Points of contention: Qualitative research identifying where researchers and research ethics committees disagree about consent waivers for secondary research with tissue and data.

ABSTRACT:

Background

This is a multi-method, in-depth, three part qualitative study exploring the regulation and practice of secondary research with tissue and data in a high-income country. We explore and compare the perspectives of researchers, research ethics committees (RECs) and other relevant professionals (e.g. pathologists and clinicians). We focus on points of contention because they demonstrate misalignment between the expectations, values and assumptions of these stakeholders.

Methods

This is a multi-method study using observational research, focus groups and interviews with 42 participants (conducted 2016-2017) and analyzed using thematic analysis.

Results

Results are arranged under the following themes: consent; balancing the social value of the research with conse

SUBMITTER: Ballantyne A 

PROVIDER: S-EPMC7406047 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature