What about applying open approach to personal data?

[Pierrot Péladeau]

Hi,

I would like to tap into this discussion list for some ideas and references.

In December, I will participate into phase one of a multi-stakeholders
"Data Dialogues" process that will discuss access to personal
information for research purposes in Canada.
In preparation to it, I would like to look at how can we get the Open
Data perspectives into such discussion.

As you might know, a lot of attention of research ethics in projects
involving human subjects deals mostly with confidentiality related issues.
Under such perspective, it is admitted as a good practice to destroy
sources documents (for instances, interviews recordings and transcripts)
as well as derived data some time after publication of results (five
years, for instance). It is also admitted that data subjects are not
construed as being citizens that could themselves become data users.

As we become information societies, things changes. Research with human
subjects are conducted less from individual researchers and more from
networks, often of international scope. Permanent data warehouses are
being built. Individuals citizens, groups and communities now have from
their pocket or desktop devices access to huge sources of information,
data and computing power. Many individual citizens have becomes the
major producers and users of information and data about themselves and
the people they are in relation with, thus beginning to grasp very
concrete understanding of the political economy of information, and of
personal information in particular. Thus, the ethics, values and norms
in relation to access to personal information for research might have to
change as well. The Open Data perspective might provide an interesting
approach.

Do you have any intuitition or do you know people who have thought about
this?

Thank you,

Pierrot
__________________________________________________________________
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[Pierrot Péladeau]

Thank you Joe Murray for the references. I will look for them.

Already, a shift of focus from individual consent to a governance model
is, indeed, already a better perspective.
But I do not think that it is large enough, still too much research
institution centric. What is need is some "political economy of
information" model, a true eco-system.

There are already experiment of electronic personal patient record where
an individual directly has access to one's own medical record. With
access to a window that shows the data output toward research and
administrative users; a window that shows evidence-based state of
science and medicine items related to one's health condition and
treatments; another window that shows the health providers decisions
with their rationals (including standardized protocols), plus again
another that shows administrative access to scarce resource decision and
rationals (including risks, efficiencies and priorities management).
That individual will have a glimpse of the whole data life cycles. One
could also look at what kind of researches or uses are made from this or
that data warehouse facility. That individual will read those data life
cycles as patient, research subject, tax-payer, citizen, learner,
insured, subject to administrative decision and... data user.

Good research governance might be no longer enough for such citizens.
Being mere well treated research data subjects being told their data is
well manage might no longer suffice: they might want a role in decision
making about research priorities, how their reality is transformed into
data, etc. along the whole cycle down to how medical and administrative
decision affecting people's actual lives are made. More or less blind
confidence in an abstract concept of science will be replace with some
vision of the actual data to decision sausage factory, thus to politics.

Unless a new social contract is progressively developed as data life
cycles becomes more openly transparent to average citizens, the whole
scientific enterprise might suddenly find its foundation on political
quicksand.


Pierrot
__________________________________________________________________
website Persons Information : http://pierrot-peladeau.net/en
phone : [phone]
email : [hidden email]

column Living in Between the Lines :
http://pierrot-peladeau.net/en/section/vell-lbl
weblog Lab Notes : http://pierrot-peladeau.net/en/section/lab

> Message: 1
> Date: Wed, 3 Nov 2010 15:40:03 -0400
> From: Joe Murray<[hidden email]>
> To: [hidden email]
> Subject: Re: [CivicAccess-discuss] CivicAccess-discuss Digest, Vol 40,
> Issue 5
> Message-ID:
> <[hidden email]>
> Content-Type: text/plain; charset=UTF-8
>
> My wife, Professor Lisa Austin at UofT Law, does research on privacy
> law and occasionally does some policy consulting (e.g. to help put
> together the Canadian Judicial Council's electronic access to court
> records policy).
>
> She's been recently getting some good reception amongst medical
> research ethicists to shifting the focus from informed consent to a
> governance model. Part of the issue is that consent is neither
> necessary nor sufficient to protect the privacy issues at stake (see
> some of her publications), and in some cases adequate consent is not
> feasible (e.g. for all the future uses to which tissues submitted to
> tissue banks may be put).
>
> The governance model could provide a more effective way to ensure that
> privacy concerns are addressed while enabling appropriate data
> matching.
>
> Joe Murray, PhD
> President, JMA Consulting
> [hidden email]
> skype JosephPMurray twitter JoeMurray
> 416.466.1281
>
>> Date: Wed, 03 Nov 2010 13:22:30 -0400
>> From: Pierrot P?ladeau<[hidden email]>
>> To: [hidden email]
>> Subject: [CivicAccess-discuss] What about applying open approach to
>> ? ? ? ?personal ? ? ? ?data?
>> Message-ID:<[hidden email]>
>> Content-Type: text/plain; charset=ISO-8859-1; format=flowed
>>
>> Hi,
>>
>> I would like to tap into this discussion list for some ideas and references.
>>
>> In December, I will participate into phase one of a multi-stakeholders
>> "Data Dialogues" process that will discuss access to personal
>> information for research purposes in Canada.
>> In preparation to it, I would like to look at how can we get the Open
>> Data perspectives into such discussion.
>>
>> As you might know, a lot of attention of research ethics in projects
>> involving human subjects deals mostly with confidentiality related issues.
>> Under such perspective, it is admitted as a good practice to destroy
>> sources documents (for instances, interviews recordings and transcripts)
>> as well as derived data some time after publication of results (five
>> years, for instance). It is also admitted that data subjects are not
>> construed as being citizens that could themselves become data users.
>>
>> As we become information societies, things changes. Research with human
>> subjects are conducted less from individual researchers and more from
>> networks, often of international scope. Permanent data warehouses are
>> being built. Individuals citizens, groups and communities now have from
>> their pocket or desktop devices access to huge sources of information,
>> data and computing power. Many individual citizens have becomes the
>> major producers and users of information and data about themselves and
>> the people they are in relation with, thus beginning to grasp very
>> concrete understanding of the political economy of information, and of
>> personal information in particular. Thus, the ethics, values and norms
>> in relation to access to personal information for research might have to
>> change as well. The Open Data perspective might provide an interesting
>> approach.
>>
>> Do you have any intuitition or do you know people who have thought about
>> this?
>>
>> Thank you,
>>
>> Pierrot
>> __________________________________________________________________
>> website Persons Information : http://pierrot-peladeau.net/en
>> phone : [phone]
>> email : [hidden email]
>>
>> column Living in Between the Lines :
>> http://pierrot-peladeau.net/en/section/vell-lbl
>> weblog Lab Notes : http://pierrot-peladeau.net/en/section/lab