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

Fri May 2 22:34:25 UTC 2014

I found the idea of such a calculator inline with the discussion.
Bookmarking It here meant just this, not that I am vouching for some
fantasmagoric pricing :)

Best,
Rayna
Le 2 mai 2014 22:29, "Lancelot PECQUET (Will Strategy)" <
lpecquet at willstrategy.com> a écrit :

>  Hi Rayna, Hello everyone,
>
> I find this FT calculator particularly misleading.
>
> First, because it suggests that there is a precise (three decimal
> places...),
> unique way to measure how much personal data is worth , regardless of
> how businesses, governments or others will use it, which is, of course, a
> complete nonsense.
>
> Second, because it conveys the idea that personal data has little value
> (from $0.007 to $4.99 max for a pregnant banker who owns a house, a boat,
> a plane and has extremely poor health condition...).
>
> It suggests for instance that disclosing your heart disease, high blood
> pressure
> or obesity "is only worth $0.26" (whatever that means).
>
> Many people conclude (I have tested this FT calculator on several
> audiences) that,
> "after all, if this piece of information represents only $0.26, there is
> no need to
> worry about protecting it".
>
> Well, as Steph said a few weeks ago if I remember correctly: "once the
> toothpaste
> is out, you cannot put it back".
>
> Best,
>
> Lancelot
>
>
>  Le 02/05/2014 18:07, Rayna a écrit :
>
> 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 <01.05.2014%2012>: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 Deffor Open 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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