[MyData & Open Data] we have a price: 11KEUR/personal medical data

Thu May 1 12:22:59 UTC 2014

Morozov's opinions on this are very interesting, indeed.
For French speakers, here's a pro-"ownership" position
http://ecrans.liberation.fr/ecrans/2013/10/23/nous-sommes-tous-des-ayants-droit_941525(+
see all types of declarations related to personal data by Gilles
Babinet, the "Digital champion for France")
And a very comprehensive piece that discusses all these positions in an
intelligible, very insightful and structured way:
http://vecam.org/article1289.html

A reminder, FWIW: the EU data protection reform is to be completed by the
end of the year. And there are still many things to address, as highlighted
by EDRi (
https://edri.org/european-parliament-votes-data-protection-reform-report-mass-surveillance/)
:
"

[...] Despite some improvements to the Commission’s initial proposal, the
adopted text contains measures that undermine the strength of the overall
Regulation. For example, the Regulation allows companies to process
personal data and create user profiles (e.g. for marketing reasons) without
individual consent, provided that the data remains pseudonymous. Although
the European Parliament understands pseudonymous to mean ‘not directly
related to you,’ the reality of the era of big data means that as few as
two datasets, when analysed together, can easily determine an individual’s
identity.

Under the Parliament’s version of the Regulation, companies can also
process and utilise user data without consent if its within their
“legitimate interest,” a vaguely defined term that gives permission to data
controllers to share your information with “third parties.” Through this
weak safeguard, the company must determine if its actions are in line with
the user’s “reasonable expectations,” a phrase close to meaningless in our
ever-changing digital environment. The opportunity to clarify and restrict
the concept of “legitimate interest” that is already in the 1995 Directive
has now been lost.

"

Rayna

2014-05-01 13:52 GMT+02:00 Pierre Chrzanowski <pierre.chrzanowski at gmail.com>
:

> Hi,
>
> There is also datacoup.com in the US which has been covered in the MIT
> Tech Review  [1].
>
> Also in the MIT Tech Review, I already mentioned here but this article
> from Evgeny Morozov [2] is really good. Morozov argues that "my decision to
> disclose personal information (...) will inevitably have implications for
> other people". He tells us that personal data is not only an issue of
> ownership, freedom and privacy but also of democracy, justice and
> inequality.
>
> @Rayna : do you have evidences / links regarding a campaign on selling
> your own personal data in France ?
>
> Also I would be interested in looking to arguments  and position of midata
> and mesinfos projects in UK and France regarding selling your own personal
> data.
>
> [1]
> http://www.technologyreview.com/news/524621/sell-your-personal-data-for-8-a-month/
> [2]
> http://www.technologyreview.com/featuredstory/520426/the-real-privacy-problem/
>
>
>
> On Thu, May 1, 2014 at 1:19 PM, Rayna <rayna.st at gmail.com> wrote:
>
>> Sally - thanks for the reminder.
>>
>> There are more and more companies (such as this one in France
>> yesprofile.com <http://t.co/eZ0jRVBmWg> ) which monetize your personal
>> data for you. You can e.g. "rent your profile to brands"...
>>
>> Henning - I'm not sure what additional explanation you need :) Think of
>> this practice and what impact it will have on privacy, access to
>> healthcare, etc. and the social network itself. In addition, there have
>> been quite a few exchanges on this very list related to "ownership" of
>> (personal) data.
>>
>>
>>
>> 2014-05-01 13:03 GMT+02:00 Sally Deffor <sally.deffor at okfn.org>:
>>
>> Hi Rayna,
>>> I don't have any examples of specific cases of campaigning for the
>>> monetisation of personal data like you mentioned, but a couple of weeks ago
>>> I shared this post
>>> <http://www.horizon.ac.uk/News/dutch-student-sells-his-data-for-350-but-at-what-price-privacy?utm_source=twitterfeed&utm_medium=twitter>about
>>> someone putting all his data up for auction. I also thought it was a
>>> worrying trend as your personal data could inevitably be linked to that of
>>> others. I anticipate some legal wrangles to emerge if such a legislation
>>> were to come into force, without appropriate protection for linked parties.
>>>
>>> Sally
>>>
>>>
>>> On 1 May 2014 11:50, Henning Kopp <henning.kopp at uni-ulm.de> wrote:
>>>
>>>>  Dear Rayna,
>>>> can you please elaborate why you think that this idea is insane?
>>>>
>>>> Best regards
>>>> Henning Kopp
>>>>
>>>>
>>>> Am 01.05.2014 12:18, schrieb Rayna:
>>>>
>>>> Thanks for highlighting this, Stef.
>>>>
>>>> There's a very worrisome trend advocated/lobbyied for by some prominent
>>>> people here in France about implementing some sort of "copyright-like"
>>>> legislation for personal data. In other words, the baseline is to have a
>>>> copyright framework that views personal data as your property --
>>>> possessions that you could, naturally (sic), sell and make money out of.
>>>>
>>>> The idea sounds insane to me (insane as in lack of basic intellectual
>>>> sanity) but I am under the impression such a vision starts spreading. I'd
>>>> be curious to know whether you've seen similar discussions/trends in your
>>>> respective countries and/or on a more transnational level. After all, the
>>>> EU Data Protection directive is the most deeply plagued one by all sorts of
>>>> lobbyies in the history of the EU...
>>>>
>>>> Thanks,
>>>> Rayna
>>>>
>>>>
>>>>
>>>> 2014-05-01 11:52 GMT+02:00 stef <s at ctrlc.hu> <s at ctrlc.hu>:
>>>>
>>>>
>>>>  In this petition to Strasbourg, Ms H. complained that the MADEKKI, by
>>>> collecting her personal medical data, had violated her rights under
>>>>
>>>>  Article 8
>>>>
>>>>  (right to respect for private and family life). The Court found that her
>>>> rights had indeed been violated and awarded her 11,000 euros by way of
>>>>
>>>>  “just
>>>>
>>>>  satisfaction”, or non-pecuniary damages.
>>>>
>>>>  http://ukhumanrightsblog.com/2014/04/30/disclosure-of-medical-records-breached-patients-human-rights-strasbourg/
>>>>
>>>> --
>>>> otr fp: https://www.ctrlc.hu/~stef/otr.txt
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>>>>
>>>>
>>>>
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>>>>
>>>
>>>
>>> --
>>>
>>>
>>> *Sally DefforOpen Data & Privacy Project Coordinator |
>>> skype:deffor.selase | @SDeffor | +44 (0)7774 734206
>>> <%2B44%20%280%297774%20734206> The **Open Knowledge Foundation*<http://okfn.org/>
>>>
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>>
>>
>>
>> --
>> "Change l'ordre du monde plutôt que tes désirs."
>>
>> http://me.hatewasabi.info/
>>
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>>
>
>
> --
> *Pierre Chrzanowski*
> *Expert Open Data*
>
> Mail : pierre.chrzanowski at gmail.com
> Skype : pierre.chrzanowski | Twitter : @pzwsk
>

-- 
"Change l'ordre du monde plutôt que tes désirs."

http://me.hatewasabi.info/
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