By Stephanie Taplin
Under the National Statement on Ethical Conduct in Human Research (National Statement), HRECs are required to abide by the values of: respect for human beings, research merit and integrity, justice and beneficence. In addition, specific guidance is provided in relation to research with children and young people, with emphasis placed on their capacity to understand what the research entails; their possible coercion by parents, peers, researchers or others to participate in research; and potentially conflicting values and interests of parents and children (p.65). Further safeguards are generally required to undertake research with children and young people, such as institutional approvals and parental consent.
Some authors have commented that there is little transparency about HREC processes and decisions, which are usually not published or shared (see, for example, Lynch, 2018). Little research has been undertaken on HRECs themselves, and the limited studies to date have rarely asked HREC members directly about their role (see, for example Guillemin et al., 2012). Even fewer studies have examined HREC member expertise and decision-making in relation to research with children, which likely contributes to lower levels of transparency and consistency. Furthermore, there is little research exploring the levels of training and experience that HRECs obtain to assist them in making decisions about research with children, nor their views of the research that involves children and young people.
The Managing Ethical Studies on Sensitive Issues (MESSI) study aimed to address some of these research gaps. This paper explores the decision-making of Australian HREC members and HREC managers when considering research applications to conduct social research studies with children (aged 7-14 years) as participants. It focuses on their responses to survey questions about their role, training, processes and recent experiences in reviewing social research studies involving children as research participants, and their views about research with children.
The responses of 229 HREC members and 42 HREC managers to an online survey conducted in 2017 are reported here. HREC members responded in similar proportions to the distribution of HRECs nationally and across Australian states and territories, with the largest proportions from Victoria (21.0%), NSW (28.8%) and Queensland (21.0%).
Most HREC members had received training in research ethics. Only a small minority of members reported having received no formal or informal research ethics training (4.8%); the most common form of training reported was via a conference (63.8%) or specific training on the National Statement (52.0%).
HREC training and guidelines specific to research involving children were rare. The majority (72.9%) of individual HREC members reported they had received no research ethics training specifically related to children’s participation in research. In addition, just over a quarter (26.2%) reported that their HREC had guidelines in addition to the National Statement in relation to research with children. Notably, nearly half the members (44.5%) thought their HREC needed more guidance or training in assessing applications with children.
The majority of applications involving children had to go through a full ethics review, but few adverse events were reported to HRECs regarding the conduct of the studies. Revisions to study proposals requested by HRECs mostly related to consent processes and age-appropriate language.
All HREC members were asked if there were any topics, from a list provided, that they would not, under any circumstances, approve for researchers to study with children (aged 7-14 years). Over one-third (37%) of the HREC members and 46% of those who responded to this question said there were no topics that could not be studied. Of the 56% who nominated topics from the list that they would not approve under any circumstances, the top five topics were: violent extremism/radicalization (24%), child abuse (20%), crime (19%), family violence (15%) and sex/sexuality (14%).
HREC members who responded to the survey were mostly concerned with how the research was conducted. They also recognized some lack of expertise on their own part in relation to research with children and sought more training and resources. By providing specific training and additional guidance and input in relation to the ethical issues in undertaking research with children, HREC members may become more confident and consistent in their ability to make judgements and decisions about research with children. In addition, researchers need to commit to improving their completion of the ethics review processes that outlines age-appropriate research methods and the approaches they will use to address potential risks in their research with children. Greater guidance for and transparency in HREC decision-making, plus increased dialogue between HRECs and researchers, may improve the research ethics review process for research with children.
A majority of research ethics applications involving children as participants were required to go through a full ethics approval process: the extent to which a full ethics review is needed for all research with children, based on the age of the participant rather than the risks involved, is questioned, particularly in view of the fact that most HREC members had limited relevant expertise. While several respondents were concerned about risks and potential distress to the child, it is suggested that their concerns are inflated as very few adverse events were reported. Furthermore, it has been found that any distress from research participation is usually minimal and compensated for by the benefits from facilitating children’s input on issues that affect them, and that children are able to identify risks in research. Most submitted research ethics applications are approved and any required revisions able to be resolved, although the frequency with which they related to consent and adapting language-levels indicates the need for researchers and HRECs to communicate better regarding child-friendly consents.
A message from this study is that the methodological rigor, clear management of risks, and the benefits of any research with children should be more important considerations than the research topic. Researchers and HRECs would benefit from adopting more transparent, child-inclusive and child-friendly processes, with additional training and guidance for HRECs indicated.
References:
Guillemin, M., Gillam, L., Rosenthal, D., & Bolitho, A. (2012). Human Research Ethics Committees: Examining Their Roles and Practices. Journal of Empirical Research on Human Research Ethics, 7(3), 38-49. doi:10.1525/jer.2012.7.3.38
Lynch, H. F. (2018). Opening Closed Doors: Promoting IRB Transparency. The Journal of Law, Medicine & Ethics, 46(1), 145-158. doi:10.1177/1073110518766028
The full article on which this paper is based can be found at:
Taplin, S., Chalmers, J., Brown, J., Moore, T., Graham, A. & McArthur, M. (in press) Human Research Ethics committee experiences and views about children’s participation in research: results from the MESSI Study. Journal of Empirical Research on Human Research Ethics. https://doi.org/10.1177/15562646211048294
This article is one of several published as part of the MESSI study (funded by the Australian Research Council). Other articles from the MESSI study are:
- Moore, T., McArthur, M., Graham, A., Chalmers, J., Powell, M., & Taplin, S. (2020) Children and young people’s decision-making in social research about sensitive issues. Children’s Geographies. 19(6), 689-704. https://doi.org/10.1080/14733285.2020.1866749
- Powell, M., Graham, A., McArthur, M., Moore, T., Chalmers, J., & Taplin, S. (2020) Children’s participation in research on sensitive topics: addressing concerns of decision-makers. Children’s Geographies. 18(3), 325-338. https://doi.org/10.1080/14733285.2019.1639623
- Taplin, S., Chalmers, J., Hoban, B., McArthur, M., Moore, T. & Graham, A. (2019) Children in social research: Do higher payments encourage participation in riskier studies? Journal of Empirical Research on Human Research Ethics. 14(2), 126-140. https://doi.org/10.1177/1556264619826796
- Powell, M., McArthur, M., Chalmers, J., Graham, A., Moore, T., Spriggs, M. & Taplin, S. (2018) Sensitive topics in social research involving children. International Journal of Social Research Methodology. 21(6), 647-660. https://doi.org/10.1080/13645579.2018.1462882
This post may be cited as:
Taplin, S. (30 November 2021) What do HREC members think and do when deciding about children’s participation in social research? Results from the MESSI survey. Research Ethics Monthly. Retrieved from: https://ahrecs.com/what-do-hrec-members-think-and-do-when-deciding-about-childrens-participation-in-social-research-results-from-the-messi-survey/
