Community attitudes to emergency research without prospective informed consent: a survey of the general population
Journal Publication ResearchOnline@JCUAbstract
Objective: To improve understanding of the general public’s views about prospective and retrospective (deferred) consent in the emergency research setting. Design: 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. Quantitative and qualitative techniques were used in data analysis. Setting: Centrally coordinated national telephone survey in Australia, the 2016 National Social Survey coordinated by Central Queensland University Participants: 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 with the type of research proposed influencing acceptability. Common themes in qualitative analysis included: the critical or life threatening nature of the illness being researched, and the potential harm and potential benefits of participation. Conclusions: There is broad support within the general public to the concept of emergency research without prospective informed consent. More data is needed to determine community expectations of how this process can be optimised, and potential situations where this may not be acceptable.
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30
ISBN/ISSN
1742-6723
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Issue
4
Pages Count
9
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Publisher
Wiley-Blackwell
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DOI
10.1111/1742-6723.12958