Research Ethics of Involving Adolescents in Health Research Studies: Perspectives From Australia
Original Article
Neha Faruqui, Angus Dawson, Katharine Steinbeck, Elizabeth Fine, Julie Mooney-Somers
Journal of Adolescent Health, 11 July 2024
Open Access
Abstract
Purpose
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.
Methods
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.
Results
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.
Discussion
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.

Informed Consent and Adolescents with Cancer: Challenges and Tools in Online Studies
Research Article
Maria Carolina Neves, Sara Monteiro, Judith B. Prins, Célia
Journal of Adolescent and Young Adult Oncology, 3 July 2024
Introduction
   Adolescents and young adults (AYAs) with cancer are defined as those diagnosed between 15 and 39 years. Estimates suggest 1,335,100 new AYAs were diagnosed in 2019, but this population is still underrepresented in research. Some challenges to investigating this population are the differences in cancer types between younger and older AYAs; they are difficult to track and easily lost at follow-up; and they are difficult to find at the hospital since they are divided between the pediatric and adult clinics. This article will focus on adolescents 15–17 years old since these are the ones who might need parental consent to participate in research.

Online research has increased in popularity in the last decades, and in 2017, it was the primary way of collecting quantitative data worldwide. Recruiting minors through online methods was shown to be more efficient and cost-effective than offline methods while still allowing researchers to have representative sample. Research shows that adolescents use the internet frequently, making it a good place when investigating adolescents. Regarding cancer research, some studies have used online methods to recruit adolescents. However, there are additional challenges when using online methods with adolescents compared with offline methods. One of them is obtaining parental consent.

This article describes the challenges and alternatives to obtaining informed consent in online quantitative studies of adolescents with cancer and good practices. This may provide tools for researchers to define how they will obtain informed consent in online studies of adolescents with cancer and help lower barriers in research, encouraging more quantitative studies with this population.

From vulnerable subjects to research partners: a critical policy analysis of biomedical research ethics guidelines and regulations
Research Article
Maria Cristina Murano
Research Ethics, 29 March 2024
Open Access
Abstract
Over the last three quarters of a century, international guidelines and regulations have undergone significant changes in how children are problematised as participants in biomedical research. While early guidelines enacted children as vulnerable subjects with diminished autonomy and in need of special protection, beginning in the early 2000s, international regulatory frameworks defined the paediatric population as vulnerable due to unaddressed public health needs. More recently, ethical recommendations have promoted the active engagement of minors as research partners. In this paper, I adopt a post-structuralist approach to policy analysis to examine deep-seated assumptions and presuppositions underlying the changes in the problematisation of children as biomedical research participants over time. While biomedical research ethics focuses on the autonomy and vulnerability of minors, ethical guidelines are situated in specific sociocultural contexts, shaped, among other things, by contingent public health needs and changing conceptions of the value of research and science for society. In the process, I demonstrate the challenge of moving away from an approach that in taking adults as the model overshadows the complexity of children’s lived experiences as well as their personal, cultural, and social lives. The lack of acknowledgement of this complexity makes children vulnerable to epistemic injustice, which is particularly crucial to address in public involvement initiatives.

Research Article

Maria Cristina Murano

Research Ethics, 29 March 2024

Open Access

Abstract

Over the last three quarters of a century, international guidelines and regulations have undergone significant changes in how children are problematised as participants in biomedical research. While early guidelines enacted children as vulnerable subjects with diminished autonomy and in need of special protection, beginning in the early 2000s, international regulatory frameworks defined the paediatric population as vulnerable due to unaddressed public health needs. More recently, ethical recommendations have promoted the active engagement of minors as research partners. In this paper, I adopt a post-structuralist approach to policy analysis to examine deep-seated assumptions and presuppositions underlying the changes in the problematisation of children as biomedical research participants over time. While biomedical research ethics focuses on the autonomy and vulnerability of minors, ethical guidelines are situated in specific sociocultural contexts, shaped, among other things, by contingent public health needs and changing conceptions of the value of research and science for society. In the process, I demonstrate the challenge of moving away from an approach that in taking adults as the model overshadows the complexity of children’s lived experiences as well as their personal, cultural, and social lives. The lack of acknowledgement of this complexity makes children vulnerable to epistemic injustice, which is particularly crucial to address in public involvement initiatives.

Child rights in trans healthcare – a call to action
Editorial
Cal Horton, Ruth Pearce, Jaimie Veale, T. C. Oakes-Monger, Ken C. Pang, Annie Pullen Sansfaçon, Sophie Quinney
International Journal of Transgender Health, 12 June 2024
Introduction
Trans healthcare has seen some positive changes over the past two decades, moving from the pathologisation of difference as ‘disorder’, to approaches that recognize and embrace the diversity, dignity and value of trans lives. In a short time, we have also seen a shift from widespread clinical control and gate-keeping to the growing adoption of affirmative approaches to trans healthcare, which are predicated on respecting trans and gender-diverse peoples’ rights to safe and respectful healthcare. Whilst these evolutions are welcome and important, progress is inconsistent and uneven, and subject to legislative and political rollback. Progress is particularly patchy and fragile in healthcare services for trans, gender-diverse, and gender non-conforming children, with children defined here as encompassing all non-adults under the ages of 18 (United Nations, Citation1989). In multiple countries affirmative healthcare is under attack, with children’s trans healthcare services bearing the brunt of attacks on rights-based practice. There are many locations where trans healthcare services for children fail to uphold trans children’s rights, with approaches in children’s services not keeping up with the improvements that are more widely being seen in adult trans healthcare…

Lowering the Age of Consent for Vaccination to Promote Pediatric Vaccination: It’s Worth a Shot
Margaret Irwin, Derek R. Soled, Christy L. Cummings
Journal of Law, Medicine & Ethics, 31 May 2024
Abstract
This paper challenges historically preconceived notions surrounding a minor’s ability to make medical decisions, arguing that federal health law should be reformed to allow minors with capacity as young as age 12 to consent to their own Centers for Diseases Control and Prevention (CDC)-approved COVID-19 vaccinations. This proposal aligns with and expands upon current exceptions to limitations on adolescent decision-making. This analysis reviews the historic and current anti-vaccination sentiment, examines legal precedence and rationale, outlines supporting ethical arguments regarding adolescent decision-making, and offers rebuttals to anticipated ethical counterarguments.

Consent
Book Chapter
Prince Raj, Abeer Farhan, Martin T. Corbally
Essential Paediatric Surgery, 2024 [Taylor & Francis]
Abstract
Children have the right to be informed and advised of planned interventions. If the child can be regarded as a moral agent and has the mental capacity to understand their condition and proposed treatment, then they should also be part of the consent process. This may have limited applicability in some jurisdictions, but the surgeon must still be aware of the issues in this age group.