Researchers´ arguments and ethical boards’ decisions concerning children’s participation in research about child abuse and neglect – right to participate, benefits and risks
In recent years, the interest in including children and adolescents as active participants in research on violence and abuse has increased. This implies ethical responsibilities for the researchers and formal ethical approval is a prerequisite for the implementation of this research in many countries. Ethical considerations concerning the balance between children’s rights to participate in research, benefits and risks are needed in each research project where children exposed to violence and abuse are involved.
This project is a comprehensive study with the purpose to study the practical application of the Swedish ethics law on children’s participation in research about child abuse and neglect, with a focus on researchers’ and ethical boards argumentation and decision finding and the balance between children’s right to participate and protection from harm. We will address this topic from a legal and a psychological perspective and examine board decisions, applications to the board as well as individual variables which may influence the decision making process.
The study consists of three parts: 1) researchers’ ethical considerations in applications for ethical approval of research about child abuse and neglect. Thematic analysis is used. 2) Legal analysis of decisions from the Ethical Review Authority and the Ethical Review Appeals Board. 3) Direct and indirect empirical investigation of variables involved in the decision process regarding ethical approval.
Final report
Background of the study
In recent years, the interest in including children and adolescents as active participants in research on violence and abuse has increased. This implies ethical responsibilities for the researchers and formal ethical approval is a prerequisite for the implementation of this research in many countries. Ethical considerations concerning the balance between children’s rights to participate in research, benefits and risks are needed in each research project where children exposed to violence and abuse are involved.
Aim and implementation of the study
This project was a comprehensive study with the aim to study the practical application of the Swedish ethics law on children’s participation in research about child abuse and neglect, with a focus on researchers’ and ethical boards’ argumentation and decision finding and the balance between children’s right to participate and protection from harm. We addressed this topic from a legal and a psychological perspective and examined applications to the board, board decisions, as well as individual variables which may influence the decision-making process.
The study consisted of three parts:
1) researchers’ ethical considerations in applications for ethical approval of research about child abuse and neglect.
2) Legal analysis of decisions from the Ethical Review Authority and the Ethical Review Appeals Board.
3) Direct and indirect empirical investigation of variables involved in the decision process regarding ethical approval.
For part 1 and 2 of the study, ethical applications to the national Swedish ethical board during the time period January 1st 2019 and June 30th 2021 were screened in several steps. In order to ensure interrater reliability, at least two of the researchers screened the applications at each step, compared their decisions and came to a common conclusion.
During the above-mentioned time period, in total 9 953 ethical applications had been submitted to ERA. ERA excluded 705 applications for drug/medical trials. In the first screening step, we requested diary numbers and headings of the remaining 9 248 applications and 8 584 applications were excluded as not relevant. Next, the abstracts of 664 applications were screened and of these, 514 were excluded. In the third step, 150 applications were screened in full text and 86 applications were excluded. The final sample consists of 64 applications. These applications were analyzed using qualitative methods.
For part 3 of the study, all members of the ethical boards at the national Swedish Ethical Review Authority were invited to participate in a survey and an experiment in two waves during 2023 and 2024. Out of 723 invited persons, 118 completed the survey and 44 completed the experiment.
Most important results and conclusions
Researchers who submit an ethical application for a study where children participate in research about child abuse and neglect often provide a wide variation of measures taken to minimize risks for the children. This speaks for a high awareness of ethical requirements and great efforts to meet them. Very few applications are finally rejected by the ethical boards, although there are many supplementary decisions in the first step. Clearly, research about child abuse and neglect where children participate is not generally rejected. However, it could be that researchers actively try to avoid projects where the ethical decision might be more uncertain. For example, very few applications specifically focus on research with children under 10 years of age and few applications explicitly refer to participatory research or a child rights perspective (see also the section about future research). Survey and experiment with ethical board members indicate a reflective attitude and awareness of the complexity of research with children about child abuse and neglect. At the same time, this type of research is quite rare and it might be difficult for board members to develop expertise in the field. The possibility to include external experts on trauma and exposed children if this expertise is not available within the board does not seem to be often used. Possibly oral hearings in addition to written ethical applications could help to minimize miscommunication.
Future research
During recent years, the active participation of children and youth in research has attracted increasing attention, debate, and the development of new methods on an international level. This does not only include the participation of young persons as research persons and data providers, which was the focus of our project, but also as advisors, experts and members in reference groups or as co-researchers who influence research questions, data collection and analysis and who even may be co-authors of reports or papers about the research (Grace et al., 2019). This is based on an increasing focus on child rights perspectives. At the same time, ethical laws and ethical considerations with regard to research continue to emphasize children’s and youth’s vulnerability (Ds 2024:21). Continued research about the balance between children’s need for protection and right to participate in research is needed.
Dissemination of the research, contacts and collaboration
Conferences
The project has been presented in several conferences, which led to new contacts and collaborations.
ISPCAN Congress 2024 arranged by International Society for the Prevention of Child Abuse & Neglect, ISPCAN, Uppsala, August 18 – 21, 2024. The symposium “Ethical aspects of children’s and youth’s participation in research about abuse and neglect”, was initiated by Gisela Priebe with five contributions by Gisela Priebe, Else-Marie Augusti, Mikael Hagström, Stephanie Holth, Mia C. Myhre, Henriette Janne Rueness, Sabine Schönfeld, Linnea Wegerstad, Carolina Överlien.
Law, Society and Digital Pasts, Presents and Futures. Arranged by RCSL (The Research Committee on Sociology of Law) Meeting, Lund, 30 August-1 September, 2023. Presentation of Linnea Wegerstad “Ethical review in Sweden concerning children's participation in research about child abuse and neglect”.
Children in a digital world: Opportunities and challenges. Arranged by Nordic Association for Preventing Child Abuse and Neglect, NFBO, Reykjavik, May 21 - 24, 2023. Presentation of Gisela Priebe ”Ethics in research with children exposed to violence – exchange of experiences and reflections”.
ISPCAN Congress 2022 arranged by International Society for the Prevention of Child Abuse & Neglect, ISPCAN, Quebec City (online event), March 28-30, 2022. Presentation of Gisela Priebe, Linnea Wegerstad, Sabine Schönfeld, Mikael Hagström ”Children’s participation in research about violence, abuse and neglect – right to be involved, benefits and risks”.
Contacts and collaborations
A number of contacts and collaborations was initiated during the project and some of them are continuing after the project.
Swedish Ethical Review Authority, EPM: collaboration for data collection in all parts of our project. Also, Karlstads University has a local Research Ethics Committee as well as ethical advisors and during the project we had recurrent contact with them with regard to the ethical applications for our project. Contacts for dissemination of our results are planned.
Doctoral student Mikael Hagström (other funding) who focuses in his thesis on “Ethics in research with refugee children” and partly uses data from our project.
Managing Ethical Studies on Sensitive Issues, the MESSI-study. This study investigated decision making concerning children’s participation in research on sensitive topics in Australia, for example by human research ethics committees. We had contact with Stephanie Taplin, the leader of the research group and were allowed to use an adapted version of their survey.
International and Canadian Child Rights Partnership, Ethics Working Group, https://www.torontomu.ca/international-canadian-child-rights-partnership/ . Gisela Priebe has contact and collaboration since 2022.
Research seminar together with the project “Strain at a gnat and swallow a camel? Ethical review of humanities and social sciences fit for purpose” (Sila mygg och svälja kameler) at the Faculty of Law, Lund University, November 9, 2022.
Contribution to referral response from the Faculty of Law at Lund university with regard to Ds 2024:21 “En ny lag om forskningsetiska krav på och etikprövning av forskning som avser människor”, February 2025.
In recent years, the interest in including children and adolescents as active participants in research on violence and abuse has increased. This implies ethical responsibilities for the researchers and formal ethical approval is a prerequisite for the implementation of this research in many countries. Ethical considerations concerning the balance between children’s rights to participate in research, benefits and risks are needed in each research project where children exposed to violence and abuse are involved.
Aim and implementation of the study
This project was a comprehensive study with the aim to study the practical application of the Swedish ethics law on children’s participation in research about child abuse and neglect, with a focus on researchers’ and ethical boards’ argumentation and decision finding and the balance between children’s right to participate and protection from harm. We addressed this topic from a legal and a psychological perspective and examined applications to the board, board decisions, as well as individual variables which may influence the decision-making process.
The study consisted of three parts:
1) researchers’ ethical considerations in applications for ethical approval of research about child abuse and neglect.
2) Legal analysis of decisions from the Ethical Review Authority and the Ethical Review Appeals Board.
3) Direct and indirect empirical investigation of variables involved in the decision process regarding ethical approval.
For part 1 and 2 of the study, ethical applications to the national Swedish ethical board during the time period January 1st 2019 and June 30th 2021 were screened in several steps. In order to ensure interrater reliability, at least two of the researchers screened the applications at each step, compared their decisions and came to a common conclusion.
During the above-mentioned time period, in total 9 953 ethical applications had been submitted to ERA. ERA excluded 705 applications for drug/medical trials. In the first screening step, we requested diary numbers and headings of the remaining 9 248 applications and 8 584 applications were excluded as not relevant. Next, the abstracts of 664 applications were screened and of these, 514 were excluded. In the third step, 150 applications were screened in full text and 86 applications were excluded. The final sample consists of 64 applications. These applications were analyzed using qualitative methods.
For part 3 of the study, all members of the ethical boards at the national Swedish Ethical Review Authority were invited to participate in a survey and an experiment in two waves during 2023 and 2024. Out of 723 invited persons, 118 completed the survey and 44 completed the experiment.
Most important results and conclusions
Researchers who submit an ethical application for a study where children participate in research about child abuse and neglect often provide a wide variation of measures taken to minimize risks for the children. This speaks for a high awareness of ethical requirements and great efforts to meet them. Very few applications are finally rejected by the ethical boards, although there are many supplementary decisions in the first step. Clearly, research about child abuse and neglect where children participate is not generally rejected. However, it could be that researchers actively try to avoid projects where the ethical decision might be more uncertain. For example, very few applications specifically focus on research with children under 10 years of age and few applications explicitly refer to participatory research or a child rights perspective (see also the section about future research). Survey and experiment with ethical board members indicate a reflective attitude and awareness of the complexity of research with children about child abuse and neglect. At the same time, this type of research is quite rare and it might be difficult for board members to develop expertise in the field. The possibility to include external experts on trauma and exposed children if this expertise is not available within the board does not seem to be often used. Possibly oral hearings in addition to written ethical applications could help to minimize miscommunication.
Future research
During recent years, the active participation of children and youth in research has attracted increasing attention, debate, and the development of new methods on an international level. This does not only include the participation of young persons as research persons and data providers, which was the focus of our project, but also as advisors, experts and members in reference groups or as co-researchers who influence research questions, data collection and analysis and who even may be co-authors of reports or papers about the research (Grace et al., 2019). This is based on an increasing focus on child rights perspectives. At the same time, ethical laws and ethical considerations with regard to research continue to emphasize children’s and youth’s vulnerability (Ds 2024:21). Continued research about the balance between children’s need for protection and right to participate in research is needed.
Dissemination of the research, contacts and collaboration
Conferences
The project has been presented in several conferences, which led to new contacts and collaborations.
ISPCAN Congress 2024 arranged by International Society for the Prevention of Child Abuse & Neglect, ISPCAN, Uppsala, August 18 – 21, 2024. The symposium “Ethical aspects of children’s and youth’s participation in research about abuse and neglect”, was initiated by Gisela Priebe with five contributions by Gisela Priebe, Else-Marie Augusti, Mikael Hagström, Stephanie Holth, Mia C. Myhre, Henriette Janne Rueness, Sabine Schönfeld, Linnea Wegerstad, Carolina Överlien.
Law, Society and Digital Pasts, Presents and Futures. Arranged by RCSL (The Research Committee on Sociology of Law) Meeting, Lund, 30 August-1 September, 2023. Presentation of Linnea Wegerstad “Ethical review in Sweden concerning children's participation in research about child abuse and neglect”.
Children in a digital world: Opportunities and challenges. Arranged by Nordic Association for Preventing Child Abuse and Neglect, NFBO, Reykjavik, May 21 - 24, 2023. Presentation of Gisela Priebe ”Ethics in research with children exposed to violence – exchange of experiences and reflections”.
ISPCAN Congress 2022 arranged by International Society for the Prevention of Child Abuse & Neglect, ISPCAN, Quebec City (online event), March 28-30, 2022. Presentation of Gisela Priebe, Linnea Wegerstad, Sabine Schönfeld, Mikael Hagström ”Children’s participation in research about violence, abuse and neglect – right to be involved, benefits and risks”.
Contacts and collaborations
A number of contacts and collaborations was initiated during the project and some of them are continuing after the project.
Swedish Ethical Review Authority, EPM: collaboration for data collection in all parts of our project. Also, Karlstads University has a local Research Ethics Committee as well as ethical advisors and during the project we had recurrent contact with them with regard to the ethical applications for our project. Contacts for dissemination of our results are planned.
Doctoral student Mikael Hagström (other funding) who focuses in his thesis on “Ethics in research with refugee children” and partly uses data from our project.
Managing Ethical Studies on Sensitive Issues, the MESSI-study. This study investigated decision making concerning children’s participation in research on sensitive topics in Australia, for example by human research ethics committees. We had contact with Stephanie Taplin, the leader of the research group and were allowed to use an adapted version of their survey.
International and Canadian Child Rights Partnership, Ethics Working Group, https://www.torontomu.ca/international-canadian-child-rights-partnership/ . Gisela Priebe has contact and collaboration since 2022.
Research seminar together with the project “Strain at a gnat and swallow a camel? Ethical review of humanities and social sciences fit for purpose” (Sila mygg och svälja kameler) at the Faculty of Law, Lund University, November 9, 2022.
Contribution to referral response from the Faculty of Law at Lund university with regard to Ds 2024:21 “En ny lag om forskningsetiska krav på och etikprövning av forskning som avser människor”, February 2025.