Evaluating the Consent Preferences of UK Research Volunteers for Genetic and Clinical Studies

• Published in: PloS one Vol. 10; no. 3; p. e0118027
• Main Authors: Kelly, Susan E., Spector, Timothy D., Cherkas, Lynn F., Prainsack, Barbara, Harris, Juliette M.
• Format: Journal Article
• Language: English
• Published: United States Public Library of Science 11.03.2015; Public Library of Science (PLoS)
• Subjects: Adolescent; Adult; Aged; Aged, 80 and over; Bioethics; Biomedical research; Biomedical Research - ethics; Clinical trials; Datasets; Deoxyribonucleic acid; DNA; Epidemiology; Female; Genetic research; Healthy Volunteers - psychology; Humans; Informed consent; Informed Consent - psychology; Internet; Male; Management; Medical information management services; Medical research; Middle Aged; Public health; Research Personnel; Research projects; Studies; Surveys and Questionnaires; United Kingdom; Young Adult; United Kingdom; United Kingdom > UK
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0118027

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. 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. 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 process online instead of face to face. On the whole, respondents did not view their DNA differently from their medical information with regard to the consent process. Research participants were more willing to give broad consent to cover future research if their DNA was to be used by the original researcher than by another researcher, even if the disease under investigation varied, in contrast to the traditional 'gold standard' whereby specific consent is required for all new research projects. In some scenarios, research participants reported that they would be comfortable with not signing a new consent form for future research uses of their data and DNA, and are comfortable with secure, online consent processes rather than traditional face-to-face consent processes. Our findings indicate that the perceived relationship between research participants and researchers plays an important role in shaping preferences regarding the consent process and suggest that this relationship is not captured by traditional consent processes. We argue that the development of new formats of consent should be informed by empirical research on volunteers' perceptions and preferences regarding the consent process.