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Toward best ethical practices for including children in childhood cancer research
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0002-7262-3464
2026 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis is based on an empirical-ethical approach with the overall aim to explore and describe ethical aspects of including assent-aged children in childhood cancer research, and to develop empirically informed, ethically grounded guidance for research practice.

Study I was a qualitative interview study with healthcare professionals in Swedish pediatric oncology. The aim was to investigate their perspectives on ethical values, challenges, and opportunities to strengthen ethical aspects in recruitment of children with cancer to research, and their perspectives on ethical competence. Manifest inductive qualitative content analysis generated five categories: establishing relationships and trust, meeting informational needs, acknowledging vulnerability, balancing roles and interests, and ensuring ethical competence.

Study II was a qualitative interview study with members of the Swedish Ethical Review Authority. The aim was to explore their perspectives on ethical values, challenges, and opportunities to strengthen ethical aspects of participant recruitment in pediatric research, and their perspectives on ethical competence. Manifest inductive reflexive thematic analysis generated three themes: promoting participation, protecting children, and regulatory adherence.

Study III was a qualitative interview study with children, siblings, and parents who had participated in childhood cancer research. The aim was to describe how they experience children’s participation in assent. Latent inductive reflexive thematic analysis generated two themes: a moral and emotional commitment to research, and relational assent: trust, loyalty, andparental constraint.

Study IV was a prescriptive normative study aimed at developing ethically grounded guidance for children’s participation in assent. Using reflective equilibrium, a normative analysis was conducted based on empirical findings from Studies I–III, previous research, moral judgments, ethical principles, and relevant guidelines. The study proposed that childhood cancer research should not only respect children’s autonomy but also actively promote it, acknowledging that relationships and trust can both enable and constrain autonomy.

This thesis contributes to a context-specific understanding of ethical aspects in childhood cancer research, particularly concerning autonomy and vulnerability. It highlights the need to actively support children’s autonomy and participation in assent and the importance of ethical competence in navigating ethical, relational, and clinical complexities in research recruitment. Further, it provides empirically informed normative guidance for research practice.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2026. , p. 79
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 2222
Keywords [en]
assent, children, pediatric research ethics, pediatric oncology, research recruitment, relational autonomy, vulnerability, ethical competence
National Category
Medical and Health Sciences
Research subject
Medical Science
Identifiers
URN: urn:nbn:se:uu:diva-572711ISBN: 978-91-513-2701-3 (print)OAI: oai:DiVA.org:uu-572711DiVA, id: diva2:2019792
Public defence
2026-02-06, Sal IV, Universitetshuset, Biskopsgatan 3, Uppsala, 13:00 (Swedish)
Opponent
Supervisors
Funder
Swedish Childhood Cancer Foundation, [PR2019-0107; KP2022-0011]
Note

Zoom-link: https://uu-se.zoom.us/j/63452852810

Available from: 2026-01-15 Created: 2025-12-08 Last updated: 2026-01-20
List of papers
1. Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.
Open this publication in new window or tab >>Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.
2023 (English)In: BMC Medical Ethics, E-ISSN 1472-6939, Vol. 24, no 1, p. 23-, article id 23Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research.

METHODS: An explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis.

RESULTS: The respondents' ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted.

CONCLUSION: This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2023
Keywords
Assent, Ethical challenges, Ethics, Healthcare professionals, Informed consent, Paediatric oncology, Qualitative research, Research recruitment, Shared decision-making
National Category
Nursing Medical Ethics Ethics
Research subject
Ethics; Pediatrics
Identifiers
urn:nbn:se:uu:diva-500405 (URN)10.1186/s12910-023-00901-4 (DOI)000949309100001 ()36918868 (PubMedID)2-s2.0-85150245004 (Scopus ID)
Funder
Swedish Childhood Cancer Foundation, PR2019-0107
Available from: 2023-04-17 Created: 2023-04-17 Last updated: 2025-12-08Bibliographically approved
2. Research ethics committee members’ perspectives on paediatric research: a qualitative interview study
Open this publication in new window or tab >>Research ethics committee members’ perspectives on paediatric research: a qualitative interview study
2023 (English)In: Research Ethics, ISSN 1747-0161, E-ISSN 2047-6094, Vol. 19, no 4, p. 494-518Article in journal (Refereed) Published
Abstract [en]

Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. REC members supported a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs.

Place, publisher, year, edition, pages
Sage Publications, 2023
Keywords
paediatric research, research ethics, human research ethics committee, ethical review board, recruitment, informed consent, assent, qualitative research
National Category
Medical Ethics
Research subject
Ethics; Medical Science; Pediatrics
Identifiers
urn:nbn:se:uu:diva-504898 (URN)10.1177/17470161231179663 (DOI)001003835000001 ()2-s2.0-85162648546 (Scopus ID)
Funder
Swedish Childhood Cancer Foundation, PR2019-0107
Available from: 2023-06-16 Created: 2023-06-16 Last updated: 2025-12-08Bibliographically approved
3. Children’s participation in assent to paediatric oncology research: experiences of children, siblings and parents
Open this publication in new window or tab >>Children’s participation in assent to paediatric oncology research: experiences of children, siblings and parents
Show others...
(English)Manuscript (preprint) (Other academic)
National Category
Medical Ethics
Identifiers
urn:nbn:se:uu:diva-572709 (URN)
Funder
Swedish Childhood Cancer Foundation, [TJ2015-0005, PR2016-013, PR2019-0107, KP2022-0011]
Available from: 2025-12-05 Created: 2025-12-05 Last updated: 2025-12-08
4. Why children’s research assent matters: Exploring three dimensions of autonomy
Open this publication in new window or tab >>Why children’s research assent matters: Exploring three dimensions of autonomy
Show others...
(English)Manuscript (preprint) (Other academic)
National Category
Medical Ethics
Identifiers
urn:nbn:se:uu:diva-572707 (URN)
Funder
Swedish Childhood Cancer Foundation, [PR2019-0107; KP2022-0011]
Available from: 2025-12-05 Created: 2025-12-05 Last updated: 2025-12-08

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