Qualitative thematic analysis of consent forms used in cancer genome sequencing.

ABSTRACT:

Background

Large-scale whole genome sequencing (WGS) studies promise to revolutionize cancer research by identifying targets for therapy and by discovering molecular biomarkers to aid early diagnosis, to better determine prognosis and to improve treatment response prediction. Such projects raise a number of ethical, legal, and social (ELS) issues that should be considered. In this study, we set out to discover how these issues are being handled across different jurisdictions.

Methods

We examined informed consent (IC) forms from 30 cancer genome sequencing studies to assess (1) stated purpose of sample collection, (2) scope of consent requested, (3) data sharing protocols (4) privacy protection measures, (5) described risks of participation, (6) subject re-contacting, and (7)

SUBMITTER: Allen C 

PROVIDER: S-EPMC3170865 | biostudies-literature | 2011 Jul

REPOSITORIES: biostudies-literature