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If my fear was that an organization holding genetic data was going to break policies and law against my interests, I'd be at least as concerned about the State

by gojomo 13y ago

If my fear was that an organization holding genetic data was going to break policies and law against my interests, I'd be at least as concerned about the State of California (and other states). Every state (by federal law since 1963) screens almost every newborn baby, via a blood test, for genetic diseases: http://articles.latimes.com/2013/jul/19/opinion/la-oe-timmermans-infant-genetic-screening-20130719 http://articles.latimes.com/2013/jul/19/opinion/la-oe-timmer... California retains the residual blood spots for followup studies, apparently indefinitely – see the section "Storage and Use of Dried Blood Spots": http://www.babysfirsttest.org/newborn-screening/states/california#second-section http://www.babysfirsttest.org/newborn-screening/states/calif... California currently screens for 79 disorders: http://www.cdph.ca.gov/programs/nbs/Documents/NBS-DisordersDetectable011312.pdf http://www.cdph.ca.gov/programs/nbs/Documents/NBS-DisordersD... And, results lookup long afterward by disorder is possible, since there's a routine, by-email procedure for checking the sickle-cell status of NCAA athletes: http://www.cdph.ca.gov/programs/nbs/Pages/NBSFAQTraitAthletes.aspx http://www.cdph.ca.gov/programs/nbs/Pages/NBSFAQTraitAthlete... The policies for the data and the retained sample are described by the 'babysfirsttest' site above as allowing use "for medical intervention, counseling or specific research projects which the California Board of Health approves" and "anonymous research studies". Those sound about equivalent to the 23andMe policy... and at a similar risk of reinterpretation or rule-bending if organizational priorities or technology change.

Sheepshow 13y ago
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.

by gojomo 13y ago

Sheepshow 13y ago

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.