7 ms·

Look I know that much of HN has a libertarian and pro-corporation bias. But, I think the article is pretty specific about the profit motive being cause for conc

Look I know that much of HN has a libertarian and pro-corporation bias. But, I think the article is pretty specific about the profit motive being cause for concern. The California Board of Health reports, however indirectly, to the taxpayers. This accountability, however insignificant you may perceive it, is simply absent from 23andMe. To summarize your comparison: - 23andMe collects genomes to please their VC and Wall Street investors. - The CA government collects genomes to please the taxpayers. Be honest, and forget your bank account: who do you really trust more?

incongruity 13y ago
Moreover, if I understand the situation correctly, states aren't outright sequencing and compiling the full genome from each of those spots - instead, the blood spots themselves are being saved. That will make it signicantly harder to access and misuse the genetic data contained therein. 23andMe, on the other hand, has that data in a much much more accessible and centralized form, though it too doesn't fully sequence it. Yet. That's a big part of what makes it more dangerous than what the states are doing, I believe.
dreamdu5t 13y ago
23andMe. I don't have to give them my genome if I don't trust them.
- vwinsyee 13y ago
  As the article rightly notes: "...every one of your relatives who spits in a 23andMe vial is giving the company a not-inconsiderable bit of your own genetic information to the company along with their own. If you have several close relatives who are already in 23andMe’s database, the company already essentially has all that it needs to know about you."
  - dreamdu5t 13y ago
    The FDA's regulation doesn't stop that or have anything to do with that. I fail to see the problem with 23andMe. They provide testing for people who want to pay for it. FUD about building a massive database is kind of hard to take seriously when the NSA watches everything and the US government already builds DNA databases.
reginaldjcooper 13y ago
IMO both of you have good points. I would expect 23andMe to be doing some shady Facebook-esqe bullshit because of the profit motive and that is why I have never used them even though I am curious. I expect the state to be doing some shady Facebook-esqe bullshit because of "terrists" but I didn't have the option to not. So I can both be "at least as concerned about the State of California" and also be 100% against sending a swab to 23andMe. I trust neither more but with one of them I have control over their collection of my DNA.
deleted 13y ago
[deleted]
gojomo 13y ago
I do trust the profit motive of a small company, bound by various contracts and laws, public perception, and their own need for future customers to voluntarily opt-in, moreso than the state's shifting policies, pandering to the different fears of various eras. Even where the profit motive can lead to abuses, those abuses pale in comparison to the history of even very good governments. California is one of the most accountable governments in the world, but in the memory of its living residents has imposed both forced internment of its citizens by their ethnicity (WW2) and forced sterilization (until 1963). What future crime or health scares could lead to the repurposing of this broadly-collected state data? (It's quite hard to opt-out of this collection, whereas it's costly to opt-in to 23andMe's program.) And if state-repurposing happens, those who implement the change, perhaps including for-profit companies in partnership with the state, can be insulated from accountability, because when the state decides to do it, it is 'legal'. Perhaps you assign those scenarios much lower probability than the more common and mundane privacy abuses of profit-seeking sleazeballs. OK, fine. Still, the magnitude of damage the state can do, with its powers of compulsion and confiscation, is much larger. Fewer events, yes, but much worse when they happen. So if you're 'terrified' by the chance 23andMe might misuse voluntarily-offered genetic materials, against their own policies, state law, and customer preferences, you ought to reserve at least some fear as well for the danger from the much larger cache of genetic data, collected without explicit consent, already in the hands of an institution that – when it occasionally misfires – does more damage than any single company can.
- logjam 13y ago
  Really. You trust "profit motives". How adorable. But yet you couldn't find space above to relate for us all the charmingly ethical conduct of companies "bound by various contracts and laws, public perception, and their own needs for future customers"...companies like Union Carbide, Monsanto, Enron, Kerr-McGee, British Petroleum, Halliburton, FlowTex, Bayer etc etc ad infinitum. No thanks. 23andMe is yet another group of shady, for-profit slimeballs making money off people's fears, called out by the FDA for the same kind of arrogant adolescent libertarian horseshit that gave us Vioxx. And yeah, most of us actually prefer to deal with the "state's shifting policies" - you remember...the policies we vote on.
dreamfactory 13y ago
It doesn't really matter who is collecting. It's the aggregation and storage that is the root problem - because sooner or later that data will get into all the sufficiently determined wrong hands. If the NSA can't secure data or even know what has got out, California or 23andMe or Google have no chance. The problem we have is that it is now easier to collect everything than to be selective and this represents a huge risk to security down the line in all kinds of ways. You could say our data footprints have become a form of pollution. To mitigate we need to flip it and make non-collection the default - e.g. introduce strict regulations around destroying non-critical information with a very high bar for even temporary storage and anonymisation wherever possible.
- gojomo 13y ago
  But there are potentially immense health benefits from having the testing done, having it available for on-line consultation (by the individual and her chosen advisors), and continuing to re-test in greater resolution as technology advances. Do we just forgo all those benefits because of the risk of abuse or data compromise, by any entity anywhere down the line? Or do we try to figure out the right checks, both in practices and law, to maximize the benefit and minimize the risks? I'm for that iterative discovery of the right balance. And, I think a for-profit company operating under the microscope of consumer/journalist/regulator scrutiny is more likely to find the optimal tradeoffs than a compulsory state collection program, or other solely bureaucratic and legislative processes.
  - ewzimm 13y ago
    You have the right idea. It's important to remember what we'd want if we didn't have any concerns about power abuse. In a perfect world, anyone would be excited that some of the world's best scientists were studying the secrets of their body and would soon be able to offer them opportunities to take control of their health and ageing rather than leaving it to chance. Even better if an enormous sample was pooled for study. This is the only realistic way to move toward a complete understanding of how our bodies work. There are real potential abuses of privacy, but we shouldn't let those scare us into failing to progress. The fact is, you leave your genetic information everywhere you go. If any restaurant wanted to get into the DNA collection business, they would never run out of material. In the near future, I wouldn't be surprised if some people argued that any genetic material left at their business was their rightful property, and since you made no effort to hide the fact that you were eating off that particular fork, they shouldn't have to avert their eyes from your DNA or deny its association with you. Perhaps on your next visit to any chain restaurant, they could suggest a menu more appropriate to your specific health needs.
anonymoushn 13y ago
Is it reasonable to say that a government is more accountable to taxpayers than a company is to customers? If I am displeased with the policies of KillBrownPeopleOnTheOtherSideOfTheWorldCorp or TheKidnapPeopleWhoGrowFungusesCompany, I can just decide not to purchase their services. The process available in government is that I can vote to replace the person who oversees the policies, which will remain unchanged.
patrickg_zill 13y ago
When a baby is born in CA, do the parents have a choice, as to whether or not the blood sample is collected?
- gojomo 13y ago
  My understanding, from the 2nd link I included and other sources, is that parents can opt-out if they are insistent beforehand, and claim a religious exemption in writing. But they aren't specifically informed and asked before the blood sample is taken.

incongruity 13y ago

Moreover, if I understand the situation correctly, states aren't outright sequencing and compiling the full genome from each of those spots - instead, the blood spots themselves are being saved. That will make it signicantly harder to access and misuse the genetic data contained therein. 23andMe, on the other hand, has that data in a much much more accessible and centralized form, though it too doesn't fully sequence it. Yet. That's a big part of what makes it more dangerous than what the states are doing, I believe.

dreamdu5t 13y ago

23andMe. I don't have to give them my genome if I don't trust them.

vwinsyee 13y ago
As the article rightly notes: "...every one of your relatives who spits in a 23andMe vial is giving the company a not-inconsiderable bit of your own genetic information to the company along with their own. If you have several close relatives who are already in 23andMe’s database, the company already essentially has all that it needs to know about you."
- dreamdu5t 13y ago
  The FDA's regulation doesn't stop that or have anything to do with that. I fail to see the problem with 23andMe. They provide testing for people who want to pay for it. FUD about building a massive database is kind of hard to take seriously when the NSA watches everything and the US government already builds DNA databases.

reginaldjcooper 13y ago

IMO both of you have good points. I would expect 23andMe to be doing some shady Facebook-esqe bullshit because of the profit motive and that is why I have never used them even though I am curious. I expect the state to be doing some shady Facebook-esqe bullshit because of "terrists" but I didn't have the option to not. So I can both be "at least as concerned about the State of California" and also be 100% against sending a swab to 23andMe. I trust neither more but with one of them I have control over their collection of my DNA.

deleted 13y ago

[deleted]

gojomo 13y ago

I do trust the profit motive of a small company, bound by various contracts and laws, public perception, and their own need for future customers to voluntarily opt-in, moreso than the state's shifting policies, pandering to the different fears of various eras. Even where the profit motive can lead to abuses, those abuses pale in comparison to the history of even very good governments. California is one of the most accountable governments in the world, but in the memory of its living residents has imposed both forced internment of its citizens by their ethnicity (WW2) and forced sterilization (until 1963). What future crime or health scares could lead to the repurposing of this broadly-collected state data? (It's quite hard to opt-out of this collection, whereas it's costly to opt-in to 23andMe's program.) And if state-repurposing happens, those who implement the change, perhaps including for-profit companies in partnership with the state, can be insulated from accountability, because when the state decides to do it, it is 'legal'. Perhaps you assign those scenarios much lower probability than the more common and mundane privacy abuses of profit-seeking sleazeballs. OK, fine. Still, the magnitude of damage the state can do, with its powers of compulsion and confiscation, is much larger. Fewer events, yes, but much worse when they happen. So if you're 'terrified' by the chance 23andMe might misuse voluntarily-offered genetic materials, against their own policies, state law, and customer preferences, you ought to reserve at least some fear as well for the danger from the much larger cache of genetic data, collected without explicit consent, already in the hands of an institution that – when it occasionally misfires – does more damage than any single company can.

logjam 13y ago
Really. You trust "profit motives". How adorable. But yet you couldn't find space above to relate for us all the charmingly ethical conduct of companies "bound by various contracts and laws, public perception, and their own needs for future customers"...companies like Union Carbide, Monsanto, Enron, Kerr-McGee, British Petroleum, Halliburton, FlowTex, Bayer etc etc ad infinitum. No thanks. 23andMe is yet another group of shady, for-profit slimeballs making money off people's fears, called out by the FDA for the same kind of arrogant adolescent libertarian horseshit that gave us Vioxx. And yeah, most of us actually prefer to deal with the "state's shifting policies" - you remember...the policies we vote on.

dreamfactory 13y ago

It doesn't really matter who is collecting. It's the aggregation and storage that is the root problem - because sooner or later that data will get into all the sufficiently determined wrong hands. If the NSA can't secure data or even know what has got out, California or 23andMe or Google have no chance. The problem we have is that it is now easier to collect everything than to be selective and this represents a huge risk to security down the line in all kinds of ways. You could say our data footprints have become a form of pollution. To mitigate we need to flip it and make non-collection the default - e.g. introduce strict regulations around destroying non-critical information with a very high bar for even temporary storage and anonymisation wherever possible.

gojomo 13y ago
But there are potentially immense health benefits from having the testing done, having it available for on-line consultation (by the individual and her chosen advisors), and continuing to re-test in greater resolution as technology advances. Do we just forgo all those benefits because of the risk of abuse or data compromise, by any entity anywhere down the line? Or do we try to figure out the right checks, both in practices and law, to maximize the benefit and minimize the risks? I'm for that iterative discovery of the right balance. And, I think a for-profit company operating under the microscope of consumer/journalist/regulator scrutiny is more likely to find the optimal tradeoffs than a compulsory state collection program, or other solely bureaucratic and legislative processes.
- ewzimm 13y ago
  You have the right idea. It's important to remember what we'd want if we didn't have any concerns about power abuse. In a perfect world, anyone would be excited that some of the world's best scientists were studying the secrets of their body and would soon be able to offer them opportunities to take control of their health and ageing rather than leaving it to chance. Even better if an enormous sample was pooled for study. This is the only realistic way to move toward a complete understanding of how our bodies work. There are real potential abuses of privacy, but we shouldn't let those scare us into failing to progress. The fact is, you leave your genetic information everywhere you go. If any restaurant wanted to get into the DNA collection business, they would never run out of material. In the near future, I wouldn't be surprised if some people argued that any genetic material left at their business was their rightful property, and since you made no effort to hide the fact that you were eating off that particular fork, they shouldn't have to avert their eyes from your DNA or deny its association with you. Perhaps on your next visit to any chain restaurant, they could suggest a menu more appropriate to your specific health needs.

anonymoushn 13y ago

Is it reasonable to say that a government is more accountable to taxpayers than a company is to customers? If I am displeased with the policies of KillBrownPeopleOnTheOtherSideOfTheWorldCorp or TheKidnapPeopleWhoGrowFungusesCompany, I can just decide not to purchase their services. The process available in government is that I can vote to replace the person who oversees the policies, which will remain unchanged.

patrickg_zill 13y ago

When a baby is born in CA, do the parents have a choice, as to whether or not the blood sample is collected?

gojomo 13y ago
My understanding, from the 2nd link I included and other sources, is that parents can opt-out if they are insistent beforehand, and claim a religious exemption in writing. But they aren't specifically informed and asked before the blood sample is taken.