[open-science] Privacy and open research data

Thu Feb 21 16:51:35 UTC 2013

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
>>
>>
>>
>>
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>
>
>
> --
>
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> http://daniellombrana.es
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> 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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