23andMe venturing onto Apple's turf with health data collection

Posted:
in General Discussion
DNA testing service 23andMe is piloting a program in which clients volunteer additional data such as lab results, collated in a style similar to Apple's Health Records.

23andMe kit


Other submitted data can include prescriptions and medical history, CNBC said. Data is being passed between third parties and 23andMe by way of an outside medical data network called Human API.

The benefit, the company says, is a central place to access medical records, which are typically scattered across different providers. Apple has said the same of its Health Records. As structured, 23andMe's system has advantages over Apple's system including not just genetic data, but insights into risks for chronic disease.

Much of 23andMe's income comes selling aggregated data to biotechnology and pharmaceutical firms, however, which has raised privacy concerns. And while the firm says it has denied data requests from law enforcement six times, it has also reserved the right to turn over data "if required to do so by law or in the good faith belief that such preservation or disclosure is reasonably necessary."

Apple's Health Records provides similar centralization services, but only for easier viewing and sharing by individuals. CEO Tim Cook recently touted privacy policies as a key advantage of Apple in the health space.

Comments

  • Reply 1 of 14
    Welp, those of us with zero interest in giving up control of our genetic information are not at a loss here.  🤪
    rain22racerhomie3doozydozenGeorgeBMac
  • Reply 2 of 14
    Given the 23andMe app still can’t figure out how to just import sleep and caffeine data from health in iOS for research, i think everyone is overestimating their ability

    Apple has a sophisticated real time health data collection & third party analytics platform, which including importing genotyping data from 23andMe in ResearchKit. Unless the researchers figure out a huge usage of genotyping tomorrow and everyone is using 23andMe for the data source, Apple doing fine. (And that’s assuming we don’t need DNA Methylation sequencing and DNA sequencing, which map the actual gene and whether it is actually activated, not available from 23andMe, for such life changing application)

    Of course, if you expect Apple gonna create all the health technology around the world, then yes, this is bad. 
  • Reply 3 of 14
    rain22rain22 Posts: 132member
    Welp, those of us with zero interest in giving up control of our genetic information are not at a loss here.  🤪
    It was revealed that these companies share the results with government and big data - who are the idiots handing over their DNA???
    chasmmld53aGeorgeBMac
  • Reply 4 of 14
    macseekermacseeker Posts: 545member
    rain22 said:
    Welp, those of us with zero interest in giving up control of our genetic information are not at a loss here.  🤪
    It was revealed that these companies share the results with government and big data - who are the idiots handing over their DNA???
    Especially everybody's favorite FBI.
    chasmmld53a
  • Reply 5 of 14
    irelandireland Posts: 17,798member
    DNA ancestry tests are totally overrated and IMO not worth the money. There are so many variables it turns out they seem to not really guarantee much. And things like, “just because your results show 0% doesn’t mean you don’t have Native ancestry, etc. You just end up with a big bunch of questions and frankly I found the whole thing lacking and grossly unsatisfactory. Value and unfulfilling. 
  • Reply 6 of 14
    EsquireCatsEsquireCats Posts: 1,268member
    Just a reminder that 23andme have historically provided minimal resistance to government requests for DNA data. Which is in stark contrast to Apple which has famously resisted broad, vague or improper requests or requests that could reveal information about others. 

    DNA is particularly interesting tool for government enforcement, because one could use any family member to get an accurate portrayal of a target DNA for investigative purposes, identification of lifestyle risk factors and such. For this reason one would expect that DNA would receive more protection because a subpoena can reveal personal information about not just the person named on the subpoena, but their family members.

    Indeed this is actually part of the 23andme service, whereby it aims to give you insight into disease and find your distant relatives via DNA comparison. So there is already ground work for the idea that this information could be exploited.
    edited July 2019 chasm
  • Reply 7 of 14
    chasmchasm Posts: 3,303member
    So they want to aggregate your health data and then sell it to whoever for profit, as opposed to Apple’s strict privacy and security. Well, that’s a no-brained ...
    mld53a
  • Reply 8 of 14
    anonymouseanonymouse Posts: 6,860member
    What could possibly go wrong?
    GeorgeBMacLordeHawk
  • Reply 9 of 14
    GeorgeBMacGeorgeBMac Posts: 11,421member
    chasm said:
    So they want to aggregate your health data and then sell it to whoever for profit, as opposed to Apple’s strict privacy and security. Well, that’s a no-brained ...
    Yeh, it makes ZERO sense to compare/conflate Apple's collection of health data with that of 23 and Me (or all the other services looking to distribute your private health information to others)

    Apple collects it at your request and distributes to YOU (only).
    The others such as 23 and me collect it, and while you have access to it (or some of it), they are free to use it and distribute it as they see fit.

    With the advent of EHR (Electronic Health Records) what used to be personal health care information that was between you and your doctor has entered the realm of Big Data and is equivalent to Google & FaceBook collecting, analyzing and profiting from your personal browsing and social media history.  Today, while you and your designated friends and relatives may be blocked from seeing some or all of your health records, they are freely available to any all health care providers who care to look at them.   The industry justifies that by telling unsuspecting patients that it is for their own good -- that BenevolentBigBrother is only concerned about their health and well being.
  • Reply 10 of 14
    kenaustuskenaustus Posts: 924member
    The biggest risk is with health insurance companies who would love the data so they can drop policy holders who might have a previously unknown issue.  Toss in medications and you never want to need to change insurance companies because a change in jobs.
  • Reply 11 of 14
    JFC_PAJFC_PA Posts: 932member
    They share their data with cops: so trusting them with the rest of my medical data? Hard pass. 

    Otoh an electronic medical data standard under my physical control and not every medical service provider I’ve ever used would be a huge upgrade in medical service efficiency. No endlessly repeating the same procedures just because another provider didn’t share. 
    edited July 2019
  • Reply 12 of 14
    GeorgeBMacGeorgeBMac Posts: 11,421member
    kenaustus said:
    The biggest risk is with health insurance companies who would love the data so they can drop policy holders who might have a previously unknown issue.  Toss in medications and you never want to need to change insurance companies because a change in jobs.
    That's one of the problems that the ACA resolved.   But, that's all being undone.   So being dropped by your insurance carrier (or simply denied or priced out of the market) could come roaring back.

    But, insurers and health providers already have full access to your health information.   They know more about you than you know about you.  But, currently they are not allowed by law to act on that information.   But, I really have to wonder about self insured employers.   The ACA protects you from being dropped by your insurer -- but not your employer.

  • Reply 13 of 14
    macguimacgui Posts: 2,360member
    There's no way I'll give my health data to somebody who'll provide it to anybody who sends in two box tops.


  • Reply 14 of 14
    GeorgeBMacGeorgeBMac Posts: 11,421member
    macgui said:
    There's no way I'll give my health data to somebody who'll provide it to anybody who sends in two box tops.


    With EHRs its already available -- just not to you, your family or caregivers.  That provides a false sense of security.
    gatorguy
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