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

Fri May 2 16:07:44 UTC 2014

P.S. For those willing to "play", here's FT's questionnaire to evaluate how
much your data is worth
http://www.ft.com/cms/s/2/927ca86e-d29b-11e2-88ed-00144feab7de.html#axzz30ZhVtbgD

2014-05-01 21:47 GMT+02:00 Mark L <mark.lizar at gmail.com>:

> Thank you Pierre for these links.
>
> - Mark
>
> On 1 May 2014, at 12:52, Pierre Chrzanowski <pierre.chrzanowski at gmail.com>
> wrote:
>
> 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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>>>>
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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
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"Change l'ordre du monde plutôt que tes désirs."

http://me.hatewasabi.info/
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