No subject

Thu Oct 25 19:26:07 UTC 2012

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 thes=
e
> 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 matt=
er
> 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 ofte=
n
> important for people to seek treatment in the first place. This affects a=
ll
> 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, whil=
e
> the patient is free to create a public blog to talk about their experienc=
e
> of being diagnosed with cancer. The fact that some people choose some lev=
el
> 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 purpose=
s
> 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.o=
rg/mailman/listinfo/open-science>
> Unsubscribe: http://lists.okfn.org/mailman/**options/open-science<http://=
lists.okfn.org/mailman/options/open-science>
>

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=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7
http://daniellombrana.es
http://www.flickr.com/photos/teleyinex
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
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=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7
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 informaci=C3=B3n contenida en =C3=A9l.
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
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=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
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<div dir=3D"ltr"><div><div><div>Hi there,<br><br></div>So I guess the quest=
ion 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. <br>

<br></div>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 hap=
pens with the Creative Commons licenses, as some people will be fine with t=
hat, while other people will be completely against this commercial option.<=
br>

<br></div><div>From my point of view, in regards of personal data, it shoul=
d be up to the owner of the data to choose actually how his/her personal da=
ta are going to be shared and under which terms. Obviously this is not some=
thing trivial to do, but hey, we are discussing here about how we could add=
ress this problem, right?<br>

<br></div><div>Cheers,<br><br>Daniel<br></div></div><div class=3D"gmail_ext=
ra"><br><br><div class=3D"gmail_quote">On Thu, Feb 21, 2013 at 6:42 AM, Hea=
ther Morrison <span dir=3D"ltr">&lt;<a href=3D"mailto:hgmorris at sfu.ca" targ=
et=3D"_blank">hgmorris at sfu.ca</a>&gt;</span> wrote:<br>

<blockquote class=3D"gmail_quote" style=3D"margin:0 0 0 .8ex;border-left:1p=
x #ccc solid;padding-left:1ex">There are benefits and downsides to open sci=
ence, just as there are benefits and downsides to anything. Good planning a=
nd advocacy takes these into account - I agree with Puneet that it is impor=
tant that the open science list discusses privacy and research data. My com=
ments are on the need for privacy and why this does not go away in the onli=
ne environment.<br>

In some ways we have been conducting a society-wide experiment with less pr=
ivacy, 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 ev=
erything with your friends on Facebook is a very different matter from when=
 employers and parents are checking your status updates.<br>

<br>
Confidentiality is considered an essential matter of ethics for a number of=
 professions, and for good reasons.<br>
<br>
The American Medical Association&#39;s page on confidentiality explains why=
:<br>
<br>
&quot;the purpose of a physician&#39;s ethical duty to maintain patient con=
fidentiality 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 phys=
ician will protect the confidential nature of the information disclosed. Fu=
ll disclosure enables the physician to diagnose conditions properly and to =
treat the patient appropriately.&quot; from:<br>

<a href=3D"http://www.ama-assn.org/ama/pub/physician-resources/legal-topics=
/patient-physician-relationship-topics/patient-confidentiality.page" target=
=3D"_blank">http://www.ama-assn.org/ama/<u></u>pub/physician-resources/lega=
l-<u></u>topics/patient-physician-<u></u>relationship-topics/patient-<u></u=
>confidentiality.page</a><br>

<br>
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 pa=
tient.<br>

<br>
Librarians have similar ethical obligations to maintain confidentiality, fo=
r 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.<br>

<br>
The requirement for confidentiality is the responsibility of the profession=
al, not an obligation for the client. If a doctor diagnoses cancer, the doc=
tor 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 diagno=
sed 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 g=
roup where they identify may be unknown, or known only to group members), d=
oes not mean that others will make a similar choice, and does not diminish =
in any way our obligations to respect privacy.<br>

<br>
What does this mean for open data? If data cannot be properly anonymized, t=
hen some kinds of data cannot be completely open. However, there are degree=
s of open, such as open access to data for medical research purposes availa=
ble to anyone at an appropriately accredited medical research organization =
who has completed a recognized ethics review.<br>

<br>
best,<br>
<br>
Heather Morrison<div class=3D"HOEnZb"><div class=3D"h5"><br>
<br>
<br>
<br>
______________________________<u></u>_________________<br>
open-science mailing list<br>
<a href=3D"mailto:open-science at lists.okfn.org" target=3D"_blank">open-scien=
ce at lists.okfn.org</a><br>
<a href=3D"http://lists.okfn.org/mailman/listinfo/open-science" target=3D"_=
blank">http://lists.okfn.org/mailman/<u></u>listinfo/open-science</a><br>
Unsubscribe: <a href=3D"http://lists.okfn.org/mailman/options/open-science"=
 target=3D"_blank">http://lists.okfn.org/mailman/<u></u>options/open-scienc=
e</a><br>
</div></div></blockquote></div><br><br clear=3D"all"><br>-- <br>=C2=B7=C2=
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=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
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=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
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=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7<br>

<a href=3D"http://daniellombrana.es" target=3D"_blank">http://daniellombran=
a.es</a><br><a href=3D"http://www.flickr.com/photos/teleyinex" target=3D"_b=
lank">http://www.flickr.com/photos/teleyinex</a><br>=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
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=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=
=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
=B7<br>

Por favor, NO utilice formatos de archivo propietarios para el<br>intercamb=
io de documentos, como DOC y XLS, sino PDF, HTML, RTF, TXT, CSV<br>o cualqu=
ier otro que no obligue a utilizar un programa de un<br>fabricante concreto=
 para tratar la informaci=C3=B3n contenida en =C3=A9l.<br>

=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=B7=C2=
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