[open-science] Privacy and open research data

Thu Feb 21 22:54:18 UTC 2013

Indeed, nicely done Sam. Probably should add Ken Thompson's classic "Reflections on trusting trust" to this.

On Feb 21, 2013, at 2:30 PM, "Song, Stephen" <stephen.song at gmail.com> wrote:

> That is a veritable treasure trove of resources. Thanks Sam!
> 
> -Steve
> 
> On 21 February 2013 14:09, Samuel Leach <samuel.leach at gmail.com> wrote:
>> 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
>>>>> 
>>>>> 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
>>>>> Unsubscribe: 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
> 
> 
> 
> -- 
> Steve Song
> +1 902 529 0046
> +27 83 482 2088 (SMS only)
> http://manypossibilities.net
> http://villagetelco.org
> 
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