[open-science] Privacy and open research data

Thu Feb 21 07:33:26 UTC 2013

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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