Evaluating the consent preferences of UK research volunteers for genetic and clinical studies.

ABSTRACT:

Objectives

To establish the views of research volunteers on the consent process; to explore their views on the consent process in different research scenarios; to inform debate on emerging models of consent for participation in research.

Design, setting and participants

2,308 adult volunteers from the TwinsUK Registry (www.twinsuk.ac.uk) completed an online survey about their views on the consent process for use of their DNA and medical information in research. Their views on the re-consenting process in different scenarios were assessed.

Results

The majority of volunteers preferred to be informed of the identity of the main researcher of a study in which they are participating, which is contrary to current practice. Over 80% were willing to complete the consent proce

SUBMITTER: Kelly SE 

PROVIDER: S-EPMC4356519 | biostudies-literature | 2015

REPOSITORIES: biostudies-literature