giving it to them with full understanding that they are allowed to share that information with anyone they see fit. Well, I can't now complain that they saw fit to share it with my insurance company can I? I certainly can't complain that my insurance company was interested in getting that data. The insurance companies collect relevant historical data for every other type of insurance. I do agree with you that your DNA should be private. And it is private, so long as you keep it private. Telling a thirdparty, especially one who is a known loudmouth, the details of your DNA is the opposite of keeping it private.
    - maxxxxx 8y ago
      "Hypothetically, if I were to give my DNA to many of these services, I'm giving it to them with full understanding that they are allowed to share that information with anyone they see fit. " I know legally this is ok but "sharing as they see fit" practices just need to stop. We have to go back to a model where the customer pays for a service and that's it. No sharing in the background to subsidize the cost of the service. That would make some services more expensive but then the customer can share his data for a price. If he chooses to do so .
    - JadeNB 8y ago
      > The thing is though that JadeNB is still making a good point. I'm not sure that I agree with your summary of my point. In fact, I think that stronger regulations against data vendors are probably the right thing. I was merely arguing that a reflexive argument against allowing companies to gather external data might have unexpected consequences.
- _jal 8y ago
  Exactly. There is no way to make that work without ending up with a pile of absurd results, or results that are "right" but for legally contorted reasons. The answer (to this narrow question[1]) is to not do business with shops like 23andme, who are horrible gossips. Find a service that actually respects you and your wishes if you want a test. Admittedly this will become harder as testing becomes part of medical care. But telling your doctor not to tell the insurance company what's going on would never fly anyway. [1] To the broader questions of medical privacy, well, burning the private insurance industry to the ground and chumming the PBMs would be a good start.
  - s73v3r_ 8y ago
    I think the actual correct answer is to legally ban services like 23andMe, or anything like them, from talking to insurance companies. Finding a service that actually respects you is exponentially more difficult than it sounds, as that relies on all the incidents already having been found out. Before this news, most people had no idea that this was happening.
  - PurpleBoxDragon 8y ago
    >Find a service that actually respects you and your wishes if you want a test. If they hold onto the data for any purpose at all, then their is always the risk that they go bankrupt and ownership of the data passes to someone who doesn't respect it.

eli 8y ago

I think the underlying issue is real, but the headline seems inflated. Has this ever actually happened to anyone? I recently bought life insurance and I'm pretty sure they didn't even bother to ask my primary care doctor for her records (though they had the right to), and they certainly didn't ask me about any tests I may have done on my own. (I think they did obtain at least some of my Rx history though. I assume from CVS Caremark.) Right now I think there's kinda the opposite problem with Long Term Care insurance where people who take a genetic test that shows high risk for e.g. Alzheimer's run out and buy LTC insurance which messes up the risk pool.

maxxxxx 8y ago
They may nail you later because you didn't disclose something. I know people who have been dropped from their health insurance after years of paying because they forgot to disclose a previous injury. I should add they got dropped when they had a claim. That means the insurance happily took their money until it was time to pay up.
- Real_S 8y ago
  And this affects life insurance, so you wont be alive when they dispute your claim!
- eli 8y ago
  I'm pretty confident that I answered every question accurately and that no answers would have changed based on anything I could have learned from a genetic test. Health insurers were really bad about "prior conditions" before Obamacare. I think life insurance has always been more tightly regulated. FWIW, my policy says the insurer can only challenge the application within the first two years.
  - maxxxxx 8y ago
    "Health insurers were really bad about "prior conditions" before Obamacare" It's good to know that the current administration is determined to take us back to those glory days :)

teeray 8y ago

> “If you apply for life insurance they do have a right to get all your medical records. And if you’ve had a genetic test taken, they do have a right to request it” This data isn't something an individual has full control over. What if one of your relatives took a genetic test? If that relative was denied for a policy on genetic test grounds, can you be denied for the same reasons?

bilbo0s 8y ago
Probably, but why would anyone in your family be disclosing their genetic profile when your family knows it has these sorts of things sitting in their DNA? I mean, if you're in a family where a lot of people get certain cancers, or congenital heart defects are common - well - exercise a little common sense and forego any DNA testing that Ancestry.com offers you.
- throwawaymath 8y ago
  Doesn't it seem unrealistic to you to rely on your extended family members not to disclose that information? Whatever you personally believe is "common sense", your family might not have it - or they might simply disagree with you.
- darpa_escapee 8y ago
  Nothing about this commercial[1] suggests there are privacy concerns or serious consequences when it comes to sharing DNA information with Ancestry.com. Common sense would be wrong in this case. Common sense would say that intimately private genetic information would be protected and not shared with anyone willing to throw ten cents Ancestry.com's way, lest there be lawsuits and fines. Often, this type of service is pitched to those with disease that runs in their family. Wouldn't you want your family member to know if they're affected so they can adequately treat disease before it becomes unmanageable? [1] https://www.youtube.com/watch?v=Yfz2KJQvH-0 https://www.youtube.com/watch?v=Yfz2KJQvH-0

chabsf 8y ago

The whole point of insurance is to distribute risk. At some point, if coverage granularity becomes too high, insurance will just become pointless, right?

ajmurmann 8y ago
I think it's more subtle than that. It's also about symmetry of information. If you for example do 23&me you might find it that you have a much increased likelihood of getting a fatal disease soon. Thinking about your family's financial future you might decide to get life insurance because of this new information. Your individual risk in this case is very different from the average, you know this and that's why you are getting the insurance. This scenario if it became common also would break the insurance model because the insured pool suddenly wouldn't include people with average risk but tend towards higher risk. This would lead to higher cost for everyone who is insured. In an extreme scenario the cost might get so high that it only makes sense to get life insurance for people who know they are likely to die soon. Of course the likely scenario is less extreme, but this shows the principle nicely.
- emiliobumachar 8y ago
  Very well put. Systematizing the algorithm, we have: 1) Get tested 2) Use the test results to determine the actuarial value of your hypothetical life insurance 3) If the price is less than the value, buy the insurance. If not, don't buy.
  - solotronics 8y ago
    you could actually turn this into a business model
emiliobumachar 8y ago
I don't think so, no. If I know for a fact that someone has a 40% chance of dying tomorrow, it still makes sense for me to sell them insurance valid tomorrow only, charging 40% of payout plus some margin. It also probably makes sense for them to buy it, to guarantee the higher payout for their family if they die.

jbattle 8y ago

(US perspective) I've wondered if for-profit insurance as we know it can survive changes in advances in actuarial science & related fields. As I understand it, the entire concept of insurance is based around gathering relatively large groups of people with a solid understanding of their average risks for certain types of loss. Given the averages hold accurate over time, those that need a payout can get one, and the insurance company makes money in aggregate. However, the better the insurance companies can understand our risk profiles as individuals (going well beyond age/sex/smoking/etc/etc/etc) - eventually (in theory) a motivated insurance company is going to be able to determine that I have a 90% chance of developing Serious Syndrome X while you have a 97% chance of developing Minor Issue Y. Today we might get put into the risk pool. But as the science advances, the risk pools can be cut into finer and finer (and more accurate) risk pools. Why should a profit-seeking insurance company insure me past some point when the data strongly indicates i'm going to need drastic and expensive intervention. It seems like the three ways to avoid this are: 1. "Advances" like the one mentioned here don't turn out to have enough predictive power and insurance continues to operate much as before 2. Some people just can't get for-profit insurance, at least not for health coverage (I'd think accidents will always remain much harder to predict than e.g. heart disease). Pushing them into some kind of not-for-profit 3. Regulation forces blinders on to underwriters essentially saying "actuarial science advances to here and no further"

klodolph 8y ago
I don't think that's how risk pools work in the first place. The idea is not to put people with similar levels of risk in the same pool. The idea is to make the pool as large as possible, charge everyone for their expected cost + a margin, and then pay out everyone for their actual costs. It's the law of large numbers at work here. Take the mean value of a large number of variables with high variance and you end up with a mean that has low variance. Not only is it normal for people with condition X to be in the same pool as condition Y, but this is a good thing because the costs for people with condition X are less correlated with the costs for people with condition Y, and this reduces risk in the pool. For example, if you have a pool that only contains people with condition X, and then it turns out that a commonly used medication prescribed for condition X has horrible side effects, then that single problem is disastrous for the entire pool. > Why should a profit-seeking insurance company insure me past some point when the data strongly indicates i'm going to need drastic and expensive intervention. Because you pass laws that make it illegal for insurance companies to deny coverage on this basis, and then you turn around and pass laws to keep the pool healthy enough for insurance to still be profitable. Or you just nationalize it.

laken 8y ago

The upsetting thing with this whole "paying for the privilege of giving someone else your DNA" trend, is that even if you are opposed to it, relatives of yours essentially give your data too. For example, apparently, both my mother and father have already sent off their DNA to these various ancestry companies, which by extension means that I'm also in there, albeit slightly detached.

blitmap 8y ago
I dislike this too. It's like someone licensed your IP and gave it away freely to ancestry.com. The metaphor doesn't really fit if you are the derivative child, but yeah... the insurance companies would already be able to make predictions about me.
bumholio 8y ago
Sharing genes with other people has indeed been a source of headaches since the beginning of time (take, for example, the whole Garden of Eden fiasco). Luckily, the advantages of being inside the genetic group, like say inheritance, usually outweigh the nuisance.
- deleted 8y ago
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Real_S 8y ago

Also, before you send your DNA off... Keep in mind that these companies are not legally allowed to delete your data. https://www.bloomberg.com/news/articles/2018-06-15/deleting-your-online-dna-data-is-brutally-difficult https://www.bloomberg.com/news/articles/2018-06-15/deleting-...

howard941 8y ago
FTA: "It’s a lesson we’re destined to keep learning: Once you share something online, you can’t really ever unshare it." Your genetic info is sort of like a trade secret in the USA, but without criminal sanctions when it's wrongfully appropriated.
djrogers 8y ago
Your claim contradicts both the article you linked to and the privacy policies of companies such as 23&Me and AncestryDNA per TFA.

aiCeivi9 8y ago

Wasn't there a novel, like 20 years ago, about insurance company having to hide massive profits from using DNA profiling? Does anybody remember its title? It looks like real life has catched up with fiction.

swebs 8y ago

Out of curiosity, how hard would it be to make an open-source, home ancestry test? Assuming that all the necessary data is there, which equipment would you need to sequence your DNA?

namibj 8y ago
Start in the high 4 digits. If you're lucky.

rrherr 8y ago

From The End of Asymmetric Information by Alex Tabarrok & Tyler Cowen: The actual problems with health insurance markets have less to do with information asymmetry and adverse selection than with too much information. That can make some people’s insurance very expensive at actuarially sound rates. For instance if you have a cancer of a given kind, this is verifiable to the outside world, and if the treatment costs are $200,000, the cost of an insurance policy will in turn be about $200,000. Buying the policy won’t be cheaper than buying the treatments, and in that sense the market for insurance is not always present. That is a very real public policy problem … The cheap sequencing of the genome may accelerate and intensify these issues. … https://www.cato-unbound.org/2015/04/06/alex-tabarrok-tyler-cowen/end-asymmetric-information https://www.cato-unbound.org/2015/04/06/alex-tabarrok-tyler-...

otakucode 8y ago

I literally got my DNA run now because I have real concern that in the future if you ever get it sequenced you will be legally required to share it with insurance companies, law enforcement, and many others. I'm hoping that I'll be able to get grandfathered in and not share mine.

rflrob 8y ago

The article does obliquely reference the Genetic Information Nondiscrimination Act (GINA), but then says it can be changed. This law was passed in 2008, for the most part before the rise of consumer ancestry tests. It seems unlikely to me that a major rollback of protections on these data is going to be easy to pass.

_rpd 8y ago
https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim... Interesting, I'd like to read more commentary on this act. Anyone?

jobigoud 8y ago

Could one poison the records by sending multiple samples of different blood sources attached to the same name? So the database query would'nt be conclusive, but you would know which test is legit. How would the ancestry testers react if I sent several samples in my name? Will there be a market for clean blood that you can use to confuse the records and get a sort of plausible deniability of identity?

LinuxBender 8y ago

This was already happening in 1994. I brought this issue up to my squadron commander regarding DNA samples the military was attempting to gather from everyone. He said, "What, are you afraid we are going to clone you?" To which I said, "No sir, you should be afraid if you cloned me." and we both had a chuckle because we both know I was right. I explained that insurance companies had already been denying claims for people laid up in the hospital based on "pre existing risk" that they might be at risk for getting cancer or becoming an alcoholic. He had me submit a FOIA request which bought me some time. It went all the way to Al Gore. I received boxes of paperwork that essentially amounted to "The Chief Medical Officer can decide what to do with DNA information and how it is managed." That bought me enough time to hit my four years and get out without having to challenge them in court. I never gave them any samples and I do not regret my actions.

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neverminder 8y ago

There's a simple anonymity hack, unless of course your relatives "out" you. I bought my 23andme kit from Amazon, then registered on 23andme website with a fake name. I have my results, but as far as 23andme are concerned I'm John Smith.

phyzome 8y ago
I was going to do this, but someone said that 23andme also takes a survey of family history, health, and demographic information—which is then used for actual research. I don't want to pollute data used for scientific research! How recently did you do this, and was there any information collection like that?
- neverminder 8y ago
  I did this a few months ago, but I'm pretty sure the survey you mentioned is optional, at least I don't remember doing it, so you don't necessarily have to "pollute data".
  - phyzome 8y ago
    Sweet! And does the kit have any sort of identifier with it? If so, I was considering some sort of 23andme kit remixing service, where people pool funds to buy a bunch of kits, and then randomly select a kit from the shipment. :-)
    - neverminder 8y ago
      Just get it from Amazon, the packaging doesn't have any unique identifiers like serial number, so if you register with fake name/email on 23andme - you're totally anonymous.
- PurpleBoxDragon 8y ago
  By choosing to not get a DNA test at all due to privacy concerns, didn't you also pollute the data, albeit in a different way? 23andme data will vastly under-represent people with strong privacy concerns which might have a future impact, especially if scientists using this data forget to take it into account.

djrogers 8y ago

Important point from teh article that about half of the posts here seem to have missed - this is not about health insurance, but life insurance. "while health insurers may not use or consider genetic test results when selling a policy, companies that sell life insurance, can."

magduf 8y ago

As a person who isn't old, lives below his means, and doesn't have children, I don't see the problem here. From my perspective, life insurance is nothing but a big scam. I don't anticipate dying any time soon, and if I do, I don't have any younger heirs. If I want to build wealth, I can do a lot better with index funds and mutual funds. Honestly, I just don't see the point of life insurance at all, unless someone has a family with children and doesn't have any significant wealth accumulated.

solotronics 8y ago
I think most people have a very minimal amount of capital accumulated. Life insurance exists to help their family not starve if they unexpectedly die. Its opt in which totally makes sense to me. I pay for it because it costs basically nothing for me as a healthy young person and it would provide a nice windfall for my girlfriend if for example my plane fell out of the sky.
- perl4ever 8y ago
  We have survivors' benefits from Social Security in the US. The logical thing to do, from my perspective, would be to make the existing government program designed to insure everyone cover people sufficiently. Given that baseline, the market for life insurance doesn't matter so much.

CNJ7654 8y ago

This was a genuine concern of mine when getting a 23andme test done. I can't know for certain, but using the alias Steven Stromboli and shipping the test kit from my workplace (my name isn't on the return address) should have been enough to keep them from assigning a dna profile to me as a person

safgasCVS 8y ago

This just makes me want to watch Gattaca again