MESSAGE
| DATE | 2023-04-16 |
| FROM | Ruben Safir
|
| SUBJECT | Re: [Hangout - NYLXS] Ancestry: Why ANONYMOUS testing NOT ALLOWED
|
On Sun, Apr 16, 2023 at 09:31:53PM -0400, Paul Robert Marino wrote:
> Ruben,
> The users do "sign" a HIPAA waiver it's called the terms of service.
They are REQUIRED to sign a HIPPA NOTICE.
> 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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> Hangout-at-nylxs.com
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