development of an education license or license option for Creative Commons

[Rachel Ellaway <rachel.ellaway AT ed.ac.uk>]

Dear All

I am currently leading a (fairly short-life) project in the UK  
looking at the issues surrounding the sharing and use of clinical  
recordings for non-clinical academic purposes (see  
www.cherri.mvm.ed.ac.uk). Because of the clinical nature of the  
recordings (such as photographs, videos, audio recordings, scans etc)  
there are a number of additional issues/complications to those  
normally encountered in sharing materials.

The key issue is the identifiability of individual patients:  
individuals are often identifiable in these recordings and often in a  
very personal or exposed way. This is bounded by both legal and  
ethical considerations. There are legal requirements for informed  
consent to be acquired before recordings are created and for what  
happens to personal information thereafter. This takes different  
forms in different jurisdictions; in Europe this is covered by  
variants of data protection legislation (eg http:// 
www.informationcommissioner.gov.uk/eventual.aspx?id=34) while in the  
US it is governed by HIPAA (Health Insurance Portability and  
Accountability Act at http://www.hipaa.org/) and so on. There are  
also ethical considerations that require consent rather than just  
assent, for instance if the patient believes that the recording is a  
condition of their treatment. Ownership/copyright is generally  
(although not unilaterally) held by the physician or the clinic/ 
hospital in which the recording was made rather than by the patient  
although the terms of consent absolutely inform how the recording can  
be used.

So how does this relate to Creative Commons?

Currently there are no common frameworks for being able to acquire  
and then subsequently share clinical recordings for academic  
purposes. This means that reuse and exchange is highly problematic  
and is often risky for all concerned. Effectively the same recordings  
are being made again and again locally because of the huge perceived  
problems associated with any alternative. An ideal solution would be  
to have a variation of the (elegantly simple) CC licensing model.  
However ...

Once granted CC licences currently appear to be in perpetuity, not  
limited to select groups and not limited to single jurisdictions  
while data protection and many other legal requirements do require  
limitations of this kind. To apply the CC approach to the clinical  
recordings problem would require (we think) a different license set,  
probably limited to healthcare education/training, that encapsulated  
the terms of consent in a common and simple framework. If possible we  
would like this to happen under the CC banner as the principles would  
still apply and a unified 'honest broker' is required to hold it  
together.

I would very much like to get the community's thoughts on this matter  
(in particular those actually working with clinical recordings in  
this way) and discuss how we might move this forward

with thanks (and apologies for the longish posting)

Rachel Ellaway
e-Learning Manager
MVMLTS
The University of Edinburgh