Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, Australia.
Centre for Biomedical Ethics (CBmE), Yong Loo Lin School of Medicine, National University of Singapore, Singapore.
J Adolesc Health. 2024 Sep;75(3):502-507. doi: 10.1016/j.jadohealth.2024.05.013. Epub 2024 Jul 11.
Adolescent participation in health research studies is critical yet complex given the lack of clarity around issues such as consent. This study aimed to understand how those conducting research in Australia navigate research ethics in health research involving adolescents, through qualitative interviews.
Purposive sampling was used to recruit 23 researchers involved in adolescent health research using semi-structured in-depth interviews. Interviews were conducted via Zoom and audio-recorded after obtaining informed consent. Thematic analysis was used to construct themes and data were organised using NVivo.
Two contrasting positions emerged from the data: (1) framing of adolescents as inherently vulnerable, their participation in research understood in terms of risk and protection and (2) adolescent engagement in research is understood in terms of empowerment, emphasising their capacity to make decisions about research participation. We traced these positions through three key themes, particularly in relation to the role of ethics committees: (1) competing positions as a result of inferior or superior knowledge about adolescent lives, (2) competing positions resulting in a risk averse or an empowerment approach, and (3) reflections on processes of obtaining consent which involves gatekeeping and tokenism.
Our study highlights the contentious topic of navigating ethics committee requirements for the needs of adolescents. Majority of participants felt the current research ethics establishment is not favourable for researchers or adolescents themselves. While it is imperative that perceptions of ethics committees also be studied in the future, our study provides preliminary understanding of how experiences and perceptions shape how researchers interact with the research ethics establishment.
青少年参与健康研究至关重要，但由于对同意等问题缺乏明确性，这一过程也非常复杂。本研究旨在通过定性访谈，了解澳大利亚的研究人员如何在涉及青少年的健康研究中解决研究伦理问题。
采用目的性抽样方法，招募了 23 名参与青少年健康研究的研究人员，对他们进行了半结构化深入访谈。访谈通过 Zoom 进行，并在获得知情同意后录制音频。采用主题分析法构建主题，并使用 NVivo 组织数据。
从数据中出现了两种截然不同的立场：（1）将青少年视为天生脆弱的个体，他们参与研究被理解为风险和保护的问题；（2）青少年参与研究被理解为赋权的过程，强调他们有能力对研究参与做出决定。我们通过三个关键主题追踪了这些立场，特别是与伦理委员会的作用有关：（1）由于对青少年生活的了解程度存在优劣之分，导致立场相互竞争；（2）竞争立场导致风险规避或赋权方法；（3）对获得同意的过程进行反思，其中涉及把关和象征性参与。
我们的研究强调了在需要青少年的情况下，驾驭伦理委员会要求的争议性话题。大多数参与者认为当前的研究伦理机构对研究人员或青少年本身都不利。虽然未来也必须研究伦理委员会的看法，但我们的研究初步了解了经验和看法如何影响研究人员与研究伦理机构的互动方式。
