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Ethical guidelines for COVID-19 tracing apps – Nature (Jessica Morley, et al | May 2020)0

Posted by Admin in on June 13, 2020
 

Protect privacy, equality and fairness in digital contact tracing with these key questions.

Technologies to rapidly alert people when they have been in contact with someone carrying the coronavirus SARS-CoV-2 are part of a strategy to bring the pandemic under control. Currently, at least 47 contact-tracing apps are available globally (see go.nature.com/2zc1qhk). They are already in use in Australia, South Korea and Singapore, for instance. And many other governments are testing or considering them.

Not really research, but a topical discussion on big data, privacy, consent and respect for persons, which are of significance to research.

Here we set out 16 questions to assess whether — and to what extent — a contact-tracing app is ethically justifiable. These questions could assist governments, public-health agencies and providers to develop ethical apps — they have already informed developments in France, Italy and the United Kingdom. They will also help watchdogs and others to scrutinize such technologies.
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What do COVID-19 contact-tracing apps do? Running on a mobile phone, they inform people that they have spent time near someone with the virus. The contacts should then respond according to local rules, for example by isolating themselves. Prompt alerts are key because the incubation time of the virus is up to two weeks.

Read the rest of this discussion piece

‘It’s never okay to say no to teachers’: Children’s research consent and dissent in conforming schools contexts (Papers: Perpetua Kirby | May 2020)0

Posted by Admin in on June 11, 2020
 

Abstract

With thanks to Dr Jo-Anne Kelder, University of Tasmania for suggesting this great paper.  This is a recommended read for researchers and research ethics reviewers.

This article examines the limits to children giving research consent in everyday school contexts that emphasises their conformity to comply with adult expectations, and highlights children’s competence and agency in navigating this conformity through different practices of dissent. It draws on research into children’s agency, using a multimodal ethnography of Year 1 classrooms in two English primary schools. The article includes a reflexive methodological focus, exploring the extent to which I counter the schools’ emphasis on conformity. This includes creating visuals for children to practice consent; positioning myself as the researcher in a non‐teacher role, as ‘least adult’ and the one who ‘least knows’; and designing interview spaces markedly different from classrooms. The article examines how children navigate conforming discourses by finding different ways to dissent in the research. Firstly, children demonstrate a sophisticated awareness of the cultural norms of indicating refusals beyond saying the word ‘No’. Secondly, children achieve unnoticeablity, by which they absent themselves from the ‘on‐task’ classroom culture, and by extension the research process. Thirdly, they engage in playful dissent, demonstrating their political knowingness of the classroom social order. The article discusses the implications for educational research when the values of consent are in conflict with a schooling focused on conformity. This includes emphasising the limits of consent procedures, paying closer attention to how researchers recognise and respond ethically to children’s multiple practices of dissent, and using research to disrupt problematic power structures in education settings that limit possibilities for children’s consent.

Kirby, P. (2020), ‘It’s never okay to say no to teachers’: Children’s research consent and dissent in conforming schools contexts. British Educational Research Journal. doi:10.1002/berj.3638
Publisher (Open Access): https://onlinelibrary.wiley.com/doi/full/10.1002/berj.3638

Improving communication when seeking informed consent: a randomised controlled study of a computer‐based method for providing information to prospective clinical trial participants (Papers: Asuntha S Karunaratne, et al | 2010)0

Posted by Admin in on May 31, 2020
 

Abstract
Objective:
To assess the efficacy, with respect to participant understanding of information, of a computer‐based approach to communication about complex, technical issues that commonly arise when seeking informed consent for clinical research trials.

Design, setting and participants:
An open, randomised controlled study of 60 patients with diabetes mellitus, aged 27–70 years, recruited between August 2006 and October 2007 from the Department of Diabetes and Endocrinology at the Alfred Hospital and Baker IDI Heart and Diabetes Institute, Melbourne.

Intervention:
Participants were asked to read information about a mock study via a computer‐based presentation (n = 30) or a conventional paper‐based information statement (n = 30). The computer‐based presentation contained visual aids, including diagrams, video, hyperlinks and quiz pages.

Main outcome measures:
Understanding of information as assessed by quantitative and qualitative means.

Results:
Assessment scores used to measure level of understanding were significantly higher in the group that completed the computer‐based task than the group that completed the paper‐based task (82% v 73%; P = 0.005). More participants in the group that completed the computer‐based task expressed interest in taking part in the mock study (23 v 17 participants; P = 0.01). Most participants from both groups preferred the idea of a computer‐based presentation to the paper‐based statement (21 in the computer‐based task group, 18 in the paper‐based task group).

Conclusions:
A computer‐based method of providing information may help overcome existing deficiencies in communication about clinical research, and may reduce costs and improve efficiency in recruiting participants for clinical trials.

Keywords
Ethics and law, Informatics and computers, Statistics, epidemiology and research design

Karunaratne, A.S., Korenman, S.G., Thomas, S.L., Myles, P.S. and Komesaroff, P.A. (2010), Improving communication when seeking informed consent: a randomised controlled study of a computer‐based method for providing information to prospective clinical trial participants. Medical Journal of Australia, 192: 388-392. doi:10.5694/j.1326-5377.2010.tb03561.
Publisher: https://onlinelibrary.wiley.com/doi/abs/10.5694/j.1326-5377.2010.tb03561.x

Friday afternoon’s funny – Summary consent forms are troubling0

Posted by Admin in on May 29, 2020
 

Cartoon by Don Mayne www.researchcartoons.com
Full-size image for printing (right mouse click and save file)

The thinking behind summary forms are just troubling. That we have consent material that are so long and hard to read they require a summary.  And we are okay with that?  And the message potential participants only need to pay close attention to part of a consent document.  Implicit in this is that they doing somethings, such as the full consent document because they have to, not because they are important.

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