9 ms·

I don't understand these concerns. I have published my data from 23andMe (https://enki.org/2017/10/17/publishing-my-genome/ https://enki.org/2017/10/17/publishi

I don't understand these concerns. I have published my data from 23andMe (https://enki.org/2017/10/17/publishing-my-genome/ https://enki.org/2017/10/17/publishing-my-genome/) (https://github.com/mcculley/genes-genes https://github.com/mcculley/genes-genes). Can you share what you think the bad outcomes would be? What am I missing? Edit: As people bring up the insurance risk, yes I did consider that and mention it in my post. I am personally not concerned about it and think the advantages outweigh the risk. Besides, I think insurances companies are going to have all the data soon anyway. If every time I get a blood test, they have a chance to capture my DNA, how can I stop them?

ryanmerket 8y ago
Don’t you think insurance companies might want that data to price your coverage for their optimal margins?
- mcculley 8y ago
  Yes, I mention this in my post.
mattnewton 8y ago
Insurance is the first one that pops into my mind. That kind of data changes their bet on your risks heavily into their favor and can disadvantage you if your genes show anything corroleated with late onset diseases. Depending on how this information is regulated, it could also affect the insurance for your biological children. For more hypothetical societal risks, I’ll cite the movie Gattica where DNA credentialism has created an underclass of people who can’t afford genetic manipulation at birth of their children. If your DNA is found wanting in that society it could be used against you in job applications, rental applications, etc. Currently (IANAL) but I don’t think this would be legal, but once your information is out there, it’s rather hard to bottle back up.
- mcculley 8y ago
  I mention the insurance risk in my post. Yes, I do think insurance companies will try to use this data. I don't see how to avoid it though. It seems to me that it is inevitable that they will get my DNA at some point. That said, I buy insurance for the unknown risks. If I had a known condition, I would expect that to be factored into the price.
  - mattnewton 8y ago
    “The insurance companies will eventually win this from us” is different from it currently being required. I will read your post but I don’t buy the inevitability that they will win over reasonable privacy rights. Insurance only works as a system for society if the risk is spread among many parties, but if the insurance companies know the risk ahead of time it ceases to subsidize the unfortunate, who are left out in the cold (taxpayer funded programs and hospital ERS)
    - mcculley 8y ago
      I don't think it is just insurance companies who will eventually win. I think everyone will have everybody's DNA. People who have serious disabilities should be supported by taxpayer funded programs, in my opinion.
      - mattnewton 8y ago
        Then the taxpayer should be capturing all the value the insurance companies provide. If they are only insuring the wealthy and healthy and the government pays for the rest, that’s a rather raw deal for the taxpayer. Also I hope you never have my DNA. I can’t think of a reason why you should, and for one possible exercise on why you shouldn’t, please watch Gattaca.
        mcculley 8y ago
        I actually think that basic health care should be covered by taxpayers and we should not have private insurance companies profiting in that space. As for your DNA: Do you take the precautions of the protagonist in Gattaca? How do you avoid leaving DNA samples in public places? How long before drones/bots/Roombas are hoovering this up at the behest of some VC?
- dragonwriter 8y ago
  > Currently (IANAL) but I don’t think this would be legal Currently, it's explicitly illegal under US federal law, but there is also a full-frontal assault going on against consumer protections in the health insurance market in the federal government, so absent a significant change in government direction, I wouldn't bet on it staying that way.
- gbrown 8y ago
  Another worry is that there are already lots of companies willing to sell predictive indices for consumers. I could easily imagine "data laundering" where the genetic information is condensed, along with other social and demographic information, into risk indices which are not obviously labeled as containing genetic data. If an insurance company uses a vended solution like this, it would be harder to trace, and may introduce legal complications.
throwaway1zz 8y ago
Primary concern is declining insurance coverage, unless 23 and me allows for a anonymous no name test?
- distant_hat 8y ago
  de anonymizing genetic data is not that hard. Also, if your relatives opt for it, they can still get a pretty decent picture of your genome so not going for it doesn't necessarily mean you are protected.
breck 8y ago
I’ve also done 23andme and am open about my data. I can think of about 3 negative outcomes (maybe insurance problems that could occur without regulation; family privacy issues if someone wanted to track you or a family member down; annoying advertising), and about 1,000 positive outcomes (contributing data to help cure cancer, predict disease susceptibility, drug response, improve general health and wellness, et cetera...). I think the pros far outweigh the cons. Sure, 23andme and GSK and others will get richer off this but so what—they are doing something good.
- paxy 8y ago
  Plus the negative effects need to be mitigated by legislation (and to a great extent already are) rather than secrecy.
- ryanisnan 8y ago
  Oh come on, don't straw man the actual issues. Nobody is worried about GSK getting rich, but are worried about actual issues like insurance discrimination, loss of privacy, loss of control, etc. I think few people would argue against the benefits of genetic testing, but just because it's a great thing doesn't mean that being complacent around adjacent shady business transactions is the right approach. You can be for it, but also for privacy, protection against insurance discrimination, etc. at the same time.
  - Karunamon 8y ago
    Insurance discrimination is explicitly prohibited by law, and your genetic makeup is about the least private and controllable thing about you since you leave bits of it everywhere you go whether you want to or not.
    - what_ever 8y ago
      Insurance discrimination is explicitly prohibited by law, >>TODAY<<
    - ryanisnan 8y ago
nradov 8y ago
In the USA the Genetic Information Nondiscrimination Act of 2008 explicitly prohibits discrimination on the basis of genetic information with respect to health insurance and employment. No one in politically powerful positions has seriously advocated for repealing the law. The insurance companies don't even dislike it because it creates a level playing field; since the market is competitive, even if they were allowed to price health insurance based on genetic risk factors it wouldn't necessarily allow them to earn higher profits. https://www.eeoc.gov/laws/statutes/gina.cfm https://www.eeoc.gov/laws/statutes/gina.cfm
- c2h5oh 8y ago
  Would that act cover things like targeting health insurance ads based on genetic traits? How about displaying recruitment ads to people with lactose tolerance gene, effectively excluding most of worlds non-white population?
  - hunter2_ 8y ago
    Not sure about other areas, but in my state "Genetic Information" is among the protected classes with which you may not discriminate regarding employment. Although it's allowed for housing, credit, etc. when race et al are not, which is quite peculiar. https://www.nj.gov/oag/dcr/law.html https://www.nj.gov/oag/dcr/law.html
    - c2h5oh 8y ago
      Federal (GINA): > It shall be an unlawful employment practice for an employer-- (1) to fail or refuse to hire, or to discharge, any employee, or otherwise to discriminate against any employee with respect to the compensation, terms, conditions, or privileges of employment of the employee, because of genetic information with respect to the employee; No job advertising protection there NJ (LAD): > It shall be an unlawful employment practice, or, as the case may be, an unlawful discrimination: a.For an employer, because of [..], genetic information, [..] to refuse to hire or employ or to bar or to discharge or require to retire, unless justified by lawful considerations other than age, from employment such individual or to discriminate against such individual in compensation or in terms, conditions or privileges of employment; Nope, nothing there either about recruitment ads..
howderek 8y ago
Are you part of the Personal Genome Project? It's a large community of people who share their genetic data for science. http://www.personalgenomes.org/us http://www.personalgenomes.org/us
- mcculley 8y ago
  I was not aware. Thank you for bringing it to my attention.
  - ars 8y ago
    Also sign up for this: https://allofus.nih.gov/ https://allofus.nih.gov/
2close4comfort 8y ago
Wait until you will have to wait for your insurance to run a viability test of an experimental cancer drug for your dying loved one, and seeing to denied due to a low probably of success. But by then it will be too late wont it. Given its ties to Google they have the data already anyway...I am sure a search is part of the HR process.
- refurb 8y ago
  That's already being done. Unless you have certain genetic markers in your tumor, insurance will deny certain therapies since they are unlikely to work. Why is that bad?
  - HarryHirsch 8y ago
    The insurance carrier has a conflict of interest. Over in Europe they have public bodies issuing treatment guidelines, but that would be a political impossibility in the US.
    - refurb 8y ago
      How is it any different in Europe? They make the exact same decisions. US insurance companies use treatment guidelines issued by organizations like NCCN (oncology). If they stray too far, they get dinged for not meeting "medical necessity" requirements. If anything, you're more likely to get an experimental cancer drug in the US than Europe since US insurance companies don't like bad press.
    - SmellyGeekBoy 8y ago
      As far as I know the UK is in Europe, and my father has recently been denied cancer treatment by multiple providers due to a low probability of success. That's by the NHS and a few private providers. The argument is that he'll have a better quality of life if he doesn't spend the rest of the time he has left going through pointless treatments that won't help anyway, an argument our family didn't initially accept but are certainly coming to terms with.
js2 8y ago
There's always the risk that a psychopath will create a neutered copy of you inside a virtual Star Trek inspired simulation.
palisade 8y ago
Untraceable assassination.
dilippkumar 8y ago
This talk[0] makes a very good case for why keeping your DNA a secret is a good idea. It's also probably the only talk at defcon that I've watched that has scared the hell out of me. [0]https://www.youtube.com/watch?v=HKQDSgBHPfY https://www.youtube.com/watch?v=HKQDSgBHPfY
- mcculley 8y ago
  That is a great talk! Thank you for posting it. This is the caliber of counterargument that I was looking for. I had addressed in my post ("maybe ... somebody figures out a way to target me directly with a personalized disease"). I have added a link to it in my post.

ryanmerket 8y ago

Don’t you think insurance companies might want that data to price your coverage for their optimal margins?

mcculley 8y ago
Yes, I mention this in my post.

mattnewton 8y ago

Insurance is the first one that pops into my mind. That kind of data changes their bet on your risks heavily into their favor and can disadvantage you if your genes show anything corroleated with late onset diseases. Depending on how this information is regulated, it could also affect the insurance for your biological children. For more hypothetical societal risks, I’ll cite the movie Gattica where DNA credentialism has created an underclass of people who can’t afford genetic manipulation at birth of their children. If your DNA is found wanting in that society it could be used against you in job applications, rental applications, etc. Currently (IANAL) but I don’t think this would be legal, but once your information is out there, it’s rather hard to bottle back up.

mcculley 8y ago
I mention the insurance risk in my post. Yes, I do think insurance companies will try to use this data. I don't see how to avoid it though. It seems to me that it is inevitable that they will get my DNA at some point. That said, I buy insurance for the unknown risks. If I had a known condition, I would expect that to be factored into the price.
- mattnewton 8y ago
  “The insurance companies will eventually win this from us” is different from it currently being required. I will read your post but I don’t buy the inevitability that they will win over reasonable privacy rights. Insurance only works as a system for society if the risk is spread among many parties, but if the insurance companies know the risk ahead of time it ceases to subsidize the unfortunate, who are left out in the cold (taxpayer funded programs and hospital ERS)
  - mcculley 8y ago
    I don't think it is just insurance companies who will eventually win. I think everyone will have everybody's DNA. People who have serious disabilities should be supported by taxpayer funded programs, in my opinion.
    - mattnewton 8y ago
      Then the taxpayer should be capturing all the value the insurance companies provide. If they are only insuring the wealthy and healthy and the government pays for the rest, that’s a rather raw deal for the taxpayer. Also I hope you never have my DNA. I can’t think of a reason why you should, and for one possible exercise on why you shouldn’t, please watch Gattaca.
      - mcculley 8y ago
        I actually think that basic health care should be covered by taxpayers and we should not have private insurance companies profiting in that space. As for your DNA: Do you take the precautions of the protagonist in Gattaca? How do you avoid leaving DNA samples in public places? How long before drones/bots/Roombas are hoovering this up at the behest of some VC?
dragonwriter 8y ago
> Currently (IANAL) but I don’t think this would be legal Currently, it's explicitly illegal under US federal law, but there is also a full-frontal assault going on against consumer protections in the health insurance market in the federal government, so absent a significant change in government direction, I wouldn't bet on it staying that way.
gbrown 8y ago
Another worry is that there are already lots of companies willing to sell predictive indices for consumers. I could easily imagine "data laundering" where the genetic information is condensed, along with other social and demographic information, into risk indices which are not obviously labeled as containing genetic data. If an insurance company uses a vended solution like this, it would be harder to trace, and may introduce legal complications.

throwaway1zz 8y ago

Primary concern is declining insurance coverage, unless 23 and me allows for a anonymous no name test?

distant_hat 8y ago
de anonymizing genetic data is not that hard. Also, if your relatives opt for it, they can still get a pretty decent picture of your genome so not going for it doesn't necessarily mean you are protected.

breck 8y ago

I’ve also done 23andme and am open about my data. I can think of about 3 negative outcomes (maybe insurance problems that could occur without regulation; family privacy issues if someone wanted to track you or a family member down; annoying advertising), and about 1,000 positive outcomes (contributing data to help cure cancer, predict disease susceptibility, drug response, improve general health and wellness, et cetera...). I think the pros far outweigh the cons. Sure, 23andme and GSK and others will get richer off this but so what—they are doing something good.

paxy 8y ago
Plus the negative effects need to be mitigated by legislation (and to a great extent already are) rather than secrecy.
ryanisnan 8y ago
Oh come on, don't straw man the actual issues. Nobody is worried about GSK getting rich, but are worried about actual issues like insurance discrimination, loss of privacy, loss of control, etc. I think few people would argue against the benefits of genetic testing, but just because it's a great thing doesn't mean that being complacent around adjacent shady business transactions is the right approach. You can be for it, but also for privacy, protection against insurance discrimination, etc. at the same time.
- Karunamon 8y ago
  Insurance discrimination is explicitly prohibited by law, and your genetic makeup is about the least private and controllable thing about you since you leave bits of it everywhere you go whether you want to or not.
  - what_ever 8y ago
    Insurance discrimination is explicitly prohibited by law, >>TODAY<<
  - ryanisnan 8y ago

nradov 8y ago

In the USA the Genetic Information Nondiscrimination Act of 2008 explicitly prohibits discrimination on the basis of genetic information with respect to health insurance and employment. No one in politically powerful positions has seriously advocated for repealing the law. The insurance companies don't even dislike it because it creates a level playing field; since the market is competitive, even if they were allowed to price health insurance based on genetic risk factors it wouldn't necessarily allow them to earn higher profits. https://www.eeoc.gov/laws/statutes/gina.cfm https://www.eeoc.gov/laws/statutes/gina.cfm

c2h5oh 8y ago
Would that act cover things like targeting health insurance ads based on genetic traits? How about displaying recruitment ads to people with lactose tolerance gene, effectively excluding most of worlds non-white population?
- hunter2_ 8y ago
  Not sure about other areas, but in my state "Genetic Information" is among the protected classes with which you may not discriminate regarding employment. Although it's allowed for housing, credit, etc. when race et al are not, which is quite peculiar. https://www.nj.gov/oag/dcr/law.html https://www.nj.gov/oag/dcr/law.html
  - c2h5oh 8y ago
    Federal (GINA): > It shall be an unlawful employment practice for an employer-- (1) to fail or refuse to hire, or to discharge, any employee, or otherwise to discriminate against any employee with respect to the compensation, terms, conditions, or privileges of employment of the employee, because of genetic information with respect to the employee; No job advertising protection there NJ (LAD): > It shall be an unlawful employment practice, or, as the case may be, an unlawful discrimination: a.For an employer, because of [..], genetic information, [..] to refuse to hire or employ or to bar or to discharge or require to retire, unless justified by lawful considerations other than age, from employment such individual or to discriminate against such individual in compensation or in terms, conditions or privileges of employment; Nope, nothing there either about recruitment ads..

howderek 8y ago

Are you part of the Personal Genome Project? It's a large community of people who share their genetic data for science. http://www.personalgenomes.org/us http://www.personalgenomes.org/us

mcculley 8y ago
I was not aware. Thank you for bringing it to my attention.
- ars 8y ago
  Also sign up for this: https://allofus.nih.gov/ https://allofus.nih.gov/

2close4comfort 8y ago

Wait until you will have to wait for your insurance to run a viability test of an experimental cancer drug for your dying loved one, and seeing to denied due to a low probably of success. But by then it will be too late wont it. Given its ties to Google they have the data already anyway...I am sure a search is part of the HR process.

refurb 8y ago
That's already being done. Unless you have certain genetic markers in your tumor, insurance will deny certain therapies since they are unlikely to work. Why is that bad?
- HarryHirsch 8y ago
  The insurance carrier has a conflict of interest. Over in Europe they have public bodies issuing treatment guidelines, but that would be a political impossibility in the US.
  - refurb 8y ago
    How is it any different in Europe? They make the exact same decisions. US insurance companies use treatment guidelines issued by organizations like NCCN (oncology). If they stray too far, they get dinged for not meeting "medical necessity" requirements. If anything, you're more likely to get an experimental cancer drug in the US than Europe since US insurance companies don't like bad press.
  - SmellyGeekBoy 8y ago
    As far as I know the UK is in Europe, and my father has recently been denied cancer treatment by multiple providers due to a low probability of success. That's by the NHS and a few private providers. The argument is that he'll have a better quality of life if he doesn't spend the rest of the time he has left going through pointless treatments that won't help anyway, an argument our family didn't initially accept but are certainly coming to terms with.

js2 8y ago

There's always the risk that a psychopath will create a neutered copy of you inside a virtual Star Trek inspired simulation.

palisade 8y ago

Untraceable assassination.

dilippkumar 8y ago

This talk[0] makes a very good case for why keeping your DNA a secret is a good idea. It's also probably the only talk at defcon that I've watched that has scared the hell out of me. [0]https://www.youtube.com/watch?v=HKQDSgBHPfY https://www.youtube.com/watch?v=HKQDSgBHPfY

mcculley 8y ago
That is a great talk! Thank you for posting it. This is the caliber of counterargument that I was looking for. I had addressed in my post ("maybe ... somebody figures out a way to target me directly with a personalized disease"). I have added a link to it in my post.