[open-science] Privacy and open research data

Thu Feb 21 18:09:28 UTC 2013

Hello everyone, I've created a bitly 'link bundle' gathering together these
and other links on material (blogs / PhD theses / articles / software) that
relates the 'data jigsaw' effect - combining datasets to re-identify them:

http://bitly.com/bundles/o_32j6opkf8t/2

     Sam Leach

On 21 February 2013 16:51, Carl Boettiger <cboettig at gmail.com> wrote:

> This is an interesting thread.  To add to the list of personal medical
> information and endangered species, we may as well add security risks too,
> such as the much publicized debate over whether or not to publish the paper
> on mutant flu, http://www.nature.com/news/specials/mutantflu/index.html.
>  I mention this partly to highlight that this is not so much of a challenge
> for "open science" but for science in general.
>
> The open science agenda largely discusses removing barriers of costs and
> institutional connections that inhibit more equal sharing, whether in data
> or publication (in Nick Barnes words, the powerful have access).  I find
> the analogies between open science and personal sharing on facebook
> completely spurious.  When the scientific community decides something is
> appropriate to publish in the international scientific literature, as they
> did after careful consideration in the case of the mutant flu, then it
> should be made open.  Security clearances, not cost or personal
> connections, should protect secure data.  Sensitive data is a challenge for
> the whole scientific community, not just open science.
>
> Just my perspective. thanks to others in thread for sharing theirs.
>
> - Carl
>
>
> On Wed, Feb 20, 2013 at 11:33 PM, Daniel Lombraña González <
> teleyinex at gmail.com> wrote:
>
>> Hi there,
>>
>> So I guess the question here is how do we allow to open data sets to have
>> different degrees of privacy. This is quite similar to the Creative Commons
>> licenses where some people do like them because you have different levels
>> of freedom to choose how do you want to share your data and under which
>> conditions.
>>
>> Thus, it may be interesting to create a set of open data licenses that
>> will have different levels of privacy accordingly, so the in case of
>> patients they will actually choose how much do they want to share and how,
>> even specifying if the data could be used for commercial benefits as it
>> happens with the Creative Commons licenses, as some people will be fine
>> with that, while other people will be completely against this commercial
>> option.
>>
>> From my point of view, in regards of personal data, it should be up to
>> the owner of the data to choose actually how his/her personal data are
>> going to be shared and under which terms. Obviously this is not something
>> trivial to do, but hey, we are discussing here about how we could address
>> this problem, right?
>>
>> Cheers,
>>
>> Daniel
>>
>>
>> On Thu, Feb 21, 2013 at 6:42 AM, Heather Morrison <hgmorris at sfu.ca>wrote:
>>
>>> There are benefits and downsides to open science, just as there are
>>> benefits and downsides to anything. Good planning and advocacy takes these
>>> into account - I agree with Puneet that it is important that the open
>>> science list discusses privacy and research data. My comments are on the
>>> need for privacy and why this does not go away in the online environment.
>>> In some ways we have been conducting a society-wide experiment with less
>>> privacy, and there are indications that the heady early days of free
>>> personal sharing online without a care in the world are past their peak.
>>> Sharing everything with your friends on Facebook is a very different matter
>>> from when employers and parents are checking your status updates.
>>>
>>> Confidentiality is considered an essential matter of ethics for a number
>>> of professions, and for good reasons.
>>>
>>> The American Medical Association's page on confidentiality explains why:
>>>
>>> "the purpose of a physician's ethical duty to maintain patient
>>> confidentiality is to allow the patient to feel free to make a full and
>>> frank disclosure of information to the physician with the knowledge that
>>> the physician will protect the confidential nature of the information
>>> disclosed. Full disclosure enables the physician to diagnose conditions
>>> properly and to treat the patient appropriately." from:
>>> http://www.ama-assn.org/ama/**pub/physician-resources/legal-**
>>> topics/patient-physician-**relationship-topics/patient-**
>>> confidentiality.page<http://www.ama-assn.org/ama/pub/physician-resources/legal-topics/patient-physician-relationship-topics/patient-confidentiality.page>
>>>
>>> Knowing that confidentiality is a matter of ethics for the doctor is
>>> often important for people to seek treatment in the first place. This
>>> affects all of us, because medical conditions often affect other people
>>> besides the patient.
>>>
>>> Librarians have similar ethical obligations to maintain confidentiality,
>>> for similar reasons. It is important that people trust us enough to seek
>>> help finding answers to questions that they do not want to make public.
>>>
>>> The requirement for confidentiality is the responsibility of the
>>> professional, not an obligation for the client. If a doctor diagnoses
>>> cancer, the doctor has a duty to keep this information confidential, while
>>> the patient is free to create a public blog to talk about their experience
>>> of being diagnosed with cancer. The fact that some people choose some level
>>> of publicness (some patients may choose a more semi-public route like
>>> joining a support group where they identify may be unknown, or known only
>>> to group members), does not mean that others will make a similar choice,
>>> and does not diminish in any way our obligations to respect privacy.
>>>
>>> What does this mean for open data? If data cannot be properly
>>> anonymized, then some kinds of data cannot be completely open. However,
>>> there are degrees of open, such as open access to data for medical research
>>> purposes available to anyone at an appropriately accredited medical
>>> research organization who has completed a recognized ethics review.
>>>
>>> best,
>>>
>>> Heather Morrison
>>>
>>>
>>>
>>>
>>> ______________________________**_________________
>>> open-science mailing list
>>> open-science at lists.okfn.org
>>> http://lists.okfn.org/mailman/**listinfo/open-science<http://lists.okfn.org/mailman/listinfo/open-science>
>>> Unsubscribe: http://lists.okfn.org/mailman/**options/open-science<http://lists.okfn.org/mailman/options/open-science>
>>>
>>
>>
>>
>> --
>>
>> ··························································································································································
>> http://daniellombrana.es
>> http://www.flickr.com/photos/teleyinex
>>
>> ··························································································································································
>> Por favor, NO utilice formatos de archivo propietarios para el
>> intercambio de documentos, como DOC y XLS, sino PDF, HTML, RTF, TXT, CSV
>> o cualquier otro que no obligue a utilizar un programa de un
>> fabricante concreto para tratar la información contenida en él.
>> ··························································································································································
>>
>>
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>>
>
>
> --
> Carl Boettiger
> UC Santa Cruz
> http://www.carlboettiger.info/
>
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-- 
Samuel Leach
Mobile: +44(0)7447515032
slea.ch
@samuelleach
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