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

Furyk, Jeremy, Franklin, Richard, Watt, Kerrianne, Emeto, Theophilus, Dalziel, Stuart, McBain-Rigg, Kris, Stepanov, Nikola, and Babl, Franz E. (2018) Community attitudes to emergency research without prospective informed consent: a survey of the general population. Emergency Medicine Australasia, 30 (4). pp. 547-555.

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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.

Item ID: 53071
Item Type: Article (Research - C1)
ISSN: 1742-6723
Keywords: consent; ethics; survey
Copyright Information: © 2018 Australasian College for Emergency Medicine and Australasian Society for Emergency Medicine
Date Deposited: 06 Jun 2018 23:45
FoR Codes: 42 HEALTH SCIENCES > 4203 Health services and systems > 420319 Primary health care @ 50%
42 HEALTH SCIENCES > 4202 Epidemiology > 420210 Social epidemiology @ 50%
SEO Codes: 92 HEALTH > 9202 Health and Support Services > 920203 Diagnostic Methods @ 30%
92 HEALTH > 9205 Specific Population Health (excl. Indigenous Health) > 920501 Child Health @ 70%
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