[open-science] Privacy and open research data

[Heather Morrison]

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