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

Lancelot PECQUET (Will Strategy) lpecquet at willstrategy.com
Fri May 2 20:31:27 UTC 2014


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 
> <mailto: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
>     <mailto:pierre.chrzanowski at gmail.com>> wrote:
>
>>     Hi,
>>
>>     There is also datacoup.com <http://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
>>     <mailto: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 <mailto: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
>>             <mailto: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 <tel: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>  <mailto: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  <https://www.ctrlc.hu/%7Estef/otr.txt>
>>>>                 _______________________________________________
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>>>>                 https://lists.okfn.org/mailman/listinfo/mydata-open-data
>>>>
>>>
>>>
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>>
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>>
>>
>>
>>             -- 
>>             *Sally Deffor
>>             Open Data & Privacy Project Coordinator |
>>             skype:deffor.selase | @SDeffor | +44 (0)7774 734206
>>             <tel:%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
>>     <mailto:pierre.chrzanowski at gmail.com>
>>     Skype : pierre.chrzanowski | Twitter : @pzwsk
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>
>
>
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> "Change l'ordre du monde plutôt que tes désirs."
>
> http://me.hatewasabi.info/
>
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