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

[Rayna]

Speaking of health data, privacy and fake data:
http://www.wired.co.uk/news/archive/2014-05/02/urine-analysis-hoax
Which begs for two often overlooked factors to be taken into account:
quantified self and personalized medicine.

Wishing you a sunny Sunday,
Rayna


2014-05-04 12:52 GMT+02:00 Mark L <mark.lizar at gmail.com>:

> Hi Lancelot,
>
> Thanks for your excellent points.
>
> On 3 May 2014, at 16:03, Lancelot PECQUET (Will Strategy) <
> lpecquet at willstrategy.com> wrote:
>
>  Hi Mark,
>
> We know that there are wholesale markets (and therefore market price) of
> personal
> data out there.
>
> Personal data has mostly been used as a commodity so far (and priced as
> such, i.e. low),
> e.g. for "basic" targeted advertizing but it is *not* a commodity as soon
> as organizations
> are able to extract more value from it.
>
> Suppose that an insurance company gets full access to the personal data
> of its clients. This company can update its risk model, terminate the
> contracts
> of people with risky profiles (or outrageously increase their price) and
> offer the
> best price to the "good clients" (whose probability of having an accident
> or a
> disease is low).
>
>
> In this scenario it appears that insurance companies either illegally get
> access to personal data, or are in need of regulation.
>
>
>
> Considering this would provide a very strong competitive advantage + very
> high profit,
> how much would this company be willing to pay for this dataset? I would
> say more
> than $0.26 per client (as suggests FT's calculator).
>
> Regarding the toothpaste metaphor, I would not push it as far as you :
> some personal
> data remain "valuable" for a long period of time (i.e. as long as you are
> alive and possibly after if the data also concerns your relatives).
>
>
> Yes, there is the sensitive personal information (health data), which is
> protected in every jurisdiction with privacy legislation.  If insurance
> companies use this to increase premiums illegally, they are and I believe
> will be liable for this in the future.
>
>
> For instance, once the insurance company has learned its client has
> diabetes, it can
> use this piece of information (and all other data that suggest an
> evolution of his/her health
> condition) to discriminate him/her (and relatives of course : if an
> immediate relative -
> parent, brother, sister, son or daughter - has type 1 diabetes, one's risk
> of developing
> type 1 diabetes is 10 to 20 times the risk of the general population<http://www.joslin.org/info/genetics_and_diabetes.html>
> ).
>
>
> Again, transparency over the data insurance companies use, via subject
> access requests and the like, will make insurance companies liable.
>
> As long as people still believe their personal data has little value and
> that there is no need
> to worry about because they have "nothing to hide", data is being
> collected silently,
> and irreversibly.
>
>
>
> I am not sure people think their data has little value, again, I think it
> depends on context.  I would think that people are deceived by the services
> they use into providing data. In fact, the existing law is suppose to
> protect people from such things and their is still some trust in the
> market.
>
> In another sense, people often lie and change their data or mis represent
> their data online to insulate against such things.  I can imagine a future
> where their are certified data sets, in that people themselves self assert
> data is correct, and where people dispute or make illegitimate data that
> they do not approve of.
>
> It is not so difficult to make fake data about ones self.    I would say
> that the perception that my data is out there and that it is too late is
> wrong, the thought that there is nothing I can do about it,  is a bit of
> misnomer.
>
> There are things we can do about it.
>
> Kind Regards,
>
> Mark
>
>
> L
>
>
>
>  Le 03/05/2014 11:33, Mark L a écrit :
>
> Hi Lancelot.
>
>  Thanks for putting forward the misleading nature of this.   Personal
> data is inevitable much more value in the personal sense and in that regard
> more valuable to some people I know rather than some people who don’t care
> about me at all.  This is a socio-political issues, in that depending on
> where you are on the pecking order in your various social strata depends on
> who your personal data is valuable too and why.
>
>  The fact that some corporation will buy this data wholesale for little
> or great value is a non-sequitor.
>
>  As that saying goes :
> After the tooth paste is out of the tube it gets old really quick and very
> soon gets hard and unusable.  Same thing with personal data.  What is
> valuable to the corporations is the intention data, the predictive data.
>  So far we are still in control of our choices.
>
>  We also can make our data is always to old or expensive to maintain on
> purpose, to keep that corporate data value low, with very little effort by
> altering it just a a little.   So, wether we can pull our data back or not
> is just the tip of the issue at the moment.
>
>  In my opinion, the lower the monitory value the higher the personal
> value to the individual.
>
>  - Mark
>
>
>
>   On 2 May 2014, at 21:31, Lancelot PECQUET (Will Strategy) <
> lpecquet at willstrategy.com> wrote:
>
> Well, as Steph said a few weeks ago if I remember correctly: "once the
> toothpaste
> is out, you cannot put it back".
>
>
>
>
>
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>


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