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Comment by mcculley | Hacker News Reader

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

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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

the Genetic Information Nondiscrimination Act of 2008 explicitly prohibits discrimination on the basis of genetic information

There are laws against age, race, and other discrimination in employment. But it still happens, and in some industries in widespread.

Greed finds a way. Your point is moot.

This is true for health insurance; not so for life insurance.

What’s wrong with a life insurance company getting a more accurate probability of me dying from some rare disease? Maybe my rates should be raised if there’s a higher risk of me kicking the bucket. This works both ways too - my DNA can reveal that I will likely live a long premium-paying life. Insurance companies make money by being accurate, not by under or overestimating the risks. If DNA helps them be more accurate, good, maybe you can receive some of that value from improved efficiency.

Well, shucks, why not apply the exact same argument to health insurance as well? Or even auto insurance?

While adverse selection is undeniably a tricky problem, the underlying raison d'etre is pooled risk, to help individuals and families mitigate catastrophic losses. Maybe you're all right with the prospect of future analyses condemning to uninsurability folks with rare combinations of alleles that turn out to be strongly deleterious. To me, this seems like breaking the regulated semi-statis between insurers and insureds, and like breaking the social contract more generally.

If you are referring to the situation in the United States, where health care is managed mostly by private health insurance, it is already a terrible social contract.

The whole system is going to have to adapt to more information on individuals being available.

Perhaps the insurance company will not give you an insurance at all if you are deemed a high enough genetic risk. Perhaps, while the main disease works its way, you will not be covered for the side effects (like pneumonia) either, as you have no insurance.

This might or might not be an issue now (regardless of the place of residence), but laws can always be changed. And societies can always develop to be more totalitarist, even up to extremes, and it is not like the collected data just vanishes when things start to slide. (Case in point: IBM's Hollerith machines and population records)

I was very curious about 23andme and really wanted to try it. After some due diligence I concluded it is not worth it because of privacy and other implications going forward. It is not what they do today, since they don't hide the obvious sharing and datamining, so if one joins them it is through informed consent. My concern was rather what kind of systems and policies they enable eventually in the future, after the information gets sold/shared enough times to anyone who can pay enough. At this point there is no control anymore in how (and by whom) the data gets used.

How long do you think you will be able to keep your genome private?

Given that it is immaterial property which belongs to me, I should be able to hold on to it as long as I want?

How do you avoid leaving physical copies of it when you go out in public? Do you think there will not be technology to easily collect it?

> even if they were allowed to price health insurance based on genetic risk factors it wouldn't necessarily allow them to earn higher profits.

Cue adverse selection. They might not be allowed to collect genetic data, but nothing stops patients from doing their own sequencing, and shop for healthcare plans depending on their predispositions, thus drastically affecting healthcare profitability.

This is not a pervasive problem yet because the tests are pretty crappy and very few people bother, but on the long run, I bet your "level playing field" hypothesis will be debated.

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?

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

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..

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.

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.

If I cared about privacy I wouldn’t have had 23andme and the Personal Genome Project do my genotyping. While it may affect me negatively in the future, the net positive (in aggregate with all participants) will exceed that negative value.

I’m dead in the long run regardless, and would rather find every way I can be impactful with the time I have left, even in these small ways.

Have you considered the impact on your relatives and descendants? They may care more about their privacy than you care about yours, and when you get sequenced they don't have a choice.

I have considered the ethical issues. Not my problem, it’s my DNA.

The problem is, it's also theirs. Using the insurance example, even if you live in a country with socialized healthcare someone down or across the line from you may not. Indeed, you would be putting them at risk for all of the bad things to do with DNA that will be or were invented from fifty years ago until the computers forget your genome, without their consent, and unless they received a copy of your results without their benefit!

It’s a legitimate concern that requires constant vigilance of an educated and engaged electorate. Otherwise we’ll end up paralyzed with anxiety of what if vs progress.

The two things should not be mutually exclusive (privacy and technological advancement). Why do you lay over and just accept that it has to be that way?

Because I don’t feel my genome data needs to be private, or that there is value in keeping it private.

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.

Insurance discrimination is explicitly prohibited by law, >>TODAY<<

Except it happens all the time.

Another way they could abuse this would be to find some loosely genetic-based "treatment" that just so happens to require expensive DNA tests. I'm sure it's more profitable to use the universal fear of cancer to sell tests than it is to actually attack cancerous cells directly.

Plenty of other risks. Once you get into the X million+ sample ranges false positives for paternity tests or criminal cases become likely.

10 million tests vs 10 million person database means 1 in 10 trillion false positives happen 10 times.

That's not how it works, the chances of two people matching as identical (on the SNP tested by 23andme) by random is astronomically low - orders of magnitude higher than the total number of humans who've ever lived.

Generally at a 7cM overlap you have 50:50 chance whether you're related to that person or not. Anything over say 150cM you're virtually certain to be related (ignoring endogamous populations). At 3,400cM (full-match) it's not even worth considering randomness.

You’re assuming a lot with those statistics.

Paternity tests involve random ~50% of your dna. Sperm samples are generally contaminated and thus less clear cut. But, people’s relatives have been used in the past for these tests dropping the bar even further.

However, being related genetically is not enough. Some people have twin siblings they don’t know about pointing out being related is not nessisarily mean you know anything about the other person allowing for false positives even at 3,400cM.

Unlikely sure, but harm comes in many forms. Saying I can’t think of anything is a long way from saying it’s safe.

Those aren't false positives in that they represent real genetic relationships (i.e they're identical by descent), as the database size increases you don't increase the false positive rate in any meaningful sense at higher match levels.

If you've got a identical twin then you're right that their child will be genetically indistinguishable from your child. But that's down to the nature of genetics rather than anything to do with the reliability of testing or database size.

False positives don't necessarily mean the test was executed incorrectly. It often means you are testing for something closely related to the information you want.

If a test failed because _ then it failed independent of why it failed. If your long lost twin causes you to be involved with a paternity suit or homicide investigation then that's both a false positive and a significant problem.

Why couldn't you run those tests several times?

These are not false positives, because you ran the test wrong.

Suppose a male with red hair, green eyes, and AB+ blood actually has those traits they are just not enough to unlikely identify someone. Adding more genetic traits on it's own is not enough for example you have identical twin or even triplet separated at birth. The core issue is DNA marks are not independent though people often assume they are.

Society will have to adapt to a better understanding that this is true. Keeping one’s DNA secret is not going to be a useful defense against ignorance of how DNA works.

Worked for the last 10,000+ years and still works today.

Sure, at some point in the future it might get fixed or always fail, but until then you need to deal with today not some mythical perfect future.

The last 10,000+ years has not been static from my perspective. Blood testing came along. Limited DNA testing came along after that. Perfect DNA testing will be here soon. The technology won't care how you feel about it being used. I'm not imagining a mythical perfect future. I'm imagining a very real future that we can't avoid and need to deal with more pragmatically.

Plus the negative effects need to be mitigated by legislation (and to a great extent already are) rather than secrecy.

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.

> 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.

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.

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.

“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)

Living in Sweden, this sounds like a US Only problem. Maybe the solution is tax-funded health care and let corporations do great things with the technology?

I buy that my concerns are colored by living in the US, but I actually cannot think of anyone other than my doctors who I want to know one base pair of my genetic code if it can ever be attached to my name. What are they possibly going to do with that information to benefit me? Insurance optimizations? Drug marketing? No thanks.

I’d make an exception for science if and only if it’s full deanonymized and controlled by a nonprofit third party entity.

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.

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.

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?

It sounds like we are in violent agreement then: if insurance companies are allowed to exist the way they do today, they can’t have access to all the information. I like your solution to the dilemma of just not having private insurance companies :D

Re DNA precautions: We just need to make hovering up DNA illegal, or selling insurance, or selling anything based on the genetic information gathered from people; make it all illegal, so I don’t have to worry about it in the same way I don’t have to worry about insurance companies breaking into my house to spy on me.

I don't see how making collection of DNA data illegal could be enforced. It seems inevitable to me that such data will be widely available.

>I actually think that basic health care should be covered by taxpayers and we should not have private insurance companies profiting in that space.

What happens when someone gets their genetic information released in a country with public healthcare, and then moves to a country with private healthcare?

I expect that to be an adverse and inevitable outcome.

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

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.

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

I was not aware. Thank you for bringing it to my attention.

Also sign up for this: https://allofus.nih.gov/

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.

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?

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.

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.

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.

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

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.

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

Yes, I mention this in my post.

Untraceable assassination.

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

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