[open-science] Privacy and open research data

Thu Feb 21 22:30:44 UTC 2013

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
>>>>
>>>>
>>>>
>>>>
>>>> _______________________________________________
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>>>> 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

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