How do Research Ethics Committee Members Respond to Hypothetical Studies with Children? Results from the MESSI Study (Papers: Stephanie Taplin, et al

Posted by Dr Gary Allen in Human Research Ethics on April 4, 2022
Keywords: Beneficence, Ethical review, Human research ethics, Research ethics committees, Researcher responsibilities, Respect for persons

The Linked Original Item was Posted On March, 18 2022

Abstract

The research ethics review of projects involving young people/children is never easy. It can become especially problematic when there is a degree of uncertainty as to the risks and to the benefits. When this is the case a reviewing committee may struggle to see how the benefits justify the risks. In practice this requires thinking about the hoped benefits and the anticipated risks. It requires a keen consideration of the strategies to mitigate the risks. This great paper explores the consideration by research ethics committees. This is a useful read for researchers and research ethics reviewers. We have included links to six related items.

Hypothetical scenarios were used to assess the influence of the sensitivity of the study topic, payments, and study methods on research ethics committee (HREC) members’ approval of social research studies involving children. A total of 183 Australian HREC members completed an online survey. The higher the perceived sensitivity of the study topic, the less likely the study would be approved by an HREC member. HREC members were most likely to approve each of the hypothetical studies if no payment was offered. Payment was the most common reason for not approving the low risk studies, while risks were the most common reasons for not approving the more sensitive studies. Face-to-face interviews conducted at home with children elicited substantially higher rates of approval from HREC members with more sensitive study topics. Both HRECs and researchers may benefit from additional guidance on managing risks and payments for children and young people in research.

Keywords:
IRB performance/quality/assessment/evaluation; and burdens of research/ beneficence and nonMaleficence; behavioral social science research; benefits; children and adolescent/pediatrics; decision making capacity/surrogate decision makers; justice/participant selection/inclusion/recruitment; parental consent/child assent; payment for research participation; research ethics committee/IRB review; risks; vignette studies.

Taplin, S., Chalmers, J., Brown, J., Moore, T., & Graham, A. (2022) McArthur M. How do Research Ethics Committee Members Respond to Hypothetical Studies with Children? Results from the MESSI Study. Journal of Empirical Research on Human Research Ethics. 18:15562646221087530. doi: 10.1177/15562646221087530. Epub ahead of print. PMID: 35301891.
Publisher: https://pubmed.ncbi.nlm.nih.gov/35301891/

How do Research Ethics Committee Members Respond to Hypothetical Studies with Children? Results from the MESSI Study - PubMed

These days we don’t usually include papers locked behind a paywall but we felt this one was important enough to include.

Ensuring research involving children with disabilities is inclusive, empowering and safe – what are the critical issues? (Papers: Stephen Thompson, et al | June 2021)

(Australia) Why did a journal suddenly retract a 45-year-old paper over lack of informed consent? – Retraction Watch (Adam Marcus | July 2020)

Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation and Use – UNICEF Office of Research (Stephen Thompson, et al | July 2020)

Research ethics in practice: challenges of using digital technology to embed the voices of children and young people within programs for fathers who use domestic violence (Papers: Katie Lamb, et al | July 2020)

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

‘Autistic voices should be heard.’ Autistic adults join research teams to shift focus of studies – Science (Emily Willingham | April 2020)

(US) This Researcher Exploited Prisoners, Children, and the Elderly. Why Does Penn Honor Him? – The Chronicle of Higher Education (Alexander Kafka, | November 2019)

Should you be worried about paying children to take part in research?

The Ethics of Social Research with Children and Families in Young Lives: Practical Experiences (Book: Virginia Morrow | 2009)

Children in Social Research: Do Higher Payments Encourage Participation in Riskier Studies? (Stephanie Taplin, et al | February 2019)

How We Found Sources for Our Research Misconduct Story — And How You Can Help Us Find More – ProPublica Illinois (Jodi S. Cohen | April 2018)

Should we tell children and young people about the positive experience of taking part in clinical trials? (Papers: Merle Spriggs 2015)

To disclose, or not to disclose? Context matters (Papers: Vasiliki Rahimzadeh, et al 2014)

High risk yet invisible: conflicting narratives on social research involving children and young people, and the role of research ethics committees (Papers: Sarah Parsons et al 2015)

Involving children and young people in research [electronic resource]: A compendium of papers and reflections from a think tank co-hosted by the Australian Research Alliance for Children and Youth and the NSW Commission for Children and Young People

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