[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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>>
>>
>> --
>> *Sally Deffor
>> Open Data & Privacy Project Coordinator |
>> skype:deffor.selase | @SDeffor | +44 (0)7774 734206
>> <tel:%2B44%20%280%297774%20734206>
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>>
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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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