paperKB
coga / coga-kb
Processing
Help
Sign in

Chunk #47 — PART II. CORE QUESTIONS — D. If Data and Samples Can Be Re-identified, Are There Any Biobank Research System Responsibilities to Offer Return of IFs and IRRs? — The ethics of return in biobank research systems

Source
Managing incidental findings and research results in genomic research involving biobanks and archived data sets.
Embedded
yes

Text

Data Access Committee (DAC) or equivalent using explicit access criteria, negotiation may ensue over the terms of access, and access will be governed by an agreement, typically a Material Transfer Agreement (MTA) or Data Access Agreement (DAA) (sometimes called a Data Use Agreement (DUA)). Thus, the biobank will have to determine prospectively the conditions of access and terms of these agreements. Terms already in use and relevant to the IFs/IRRs debate are that the secondary researcher will not seek to re-identify contributors and that research results will be returned to the biobank.78–81