Re: CivicAccess-discuss Digest, Vol 40, Issue 5

[Joe Murray]

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
>
>
> ------------------------------
>
> Message: 2
> Date: Wed, 3 Nov 2010 15:15:25 -0400
> From: "Tracey P. Lauriault" <[hidden email]>
> To: civicaccess discuss <[hidden email]>
> Subject: Re: [CivicAccess-discuss] Importance of true Open Data
>        Licenses
> Message-ID:
>        <AANLkTikvN=kH35gHZQq=[hidden email]>
> Content-Type: text/plain; charset="iso-8859-1"
>
> Here is an analysis from a ChangeCamp 2010 consultation on the City of
> Ottawa Terms of Use -
> http://traceyplauriault.ca/2010/07/21/changecamp-ottawa-2010-open-data-terms-of-use-session/.
>
>
> Also, I have been working with David Fewer & Kent Mewhort at CIPPIC
> (http://www.cippic.ca/)
> since <http://www.cippic.ca/)%20since> the spring 2010 on this issue.  They
> have written a report which examines the Canada Open Data City terms of
> use and it will be posted onto their website shortly.  I will let you know
> when it does.
>
> The Cities recognize the shortcomings of their terms of use, have
> acknowledged citizen input and CIPPIC is doing a bit more analysis on some
> outstanding items and will be preparing a toolkit for new up and coming Open
> Data cities who will want to understand these issues and also for NGOs
> learning about user agreements.
>
> I facilitated and convened a meeting at the City of Ottawa with the City of
> Edmonton; City of Vancouver; City of Toronto; City of Montreal and CIPPIC
> explicitly on the Terms of Use.  The G4+1 as they are now called have this
> as a key item to address along with standards, catalogs and other outreach
> activities.
>
> These cities are to be lauded for their efforts to get stuff out the door
> quickly, and especially for being willing to take a second sober look at
> their terms of use and willing to work with the results from teh CIPPIC
> reports.  Should they accept the findings of the report, they will go back
> to their respective legal teams and modify their Terms of Use in their
> respective cities. The City of Montreal which is not yet an Open Data city
> was on that call and is benefiting early on from a more Open Government
> Principles terms of use license.
>
> It is important that Open Street Map, Glen, and others on the list vocalize
> the issues they see as that knowledge then gets /or can get used to better
> inform decisions.
>
> I took the issues identified on this list, comments on other lists, and
> literature primarily from Science, geomatics and Public Sector Information
> access to CIPPIC and to the City of Ottawa before the City became Open Data
> City and this is what has led to this very productive meeting in Ottawa a
> few weeks ago to discuss that item and the CIPPIC report.
>
> As soon as the report is up on the CIPPIC site I will point to it.
>
> Cheers
> t
>
> On Wed, Nov 3, 2010 at 12:41 PM, Morgen Peers <[hidden email]> wrote:
>
>> the data licenses aren't true open data licenses. but. is it possible for
>> the current licensing of each city's data to be "incorrect" or "short" of
>> its aims, as originally conceived when motions were passed, et al? rather
>> than arguing from a position of shortcomings (i am not suggesting you were
>> Glen - i have not read your pieces), what advantages are inherent to slowly
>> emerging agreements and the affirmation of 'true' principles well understood
>> by Council, et al? in evolutionary terms, it is perhaps more effective to
>> revisit the issue and have it looked at several times. this should enable
>> managers of institutions to intimate the procedural values related to open
>> data. from there true engendering of the principles becomes possible. i say
>> this about cities. i'd likely say something else about federal levels of
>> data, seeing as there are no internal parallels or partners in sharing those
>> types of national data and hence less or no opportunities for adjustments
>> based on peer consensus/revisiting.
>>
>> On Wed, Nov 3, 2010 at 12:00 PM, <
>> [hidden email]> wrote:
>>
>>> Send CivicAccess-discuss mailing list submissions to
>>>        [hidden email]
>>>
>>> To subscribe or unsubscribe via the World Wide Web, visit
>>>
>>>        http://lists.pwd.ca/mailman/listinfo/civicaccess-discuss
>>> or, via email, send a message with subject or body 'help' to
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>>>
>>> You can reach the person managing the list at
>>>        [hidden email]
>>>
>>> When replying, please edit your Subject line so it is more specific
>>> than "Re: Contents of CivicAccess-discuss digest..."
>>>
>>>
>>> Today's Topics:
>>>
>>>   1. Nature: Researchers launch hunt for       endangered data
>>>      (Tracey P. Lauriault)
>>>   2. Re: Nature: Researchers launch hunt for endangered data
>>>      (Glen Newton)
>>>   3. Importance of true Open Data Licenses (Glen Newton)
>>>   4. Re: Importance of true Open Data Licenses (Tracey P. Lauriault)
>>>   5. Re: Importance of true Open Data Licenses (Karl Dubost)
>>>
>>>
>>> ----------------------------------------------------------------------
>>>
>>> Message: 1
>>> Date: Wed, 3 Nov 2010 09:10:43 -0400
>>> From: "Tracey P. Lauriault" <[hidden email]>
>>> To: civicaccess discuss <[hidden email]>
>>> Subject: [CivicAccess-discuss] Nature: Researchers launch hunt for
>>>        endangered data
>>> Message-ID:
>>>        <[hidden email]<AANLkTikERGuqVRRy1HPCSN%[hidden email]>
>>> >
>>> Content-Type: text/plain; charset="iso-8859-1"
>>>
>>> Nature: Researchers launch hunt for endangered data
>>> http://www.nature.com/news/2010/101102/full/468017a.html
>>>
>>> In Canada the story is the same.  Research data have no home once
>>> collected,
>>> state funded research data are not archived, Library and Archives Canada
>>> does not have a data repository.  We have a small network of repositories
>>> in
>>> some research libraries in Canada but these primarily ingest research
>>> papers
>>> and not so much the data.  Funding agencies do not mandate data management
>>> except for the International Polar Year (IPY) project -
>>> http://www.ipy-api.gc.ca/pg_IPYAPI_052-eng.html.
>>> --
>>>
>>> Tracey P. Lauriault
>>> 613-234-2805
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>>>
>>> ------------------------------
>>>
>>> Message: 2
>>> Date: Wed, 3 Nov 2010 10:03:00 -0400
>>> From: Glen Newton <[hidden email]>
>>> To: civicaccess discuss <[hidden email]>
>>> Cc: "Broome, John" <[hidden email]>, "Zborowski, Mary"
>>>        <[hidden email]>
>>> Subject: Re: [CivicAccess-discuss] Nature: Researchers launch hunt for
>>>        endangered data
>>> Message-ID:
>>>        <AANLkTimEo8Obi8zhs+Mx=[hidden email]>
>>> Content-Type: text/plain; charset=UTF-8
>>>
>>> Yes, this is excellent news!
>>>
>>> This initiative was supported by the Canadian National Committee for
>>> CODATA (http://www.codata.org/canada/) [I am a CNC/CODATA committee
>>> member]. One of the drivers behind this project (Elizabeth Griffith)
>>> is a Canadian:
>>> "The inventory is the brainchild of Elizabeth Griffin, an astronomer
>>> at the [NRC] Herzberg Institute of Astrophysics in Victoria, Canada,
>>> and William Anderson, an information specialist at the University of
>>> Texas at Austin and an associate editor of the Data Science Journal.
>>> Both will serve on the task group with ten other scientists. "
>>>
>>> CNC/CODATA is always looking for individuals and organizations for
>>> collaboration, and participation at our annual meeting. If you are
>>> interested, please contact me or John Broome (Chair) or Mary Zborowski
>>> (Executive Secretary) [hidden email]
>>>
>>> Glen Newton
>>> http://zzzoot.blogspot.com/
>>> Scientific Digital Archiving & Software Consultant
>>>
>>> On Wed, Nov 3, 2010 at 9:10 AM, Tracey P. Lauriault <[hidden email]>
>>> wrote:
>>> > Nature: Researchers launch hunt for endangered data
>>> > http://www.nature.com/news/2010/101102/full/468017a.html
>>> >
>>> > In Canada the story is the same.? Research data have no home once
>>> collected,
>>> > state funded research data are not archived, Library and Archives Canada
>>> > does not have a data repository.? We have a small network of
>>> repositories in
>>> > some research libraries in Canada but these primarily ingest research
>>> papers
>>> > and not so much the data.? Funding agencies do not mandate data
>>> management
>>> > except for the International Polar Year (IPY) project -
>>> > http://www.ipy-api.gc.ca/pg_IPYAPI_052-eng.html.
>>> > --
>>>
>>> > Tracey P. Lauriault
>>> > 613-234-2805
>>> >
>>> >
>>> >
>>> > _______________________________________________
>>> > CivicAccess-discuss mailing list
>>> > [hidden email]
>>> > http://lists.pwd.ca/mailman/listinfo/civicaccess-discuss
>>> >
>>>
>>>
>>>
>>> --
>>>
>>> -
>>>
>>>
>>> ------------------------------
>>>
>>> Message: 3
>>> Date: Wed, 3 Nov 2010 10:26:34 -0400
>>> From: Glen Newton <[hidden email]>
>>> To: civicaccess discuss <[hidden email]>,   GOSLING
>>>        members in Ottawa <[hidden email]>
>>> Subject: [CivicAccess-discuss] Importance of true Open Data Licenses
>>> Message-ID:
>>>        <[hidden email]>
>>> Content-Type: text/plain; charset=UTF-8
>>>
>>>
>>> In the summer, I blogged
>>> (
>>> http://zzzoot.blogspot.com/2010/07/its-not-open-data-so-stop-calling-it.html
>>>
>>> http://zzzoot.blogspot.com/2010/08/what-is-open-gov-data-sunlight.html)about
>>> the importance of having a truly open data license, and railed about
>>> how the gaggle of Canadian cities that were busily being touted by the
>>> data fanboys were only releasing free data, not Open Data. I pointed
>>> out the risks to developers and SMEs, given the right to arbitrary
>>> banning from use of the data sets.
>>> Yet most feedback I got was that I was being a pedantic Open license
>>> fascist, and that the release of these data were more important than
>>> "getting it right".
>>>
>>> I think the latest news ("UK's National Rail Shuts Down Free Timetable
>>> App" - slashdot
>>>
>>> http://yro.slashdot.org/story/10/11/02/2344230/UKs-National-Rail-Shuts-Down-Free-Timetable-App
>>> )
>>> and original posting ("National Rail Have Killed My UK Train Times
>>> App"
>>> http://mocko.org.uk/b/2010/10/29/national-rail-have-killed-my-train-times-app/
>>> )
>>> shows just how fragile things are when you don't have a real Open Data
>>> license. Read the article. We will be hearing more of these sorts of
>>> things. It is the future without Open Data licensing.
>>>
>>> -Glen
>>>
>>>
>>>
>>>
>>>
>>> --
>>>
>>> -
>>>
>>>
>>> ------------------------------
>>>
>>> Message: 4
>>> Date: Wed, 3 Nov 2010 10:34:30 -0400
>>> From: "Tracey P. Lauriault" <[hidden email]>
>>> To: civicaccess discuss <[hidden email]>
>>> Cc: GOSLING members in Ottawa
>>>        <[hidden email]>
>>> Subject: Re: [CivicAccess-discuss] Importance of true Open Data
>>>        Licenses
>>> Message-ID:
>>>        <AANLkTincZry9px28GFo=[hidden email]>
>>> Content-Type: text/plain; charset="iso-8859-1"
>>>
>>>
>>> I would just call you thorough!
>>>
>>> On Wed, Nov 3, 2010 at 10:26 AM, Glen Newton <[hidden email]>
>>> wrote:
>>>
>>> > In the summer, I blogged
>>> > (
>>> >
>>> http://zzzoot.blogspot.com/2010/07/its-not-open-data-so-stop-calling-it.html
>>> >
>>> >
>>> http://zzzoot.blogspot.com/2010/08/what-is-open-gov-data-sunlight.html)about
>>> <
>>> http://zzzoot.blogspot.com/2010/08/what-is-open-gov-data-sunlight.html%29about>
>>>
>>>
>>> > the importance of having a truly open data license, and railed about
>>> > how the gaggle of Canadian cities that were busily being touted by the
>>> > data fanboys were only releasing free data, not Open Data. I pointed
>>> > out the risks to developers and SMEs, given the right to arbitrary
>>> > banning from use of the data sets.
>>> > Yet most feedback I got was that I was being a pedantic Open license
>>> > fascist, and that the release of these data were more important than
>>> > "getting it right".
>>> >
>>> > I think the latest news ("UK's National Rail Shuts Down Free Timetable
>>> > App" - slashdot
>>> >
>>> >
>>> http://yro.slashdot.org/story/10/11/02/2344230/UKs-National-Rail-Shuts-Down-Free-Timetable-App
>>> > )
>>> > and original posting ("National Rail Have Killed My UK Train Times
>>> > App"
>>> >
>>> http://mocko.org.uk/b/2010/10/29/national-rail-have-killed-my-train-times-app/
>>> > )
>>> > shows just how fragile things are when you don't have a real Open Data
>>> > license. Read the article. We will be hearing more of these sorts of
>>> > things. It is the future without Open Data licensing.
>>> >
>>> > -Glen
>>> >
>>> >
>>> >
>>> >
>>> >
>>> > --
>>> >
>>> > -
>>> > _______________________________________________
>>> > CivicAccess-discuss mailing list
>>> > [hidden email]
>>> > http://lists.pwd.ca/mailman/listinfo/civicaccess-discuss
>>> >
>>>
>>>
>>>
>>> --
>>>
>>> Tracey P. Lauriault
>>> 613-234-2805
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>>> ------------------------------
>>>
>>> Message: 5
>>> Date: Wed, 3 Nov 2010 10:46:15 -0400
>>> From: Karl Dubost <[hidden email]>
>>> To: Glen Newton <[hidden email]>
>>> Cc: civicaccess discuss <[hidden email]>
>>> Subject: Re: [CivicAccess-discuss] Importance of true Open Data
>>>        Licenses
>>> Message-ID: <[hidden email]>
>>> Content-Type: text/plain; charset=utf-8
>>>
>>>
>>>
>>> Le 3 nov. 2010 ? 10:26, Glen Newton a ?crit :
>>> > Yet most feedback I got was that I was being a pedantic Open license
>>> > fascist, and that the release of these data were more important than
>>> > "getting it right".
>>>
>>> now you can reply you were "pedantically right about it" ;)
>>>
>>> ------------------------------
>>>
>>> _______________________________________________
>>> CivicAccess-discuss mailing list
>>> [hidden email]
>>> http://lists.pwd.ca/mailman/listinfo/civicaccess-discuss
>>>
>>> End of CivicAccess-discuss Digest, Vol 40, Issue 3
>>> **************************************************
>>>
>>
>>
>> _______________________________________________
>> CivicAccess-discuss mailing list
>> [hidden email]
>> http://lists.pwd.ca/mailman/listinfo/civicaccess-discuss
>>
>
>
>
> --
> Tracey P. Lauriault
> 613-234-2805
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> [hidden email]
> http://lists.pwd.ca/mailman/listinfo/civicaccess-discuss
>
> End of CivicAccess-discuss Digest, Vol 40, Issue 5
> **************************************************
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