3.3 Privacy Interests and Confidentiality of Research Data

Last Revised 1/21/2024

1.0 Purpose

The purpose of this policy is to describe the Organization’s requirements for 1) protection of privacy interests of research subjects, and 2) maintenance of confidentiality of data. For the purposes of this policy “subjects” and “participants” are synonymous, and includes those persons participating in a data registry or biobank.


2.0 Policy

It is the policy of the Organization that:


3.0 Definitions


4.0 Protection of Privacy


5.0. Protection of Confidentiality


DOCUMENT HISTORY:

 Written: 1/28/2016 (Approved: 1/28/2016) - original author not recorded

 Revised: 2/2/2018 - revision not documented

 Revised: 9/22/2022 - Stylistic changes, and changes for clarity; clarified privacy requirements regarding informed consent process; clarified applicability of CoC and consent form language during interruption in or termination of NIH funding; added acknowledgement of CoCs issued by agencies other than NIH.

 Revised: 1/21/2024 – added definition of “identifiable sensitive information” (section 3.5); elaborated on types of research which are automatically issued a CoC by NIH (section 5.2).


Revision #13
Created 24 October 2019 21:30:34 by Autumn M Eberly
Updated 17 April 2025 15:49:54 by Robert A Lewis