[Ccpa] It seems that this digital dividend thing is happening in other states

Sun Mar 3 07:37:23 PST 2019

Thanks, Ernesto. I recently attended a precision medicine conference and
there was a lot of talk about digital dividends for health data. Businesses
that capitalize off data are very eager to pay consumers a token amount for
valuable, personal, information.

Dena B. Mendelsohn

Senior Policy Counsel o (415) 431-6747

CR.org
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On Sat, Mar 2, 2019 at 4:02 PM Ernesto Falcon <ernesto at eff.org> wrote:

> I asked a colleague in Oregon who is on the front line on this terrible
> bill that is essentially a digital dividend argument if I could share their
> summary with this group and they ok'd it, so take a look below. EFF is
> working to help them spike it down and keep it dead, but I think we're
> looking at some sort of national campaign by a well financed group and we
> should inform our colleagues in other states where possible to keep an eye
> out. A lot of details below on their strategy.
>
>
> I promised you an update on SB 703, which we have been fighting here in
> Oregon. I’m not sure how familiar you are with Hu-manity.co, or with
> other folks that are promoting a “new human right” where your data is your
> “property.” I wasn’t super aware of it before this bill came to Oregon, and
> for the last month or so I’ve been diving down deeper and deeper rabbit
> holes investigating them.
>
>  It’s honestly really disturbing, dystopian stuff. It’s being promoted as
> altruistic, but the people behind it are already mega-rich from selling our
> data, and they are now finding a new way to disrupt the market so they can
> make even more. The really short explanation is that these folks want to
> convince us that our privacy is already lost, so we may as well get paid
> and give them a cut. And somehow the payment will make it totally fine that
> they are encouraging us to give up even more data. We should feel OK
> though, because they will make sure our data is secure through the use of
> blockchain technology. Just trust them…
>
>  My current concern is that they are incredibly aggressive. I understand
> they have even reached out to members of our congressional delegation about
> doing something similar at the national level. Despite our crushing them at
> the Senate Judiciary hearing last week, they are still working the bill
> incredibly hard here in Oregon, reaching out to organizations like Planned
> Parenthood, SEIU, and everyone under the sun, trying to get people to sign
> on in support of the bill.
>
>  They are also incredibly smooth talkers, and good at confusing people. It
> is amazing how many people they fooled into thinking that they have
> altruistic motives. It’s honestly hard to think of a more circular
> conversation, filled with gobbledygook and side-steps, than the
> conversations I’ve had with a co-founder of this company. He’s kind of
> amazing, and not in a great way. He also told us (myself and Chad Marlow at
> our national) multiple outright lies. Yes, I’m pretty worked up about it
> all.
>
>  Here’s a bit more of a run-down of the bill, which you can find (along
> with testimony and such) at this link
> <https://olis.leg.state.or.us/liz/2019R1/Measures/Overview/SB703>:
>
>    - HIPPA currently allows the sale of de-identified data for research
>    purposes. It prohibits sale of personally identifiable data without
>    authorization.
>       - Under the current scheme, large-scale data brokers sell
>       de-identified data for research in a multi-billion dollar market.
>       - Note that the founder of Hu-manity.co got rich working for one of
>       those brokers (Iqvia).
>       - Note that one of the main purchasers of data from those brokers
>       is Pfizer, who has an advisor to Hu-manity.co’s board of directors
>       listed on their website.
>    - This bill would prohibit the sale of de-identified data for research
>    without authorization.
>       - This part of the bill is well-intentioned, but also could
>       seriously hinder research, and so a longer conversation about it is needed.
>    - The bill would also explicitly allow individuals to receive
>    compensation when authorization is given for sale of both de-identified and
>    identifiable health info.
>       - This would create a legal framework for Hu-manity.co to insert
>       itself (as yet another data broker) into the current market where
>       de-identified data is sold.
>       - Once that happens, Hu-manity.co would be in an ideal position to
>       act as a broker for the sale of identifiable data, because they will have
>       set themselves up as the broker in the de-identified data marketplace and
>       will have direct contact with all of the consumers they’ve corralled
>       through that process.
>       - The business model is dependent on people actually giving up more
>       information than they currently do.
>       - Hu-manity.co thinks this is fine, because people will get paid
>       and Hu-manity.co will get a cut.
>       - *We are convinced that their interest is not actually in
>       preserving privacy. It is instead (a) getting a cut of the market of the
>       sale of data, and (b) incentivizing people to sell even more data so they
>       can get that cut.*
>    - *They aren’t going to stop here. Their next plan is financial data,
>    geolocation data, and more.*
>       - As mentioned in one of the articles below, their founder has
>       admitted to envisioning a world where people give up even more of their
>       privacy for cash.
>       - This is already popping up in another context in California,
>       being promoted as a “digital dividend.”
>
>
>
> Here are some relevant articles:
>
>    - Article on NPR:
>    https://www.npr.org/sections/health-shots/2018/10/15/657493767/if-your-medical-information-becomes-a-moneymaker-could-you-could-get-a-cut
>       - Quote: “Pharmaceutical companies could potentially pay each user
>       $10 a month for access to their data, Etwaru says.* The drug
>       companies would also pay Hu-manity.co <http://Hu-manity.co> for access to
>       these preferences.* Hu-manity.co is framing its for-profit business
>       as a fight for a new human right.”
>
>
>
>    - TechCrunch article:
>    https://techcrunch.com/2018/07/18/hu-manity-wants-to-create-a-health-data-marketplace-with-help-from-blockchain/
>       - This one gets really explicit about the fact that they want to
>       make money by encouraging people to sell identifiable data. So rather than
>       just de-identified data being sold, they want people to attach their names
>       to the data, so they can get a cut, and as a result *MORE data (in
>       quantity and type) will get sold*. This is actually about
>       encouraging people to give up more information than is actually being sold
>       on the market right now.
>
>
>
>    - Medium article:
>    https://medium.com/neodotlife/hu-manity-richie-etwaru-data-as-property-7986077d4d4b
>       - “[The founder of Hu-manity.co] seems to be sincere. Like a
>       growing number of people in tech, he predicts that in the near future,
>       machines and artificial intelligence will do most of our work for us, and
>       many jobs will disappear. All those jobless people will still need money.
>       Selling personal data could be an important source of income, he suggests.”
>       - “…Etwaru thinks this is a step toward a more enlightened future.
>       Health records are merely the test case for Hu-manity.co: *Afterward
>       comes financial data, then the geolocation data that your cell phone and
>       car collect on you.* Eventually, the whole data universe. If
>       anything about your activity has value, he says, it should be your
>       birthright, yours to sell.”
>
> --
> Ernesto Omar Falcon
> Legislative Counsel
> Electronic Frontier Foundation
> Office: 415 436 9333 ext. 182
> Cell: 202 716 0770
>
> _______________________________________________
> Ccpa mailing list
> Ccpa at lists.eff.org
> https://lists.eff.org/mailman/listinfo/ccpa
>

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