Yes, we encounter this issue more and more as we collect more patient-centered biomedical research collections. Personal names are often folder titles for research projects, surgery patients, etc., the content of which are protected by our Personally Identifiable Health Information restriction policy.

 

We edit the finding aid box list to remove personal names, with the intent to re-edit once a restriction expires.

 

Here is an example, in the Bladder Stimulation--Patient Files subseries. Notice we still intellectually arrange contents within appropriate series/subseries.

http://oculus.nlm.nih.gov/cgi/f/findaid/findaid-idx?c=nlmfindaid;id=navbarbrowselink;cginame=findaid-idx;cc=nlmfindaid;view=reslist;subview=standard;didno=kantrowitz572;focusrgn=C01;byte=22479927

 

Similar practices work for personnel files, etc.

 

 

John P. Rees, MA, MLIS

Curator, Archives and Modern Manuscripts

History of Medicine Division, MSC 3819

National Library of Medicine

8600 Rockville Pike

Bethesda, MD 20894

 

 

 

From: Encoded Archival Description List [mailto:[log in to unmask]] On Behalf Of Elizabeth H Dow
Sent: Tuesday, April 21, 2009 9:37 AM
To: [log in to unmask]
Subject: Ethical issues raised by EAD encoding

 

Good morning,

    A few years ago, when I encoded finding aids at the University of Vermont, I became aware that putting inventories on the web had the potential for raising privacy issues to a new level. It's one thing to indicate in a paper finding aid that will sit in a notebook on a shelf of an institution that's open 45 hours a week that one has a list of political donors to a contentious political campaign or a list of participants in a radical theater production or old personnel records for a still-active business, and to announce that information on the web for -- literally -- the world to see and make of it as it will.

    Has anyone else played with this reality as it relates to our professional commitment to protecting third-party privacy? Has anyone experienced unexpected ethical ramifications of having their inventories online?

    I now teach EAD and, having covered the technical issues for the semester, want to expand students' thinking about the non-technical issues related to EAD.

     Thanks in advance for any pithy thoughts and/or case examples.

Elizabeth H. Dow
Associate Professor
School of Library and Information Science
Louisiana State University