Community attitudes to emergency research without prospective informed consent: A survey of the general population

Abstract

Objective: To give voice to the general public's views of prospective and retrospective (deferred) consent in the emergency research setting.

Methods: A cross-sectional, stratified population-based, telephone survey was conducted in April to July 2016. A questionnaire consisting of standardised health and demographic details, and seven specifically designed, and pilot-tested questions, five closed and two open text, based on literature review and previous surveys in the field was used. Quantitative and qualitative techniques were used in the data analysis. This was a centrally coordinated national telephone survey in Australia, the 2016 National Social Survey, coordinated by Central Queensland University. Data for 1217 adult (18+ years) participants were included in the analysis, with a response rate of 26%. The sample demographics were broadly representative of the Australian population.

Results: The majority of respondents were supportive of research in emergency circumstances without prospective informed consent. However, the type of research and level of risk influence its acceptability. Common themes in qualitative analysis included the critical or life-threatening nature of the illness being researched, and the potential harms and benefits of participation.

Conclusions: This research provided the first opportunity for the community to contribute to discourse about prospective and retrospective (deferred) consent in the emergency research setting in Australia. Further work is needed to determine community expectations of how this process can be optimised and implemented, and to identify potential situations where this may not be acceptable.

Keywords: consent; ethics; survey.