Together with a consortium of academic and state health
department PI's, the California Public Health Foundation
(CPHF) is assembling a large database for
epidemiological research relating to breast cancer risk
factors. I have been asked to assist the research team in
developing guidelines for access to the database by
outside researchers (e.g. those who are not members of the
consortium). These guidelines will address both access
criteria and procedures for reviewing data requests.
I've found some useful resources on the related topics of
data ownership, funding agency access, transfer of data
when the researchers change institutions, discovery of
research data by litigants, etc. But so far I have had little
success finding sample or model data access guidelines.
I am aware of the PHS Policy Relating to Distribution of
Unique Research Resources (PHS Grants Policy
Statement at 8-25 [April 1994]).
If your institution has any guidelines in this area , I
would appreciate a copy. I would also appreciate any
suggestions on the development of policies in this area,
and any experiences you have had in negotiations over
these kinds of policies with funding agencies.
Thank you.
Jim Simpson
General Counsel
California Public Health Foundation
2001 Addison St., Ste 210
Berkeley, CA 94704
(510) 644-8200
FAX (510) 644-9319
xxxxxx@publichealth.org
PS: This is my first message on the Research
Administration Discussion Group (or for that matter any
electronic bulletin board), so if it doesn't come through right,
please let me know!