MESSAGE
| DATE | 2023-04-16 |
| FROM | Paul Robert Marino
|
| SUBJECT | Re: [Hangout - NYLXS] Ancestry: Why ANONYMOUS testing NOT ALLOWED
|
Ruben,
The users do "sign" a HIPAA waiver it's called the terms of service.
They agree to the terms of service which includes such a waiver for
HIPAA and a number of other legal protections, and even agree to
resolve any legal disputes through binding arbitration where the
company gets to shop for the arbitrator most agreeable to them and set
the rules of the arbitration.
Not only that but in their terms of service for all of them clearly
state that it is not collected for medical purposes and should not be
considered as medical advice and only anecdotal, and as such they
don't consider it to be a medical record.
While we all know it is a medical record the terms of service say it's
not and the user who submitted their sample has agreed with their
definition, so in the eyes of the US courts the agreed upon definition
in the contract trumps all other logical arguments or definitions in
any laws or regulations.
I'm not saying it's right but it is the legal stance they have taken.
and the users of these services agree to it whether they know it or
not and the US courts will not help them.
On Sun, Apr 16, 2023 at 3:02 PM Ruben Safir wrote:
>
> Research. "Research" is any systematic investigation designed to develop
> or contribute to generalizable knowledge.37 The Privacy Rule permits a
> covered entity to use and disclose protected health information for
> research purposes, without an individual's authorization, provided the
> covered entity obtains either: (1) documentation that an alteration or
> waiver of individuals' authorization for the use or disclosure of
> protected health information about them for research purposes has been
> approved by an Institutional Review Board or Privacy Board; (2)
> representations from the researcher that the use or disclosure of the
> protected health information is solely to prepare a research protocol or
> for similar purpose preparatory to research, that the researcher will
> not remove any protected health information from the covered entity, and
> that protected health information for which access is sought is
> necessary for the research; or (3) representations from the researcher
> that the use or disclosure sought is solely for research on the
> protected health information of decedents, that the protected health
> information sought is necessary for the research, and, at the request of
> the covered entity, documentation of the death of the individuals about
> whom information is sought.38 A covered entity also may use or disclose,
> without an individuals' authorization, a limited data set of protected
> health information for research purposes (see discussion below).39 See
> additional guidance on Research and NIH's publication of "Protecting
> Personal Health Information in Research: Understanding the HIPAA Privacy
> Rule." - PDF
>
>
>
>
> On Sun, Apr 16, 2023 at 02:57:57PM -0400, Ruben Safir wrote:
> > On Sun, Apr 16, 2023 at 02:40:28PM -0400, Paul Robert Marino wrote:
> > > No it doesn't but most hospitals won't try to force you to sign a
> > > waiver relinquishing your rights under HIPAA in fact i don't think
> > > they legally can, but web companies do to earn just a few more cents
> > > off of you from selling your data, or pattenting thing they think they
> > > found out because of it and other private information you provided,
> > > Its a problem I agree but thats why people should be informed more
> > > about the possible repercussions of using these widely advertised
> > > cheep services, but on this mailing list we are preaching to the
> > > choir.
> > >
> >
> > HIPAA laws have to do with the data - the data is legally protected.
> >
> > In addition, it also identifies overed entitites... which is anyone
> > that comes in contact with personal health information.
> >
> > Don't argue with me on this. I do it for a living and you will lose.
> >
> >
> > The click through, my guess, is also not waivable which doesn't prevent
> > these very dangerous people from trying to abuse the system
> >
> > https://www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html
> >
> > If you collect labs from patients with their private data attached to
> > it, you are a covered entitiy as a health care provider.
> >
> > If you do business with such and entity, you are covered as a business
> > associate of the entity and you are also covered.
> >
> > You can and MUST sign a release to have your private data exposed and
> > that is the reason for the waivers, and such waviers need to be
> > specific... a lot more specific than what they are providing and means,
> > actually, that the entire SCAM is illegal under civil law, although you
> > might need to show proof of damage to collect money for PPI leaks.
> >
> >
> >
> >
> >
> >
> > > On Sat, Apr 15, 2023 at 8:03 PM Ruben Safir wrote:
> > > >
> > > > On Sat, Apr 15, 2023 at 05:44:15PM -0400, Paul Robert Marino wrote:
> > > > > If you want to have your DNA scanned strictly for medical reasons only
> > > > > (not ancestral data or to see who's related to you), you can do that
> > > > > at a hospital or other medical office that offers the service in your
> > > > > area and in that way privacy laws,and regulations about medical
> > > > > documents for the country and region will apply to them.
> > > >
> > > >
> > > > The fact that they aren't a hospital doesn't preclude them from securing
> > > > your data in the HIPA
> > > >
> > > > > It is much
> > > > > more expensive than those services but they actually do a full scan
> > > > > not just the partial scan done by those services and as a result
> > > > > reveal much more information, and your medical insurance may cover it
> > > > > under certain circumstances.
> > > > >
> > > > > On Sat, Apr 15, 2023 at 4:39???PM wrote:
> > > > > >
> > > > > > Thanks for your response, but I see I need to explain more clearly: I do not mean the "company" anonomyzing the DNA, I mean giving the co. a DNA sample with the subject person
> > > > > >
> > > > > > NOT GIVING THEIR IDENTITY TO THE COMPANY AT ALL.
> > > > > >
> > > > > > The biggest danger to letting these co.'s have your DNA is to yourself, your children, grandkids, and all descendents into the future.
> > > > > >
> > > > > > If they identify some genetic defect, you and all your descendents could be denied employment, health and life and insurance, and more than you can imagine.
> > > > > >
> > > > > > That is my point. Can you find such a DNA decoding lab or company that will allow anonymous sample submissions ?
> > > > > >
> > > > > > I understand the answer is NO. That fact alone should tell you something !
> > > > > >
> > > > > > If you are aware of any such company, please provide info / link.
> > > > > >
> > > > > > Thanks !
> > > > > >
> > > > > >
> > > > > > Gesendet: Samstag, 15. April 2023 um 15:38 Uhr
> > > > > > Von: "Paul Robert Marino"
> > > > > > An: ruth02-at-web.de
> > > > > > Cc: "Ruben Safir" , "Ancestry.com Customer Service" , "Harmon, Amy" , "rms" , "Hangout"
> > > > > > Betreff: Re: [Hangout - NYLXS] Ancestry: Why ANONYMOUS testing NOT ALLOWED ??
> > > > > > I don't know specifically about Ancestry and their terms of service,
> > > > > > but many of them do sell your genetic information for "research
> > > > > > purposes"! I can tell you this from first hand experience having
> > > > > > worked for an advertising company that bought that data for
> > > > > > "research" related to marketing. They stopped offering the marketing
> > > > > > product that used DNA because it wasn't profitable yet but I'm sure
> > > > > > they weren't the only ones who tried it and it will be something the
> > > > > > advertising industry will do in the future. As for if its anonymized
> > > > > > or not by the companies they may vary but it is used in ways you would
> > > > > > not expect reading the terms of service. here is just a few example
> > > > > > https://nypost.com/2023/02/02/i-took-a-23andme-dna-test-and-cops-linked-me-to-a-murder/
> > > > > > https://www.11alive.com/article/news/investigations/the-reveal/all-in-the-family-dna-investigation/85-179895c9-1b7e-4e93-8ab4-beae25a44a79
> > > > > >
> > > > > >
> > > > > > On Sat, Apr 15, 2023 at 11:12???AM wrote:
> > > > > > >
> > > > > > > Ruben,
> > > > > > >
> > > > > > > my friend in the USA, who also is a friend of your also but I don't see on your forum anymore, told me something about these USA ancestry tests which i don't think are avilable in my country.
> > > > > > >
> > > > > > > he said that no matter how hard you try, none of these companies will let a person give a sample and have it analyzed on an ANONYMOUS basis.
> > > > > > >
> > > > > > > In other words, they don't allow giving a sample, paying for the service, but without identifying yourself.
> > > > > > >
> > > > > > > Now, why is that ??
> > > > > > >
> > > > > > > Appreciate any insights you can give.
> > > > > > >
> > > > > > >
> > > > > > > Gesendet: Dienstag, 24. Januar 2023 um 21:48 Uhr
> > > > > > > Von: "Ruben Safir"
> > > > > > > An: "Ancestry.com Customer Service" , "Harmon, Amy" , "rms" , "Hangout"
> > > > > > > Betreff: Re: [Hangout - NYLXS] Ancestry
> > > > > > > On 1/24/23 17:55, Ancestry.com Customer Service wrote:
> > > > > > >
> > > > > > > _______________________________________________
> > > > > > > Hangout mailing list
> > > > > > > Hangout-at-nylxs.com
> > > > > > > http://lists.mrbrklyn.com/mailman/listinfo/hangout
> > > _______________________________________________
> > > Hangout mailing list
> > > Hangout-at-nylxs.com
> > > http://lists.mrbrklyn.com/mailman/listinfo/hangout
> >
> > --
> > So many immigrant groups have swept through our town
> > that Brooklyn, like Atlantis, reaches mythological
> > proportions in the mind of the world - RI Safir 1998
> > http://www.mrbrklyn.com
> >
> > DRM is THEFT - We are the STAKEHOLDERS - RI Safir 2002
> > http://www.nylxs.com - Leadership Development in Free Software
> > http://www2.mrbrklyn.com/resources - Unpublished Archive
> > http://www.coinhangout.com - coins!
> > http://www.brooklyn-living.com
> >
> > Being so tracked is for FARM ANIMALS and extermination camps,
> > but incompatible with living as a free human being. -RI Safir 2013
> >
> > _______________________________________________
> > Hangout mailing list
> > Hangout-at-nylxs.com
> > http://lists.mrbrklyn.com/mailman/listinfo/hangout
>
> --
> So many immigrant groups have swept through our town
> that Brooklyn, like Atlantis, reaches mythological
> proportions in the mind of the world - RI Safir 1998
> http://www.mrbrklyn.com
>
> DRM is THEFT - We are the STAKEHOLDERS - RI Safir 2002
> http://www.nylxs.com - Leadership Development in Free Software
> http://www2.mrbrklyn.com/resources - Unpublished Archive
> http://www.coinhangout.com - coins!
> http://www.brooklyn-living.com
>
> Being so tracked is for FARM ANIMALS and extermination camps,
> but incompatible with living as a free human being. -RI Safir 2013
>
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