<div dir="ltr">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.<div><br clear="all"><div><div dir="ltr" class="gmail_signature" data-smartmail="gmail_signature"><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div><span style="font-size:14.6667px;font-family:Arial;font-weight:700;vertical-align:baseline;white-space:pre-wrap"><p dir="ltr" style="font-weight:400;white-space:normal;color:rgb(51,51,51);font-family:arial,sans-serif;font-size:medium;line-height:1.8;margin-top:3pt;margin-bottom:5pt"><span style="font-size:12pt;font-family:Arial;color:rgb(34,34,34);background-color:transparent;font-weight:700;vertical-align:baseline;white-space:pre-wrap">Dena B. Mendelsohn</span></p><p dir="ltr" style="font-weight:400;white-space:normal;color:rgb(51,51,51);font-family:arial,sans-serif;font-size:medium;line-height:1.2;margin-top:3pt;margin-bottom:3pt"><span style="font-size:10pt;font-family:Arial;color:rgb(34,34,34);background-color:transparent;vertical-align:baseline;white-space:pre-wrap">Senior Policy Counsel
</span><span style="background-color:transparent;color:rgb(34,34,34);font-family:Arial;font-size:10pt;white-space:pre-wrap">o (415) 431-6747 </span></p><p dir="ltr" style="font-size:small;font-weight:400;white-space:normal;color:rgb(51,51,51);font-family:arial,sans-serif;line-height:1.656;margin-top:3pt;margin-bottom:5pt"><span style="color:rgb(0,174,77);font-family:Arial;background-color:transparent;font-weight:700;vertical-align:baseline;white-space:pre-wrap"><a href="http://www.google.com/url?q=http%3A%2F%2Fcr.org%2F&sa=D&sntz=1&usg=AFQjCNEPer8_n1B22tRY54Ey8b8YbjotDQ" style="color:rgb(0,174,77);font-size:11pt" target="_blank">CR.org</a><span style="font-size:11pt"> </span></span><a href="https://advocacy.consumerreports.org/" style="color:rgb(0,174,77);font-size:14.6667px;font-family:Arial;font-weight:700;white-space:pre-wrap" target="_blank">CR.org/advocacy</a></p><p dir="ltr" style="font-weight:400;white-space:normal;color:rgb(51,51,51);font-family:arial,sans-serif;font-size:medium;line-height:1.656;margin-top:3pt;margin-bottom:5pt"><a href="http://www.google.com/url?q=http%3A%2F%2Fcr.org&sa=D&sntz=1&usg=AFQjCNHOTMLPmT81MSO0uoTpxKTUJ1NI-Q" style="color:rgb(0,174,77);background-color:transparent;font-family:Arial;font-size:10pt;white-space:pre-wrap" target="_blank"><img height="53" src="https://lh5.googleusercontent.com/poMUb4CXo-U9aghOMHQ1T6WepyL8feq5SerZxRbj11hGPiPIrw1HiE6UDdbK7HX0QndnaCD4xDOIgIsQHgaA6E-8utCLIy5ec25UyTb6gBK-nJ2nf4IqVvc2hgIfBRvN8xW2w9bX" width="208" style="border:none;padding:0px"></a></p></span></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div><br></div></div><br><div class="gmail_quote"><div dir="ltr" class="gmail_attr">On Sat, Mar 2, 2019 at 4:02 PM Ernesto Falcon <<a href="mailto:ernesto@eff.org">ernesto@eff.org</a>> wrote:<br></div><blockquote class="gmail_quote" style="margin:0px 0px 0px 0.8ex;border-left:1px solid rgb(204,204,204);padding-left:1ex">
<div bgcolor="#FFFFFF">
<p><span style="font-size:11pt;font-family:calibri,sans-serif;color:rgb(31,73,125)">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.<br>
</span></p>
<p><span style="font-size:11pt;font-family:calibri,sans-serif;color:rgb(31,73,125)"><br>
</span></p>
<p><span style="font-size:11pt;font-family:calibri,sans-serif;color:rgb(31,73,125)">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
<a href="http://Hu-manity.co" target="_blank">Hu-manity.co</a>, 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.</span></p>
<p><span style="font-size:11pt;font-family:calibri,sans-serif;color:rgb(31,73,125)"> 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…</span></p>
<p><span style="font-size:11pt;font-family:calibri,sans-serif;color:rgb(31,73,125)"> 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.
</span></p>
<p><span style="font-size:11pt;font-family:calibri,sans-serif;color:rgb(31,73,125)"> 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. </span></p>
<p><span style="font-size:11pt;font-family:calibri,sans-serif;color:rgb(31,73,125)"> Here’s a bit more of a run-down of
the bill, which you can find (along with testimony and such) at
<a href="https://olis.leg.state.or.us/liz/2019R1/Measures/Overview/SB703" target="_blank">this
link</a>:</span></p>
<ul style="margin-top:0in" type="disc">
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">HIPPA
currently allows the sale of de-identified data for research
purposes. It prohibits sale of personally identifiable data
without authorization.
</span>
<ul style="margin-top:0in" type="circle">
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">Under
the current scheme, large-scale data brokers sell
de-identified data for research in a multi-billion dollar
market.
</span></li>
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">Note
that the founder of
<a href="http://Hu-manity.co" target="_blank">Hu-manity.co</a> got rich
working for one of those brokers (Iqvia).</span></li>
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">Note
that one of the main purchasers of data from those brokers
is Pfizer, who has an advisor to
<a href="http://Hu-manity.co" target="_blank">Hu-manity.co</a>’s board of
directors listed on their website.</span></li>
</ul>
</li>
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">This
bill would prohibit the sale of de-identified data for
research without authorization.
</span>
<ul style="margin-top:0in" type="circle">
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">This
part of the bill is well-intentioned, but also could
seriously hinder research, and so a longer conversation
about it is needed.</span></li>
</ul>
</li>
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">The
bill would also explicitly allow individuals to receive
compensation when authorization is given for sale of both
de-identified and identifiable health info.
</span>
<ul style="margin-top:0in" type="circle">
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">This
would create a legal framework for
<a href="http://Hu-manity.co" target="_blank">Hu-manity.co</a> to insert
itself (as yet another data broker) into the current
market where de-identified data is sold.</span></li>
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">Once
that happens,
<a href="http://Hu-manity.co" target="_blank">Hu-manity.co</a> 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.</span></li>
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">The
business model is dependent on people actually giving up
more information than they currently do.
</span></li>
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif"><a href="http://Hu-manity.co" target="_blank">Hu-manity.co</a> thinks this
is fine, because people will get paid and
<a href="http://Hu-manity.co" target="_blank">Hu-manity.co</a> will get a
cut. </span></li>
<li style="color:rgb(31,73,125)"><b><span style="font-size:11pt;font-family:calibri,sans-serif">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.</span></b><span style="font-size:11pt;font-family:calibri,sans-serif"></span></li>
</ul>
</li>
<li style="color:rgb(31,73,125)"><b><span style="font-size:11pt;font-family:calibri,sans-serif">They
aren’t going to stop here. Their next plan is financial
data, geolocation data, and more.</span></b><span style="font-size:11pt;font-family:calibri,sans-serif">
</span>
<ul style="margin-top:0in" type="circle">
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">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.</span></li>
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">This
is already popping up in another context in California,
being promoted as a “digital dividend.”</span></li>
</ul>
</li>
</ul>
<p><span style="font-size:11pt;font-family:calibri,sans-serif;color:rgb(31,73,125)"> </span></p>
<p><span style="font-size:11pt;font-family:calibri,sans-serif;color:rgb(31,73,125)">Here are some relevant articles:</span></p>
<ul style="margin-top:0in" type="disc">
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">Article
on NPR: <a href="https://www.npr.org/sections/health-shots/2018/10/15/657493767/if-your-medical-information-becomes-a-moneymaker-could-you-could-get-a-cut" target="_blank">https://www.npr.org/sections/health-shots/2018/10/15/657493767/if-your-medical-information-becomes-a-moneymaker-could-you-could-get-a-cut</a>
</span>
<ul style="margin-top:0in" type="circle">
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">Quote:
“Pharmaceutical companies could potentially pay each user
$10 a month for access to their data, Etwaru says.<b> The
drug companies would also pay
<a href="http://Hu-manity.co" target="_blank">Hu-manity.co</a> for
access to these preferences.</b> <a href="http://Hu-manity.co" target="_blank">Hu-manity.co</a> is framing
its for-profit business as a fight for a new human right.”</span></li>
</ul>
</li>
</ul>
<p><span style="font-size:11pt;font-family:calibri,sans-serif;color:rgb(31,73,125)"> </span></p>
<ul style="margin-top:0in" type="disc">
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">TechCrunch
article: <a href="https://techcrunch.com/2018/07/18/hu-manity-wants-to-create-a-health-data-marketplace-with-help-from-blockchain/" target="_blank">https://techcrunch.com/2018/07/18/hu-manity-wants-to-create-a-health-data-marketplace-with-help-from-blockchain/</a>
</span>
<ul style="margin-top:0in" type="circle">
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">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
<b>MORE data (in quantity and type) will get sold</b>.
This is actually about encouraging people to give up more
information than is actually being sold on the market
right now.</span></li>
</ul>
</li>
</ul>
<p><span style="font-size:11pt;font-family:calibri,sans-serif;color:rgb(31,73,125)"> </span></p>
<ul style="margin-top:0in" type="disc">
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">Medium
article:
<a href="https://medium.com/neodotlife/hu-manity-richie-etwaru-data-as-property-7986077d4d4b" target="_blank">https://medium.com/neodotlife/hu-manity-richie-etwaru-data-as-property-7986077d4d4b</a>
</span>
<ul style="margin-top:0in" type="circle">
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">“[The
founder of
<a href="http://Hu-manity.co" target="_blank">Hu-manity.co</a>] 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.”</span></li>
<li style="color:rgb(31,73,125)"><span style="font-size:11pt;font-family:calibri,sans-serif">“…Etwaru
thinks this is a step toward a more enlightened future.
Health records are merely the test case for
<a href="http://Hu-manity.co" target="_blank">Hu-manity.co</a>: <b>Afterward
comes financial data, then the geolocation data that
your cell phone and car collect on you.</b> Eventually,
the whole data universe. If anything about your activity
has value, he says, it should be your birthright, yours to
sell.”</span></li>
</ul>
</li>
</ul>
<pre class="gmail-m_-7424018341675903096moz-signature" cols="72">--
Ernesto Omar Falcon
Legislative Counsel
Electronic Frontier Foundation
Office: 415 436 9333 ext. 182
Cell: 202 716 0770</pre>
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