SPOTLIGHT ARTICLES – YOUNG PERSONS

For our Spotlight section this month, we feature our full Young Persons section, recognizing that the articles included are both important and diverse.

We note in particular, two recent review articles discussed further just below, as well as a position statement from the Malaysian Academy of Medicine for obtaining assent for research involving children in that country, with an interesting set of recommendations. These recommendations include enhancing comprehension, by “…customising assent procedures by integrating visual aids, multimedia resources, verbal explanations and open question sessions. Innovative methods, such as combining images with text or utilising multimedia…” to help “ensure the development of its best practice.”

In the Journal of Adolescent Health article Positive Impacts of Adolescent Involvement in Health Research: An Umbrella Review, Warraitch et al. present the positive impact experienced by adolescents when included in research, as well as the resulting increased quality of the research involved. In their Conclusion, the authors argue that “…Moving forward, rigorous evaluation of adolescent involvement and transparent reporting methods are vital to advancing our understanding of the benefits of engaging youth. By recognizing the transformative potential of adolescent engagement, this review calls for proactive efforts from researchers, institutions, and funding agencies to promote and sustain their active involvement in research initiatives.”

In the AJOB Empirical Bioethics article Pediatric Assent in Clinical Practice: A Critical Scoping Review Wasserman et al. lay out the contextual elements unique to pediatric assent, including its long-term development, and how to approach unique ethical elements involved, such as respect, empowerment and rights. The authors underscore three central themes emerging from their analysis:
[1] Valid pediatric assent depends on the context. It varies by treatment and geographic/cultural setting.
[2] Pediatric assent is conceived as a longitudinal process in two distinct ways. One involves mul­tiple iterations of eliciting the preferences of pediatric patients within the context of a treat­ment decision or episode of care; the other involves attending to children’s developmental maturity over time.
[3] The ethical justifications for pediatric assent are underspecified. Authors often invoked ambigu­ous notions like “respect” or drew heavily on the concept of autonomy, despite its question­able relevance in many pediatrics cases.

Positive Impacts of Adolescent Involvement in Health Research: An Umbrella Review
Azza Warraitch, Ciara Wackera, Sanjana Biju, Maria Leea, Delali Bruce, Paul Curran, Qusai Khraisha, Kristin Hadfield
Journal of Adolescent Health, August 2024
Open access
Abstract
Despite an increased recognition of the right of adolescents to be involved in decisions that affect them, young people continue to be under-involved in health research. One of the reasons is a lack of awareness among researchers on the current evidence base around the benefits of involving adolescents. To address this, we conducted an umbrella review to synthesize the evidence on the positive impacts of adolescent involvement in health research. This umbrella review was preregistered with PROSPERO (CRD42021287467). We searched 11 databases, Google Scholar, PROSPERO, reference lists, 10 journals, websites of 472 organizations, and sought input from experts. Ultimately, we included 99 review articles. We found that adolescent involvement has many positive impacts on young people, including increased knowledge and skills; personal development; financial benefits; career and academic growth; enhanced relationships; and valuing their experience. The positive impacts of adolescent involvement on the research itself include increased relevance of the study to adolescents, improved recruitment, development of more adolescent-friendly materials, enhanced data collection and analysis, and more effective dissemination. Researchers also benefited from adolescents’ involvement through increased knowledge, skills, and a shift in their attitudes. The evidence supporting the positive impacts of adolescent involvement in research is substantial but limited by a lack of rigorous evaluation, inconsistent reporting, and unclear evaluation methods.

Pediatric Assent in Clinical Practice: A Critical Scoping Review
Research Article
Jason Adam Wasserman, Amelia N. Najor, Natalie Liogas, Stephanie M. Swanberg, Abram Brummett,, Naomi T. Laventhal, Mark Christopher Navin
AJOB Empirical Bioethics, 21 August 2024
Abstract
Background
This study assesses how pediatric assent is conceptualized and justified within the therapeutic context. Pediatric ethicists generally agree that children should participate in medical care decisions in developmentally appropriate ways. Much attention has been paid to pediatric assent for research participation, but ambiguities persist in how assent is conceptualized and operationalized in the therapeutic context where countervailing considerations such as the child’s best interest and parental permission must also be weighed.
Methods
Searches were conducted in 11 databases including PubMed, Embase, Cochrane Library, and Web of Science. Articles published between 2010 and 2020 were screened in COVIDENCE for meeting each of four criteria: (1) focusing on pediatric assent, (2) focusing on clinical care, (3) including normative claims, and (4) containing substantive statements about the meaning of pediatric assent. Full texts were abstracted for (1) operational definitions of assent, (2) discussion of the temporal nature of assent, (3) description of the concept of “understanding,” and (4) ethical justifications for soliciting assent. These excerpts were coded and code patterns formed themes presented in the results.
Results
The final analytic data set contained 29 articles. Analysis yielded three key themes. First, valid assent varies by treatment, population (e.g., younger versus older), and geographic/cultural context. Second, assent represents two distinct longitudinal processes: One involves eliciting preferences over a disease course or care episode; the other focuses on children’s developmental maturation. Third, ethical justifications for assent draw variously on instrumental and intrinsic reasons, but often remain ambiguous.
Conclusions
There is widespread agreement that assent is morally valuable, but there remain substantial ambiguities or disagreements about its meaning, process, and ethical justification.

Obtaining assent for research involving children in Malaysia: a position statement from the Academy of Medicine of Malaysia College of Paediatrics
E J Khoo, B A Zilfalil, M K Thong, S C Yong, S C Chee, J K Lee, S H Teh, F Taib, F C Cheah
Medical Journal of Malaysia, July 2024; 79(4) pp 494-497
Abstract
The Academy of Medicine of Malaysia College of Paediatrics acknowledges the role of children in research and this position statement explores the ethical considerations in obtaining assent from minors in the Malaysian context. It highlights the importance in respecting children’s agency and navigating cultural complexities. The College proposes flexibility in the minimum age for assent of at least nine years old, while emphasising the need for a tailored assent procedure. Addressing language and cultural diversities and expanding local empirical research on a formal assent process are some building blocks in developing a standardised nationwide process in obtaining assent from children.

Recommendations
Considering the challenges associated with obtaining ethical and effective assent for research involving children in Malaysia, the College proposes several recommendations to address these issues towards best practice.

1. Recognising the importance of respecting children as individuals with their own rights, the College suggests a flexible approach to the minimum age for assent. Specifically, the College recommends raising the minimum age to at least nine years old, guided by current available evidence. Additionally, this flexibility should be applied with consideration for the complexity of the research, ensuring that the assent process is age appropriate. Such an approach not only acknowledges the child’s agency but also aids in the development of decision-making skills crucial for adulthood, contributing to the cultivation of trust in an era of evolving healthcare systems.
2. The College emphasises the need for tailored assent procedures that account for varying educational levels among children. To enhance comprehension, the College suggests customising assent procedures by integrating visual aids, multimedia resources, verbal explanations and open question sessions. Innovative methods, such as combining images with text or utilising multimedia, can further ensure the development of its best practice.
3. The College calls attention to the dynamic nature of the assent process, emphasising that obtaining assent is a dialogue. While the College advocate for researchers documenting a child’s assent for accountability, the process is not a one-time signature on a form, that could all the more so place a burden on the child to engage in a significant act they might not fully comprehend. Recognising assent as an ongoing and dynamic process, continuous evaluation is desirable.
4. The College addresses the diverse linguistic landscape of Malaysia by recommending proactive language accessibility. This includes addressing translation needs to ensure inclusivity. Furthermore, the College advises granting sufficient time and privacy for consultations with parents, guardians and children. Additionally, extending this process to include discussions with extended family members or community members, as applicable, is deemed crucial. Cultural nuances that may influence the assent process should be acknowledged and navigated accordingly.
5. Given the absence of data on the appropriate age for obtaining assent in Malaysia, the College recommends and supports the conduct of local empirical research in this area. This research aims to better understand the cultural contexts within Malaysia and subsequently formulates the basis for developing assent practices nationwide. Such an approach stresses the importance of tailoring assent procedures to the unique cultural diversity present in Malaysia.

Conclusion
Addressing the challenges of obtaining assent from minors in Malaysia requires a multifaceted approach. This position statement by the College not only delineates its challenges but also outlines a path forward, emphasising the importance of respecting children’s developing capacity and ensuring effective communication, while navigating Malaysia’s socio-cultural landscape. Establishing local policies and guidelines must be dynamic and responsive to evolving research and societal norms. Advocating for best practices at a local level will deepen understanding and inform the formulation of standardised nationwide assent practices.

Consent for anaesthesia: considerations in children and young people
Niall Tierney, Caoimhe Casby, Barry Lyons
Anaesthesia & Intensive Care Medicine, 9 August 2024
Abstract
The law relating to consent for medical interventions in children is complex. Children, when they are old or mature enough can consent for themselves, but the legal rules around this vary by jurisdiction. When they are unable to consent, this must be sought from someone with parental responsibility. This article discusses consent, and its refusal, to medical interventions by children, adolescents and parents.

Ethical guidelines for human research on children and adolescents: A narrative review study
Review Article
Gholamreza Askari, Mahdi Vajdi, Saeede Jafari-Nasab, Sahar Golpour-Hamedani
Journal of Research in Medical Sciences, August 2024
Abstract
The implementation of human research involving children and adolescents necessitates a nuanced understanding of the distinct ethical complexities and sensitivities that arise. This study aimed to conduct a comprehensive review of ethical guidelines for research with these populations by extensively examining existing standards and applied studies. The review revealed a myriad of challenges inherent in the involvement of children and adolescents as research subjects. The most important ethical challenges relate to the principles of bioethics and their compliance with human studies involving children/adolescents, informed consent, and risk assessment in studies on children/adolescents. To facilitate appropriate participation of youth in research endeavors, meticulous planning is required, in conjunction with a re-examination of the definitions of ethical principles in pediatric research, close monitoring of potential risks and benefits, and the utilization of a combination of innovative and traditional approaches to obtain informed consent that adheres to ethical standards. Performing research with children and adolescents requires special considerations to address the unique ethical issues that can emerge. By adhering to ethical guidelines tailored specifically to these vulnerable populations, researchers can help ensure that studies are conducted in an appropriate and responsible manner.

Understanding the process of adolescent assent for voluntary male medical circumcision in Zimbabwe: findings from a cross-sectional study
Research
Rebecca L. West, Sunny Sharma, Nisa Hurst, Will Bench, Nehemiah Nhando, Brian Maponga, Lucy Bullock, Darius Egualeonan, Jemma Reast, Sinokuthemba Xaba, Karin Hatzold & Sehlulekile Gumede-Moyo
Discover Public Health, 30 July 2024
Open Access
Abstract
Background
Voluntary medical male circumcision (VMMC) is a method for combination HIV prevention for adolescents > 15 years in settings with generalized epidemics. In Zimbabwe, policy currently allows VMMC in adolescents > 15 years old, but there is consideration to lower the threshold to 13 years old. There is a need to understand current practices in assent/consent, and parents’ requirements for assent/consent to inform policy recommendations for the VMMC programme in lowering its age threshold.
Methods
Cross-sectional surveys were conducted in September 2022 using convenience sampling among three respondent groups: uncircumcised adolescents/young men (AYM) aged 13–16 years (n = 881), circumcised AYM aged 13–20 years (n = 247), and parents of uncircumcised adolescents aged 13–16 years (n = 443). Surveys asked about VMMC knowledge, experiences with mobilisers, circumcised AYM’s assent/consent experiences, and parents’ preferences for assent/consent processes.
Results
Knowledge of VMMC was significantly lower among younger adolescents aged 13–14 than their 15–16 year-old peers. 57% (142/247) of circumcised AYM had a one-to-one discussion with their provider before having the procedure, 32% (80/247) said they were not fully informed about VMMC prior to the procedure, and 54% (134/247) wanted more information about procedure-related pain. Over half (56%, 42/75) of circumcised AYM whose parents had not provided consent in-person for them to receive the procedure reported that their parents had never been contacted to verify consent.
Conclusions
There are gaps in the current assent/consent process for VMMC in Zimbabwe. Providers should be trained to give balanced information on risks and benefits of the procedure, including potential for pain. One-on-one discussions between providers and adolescents prior to the procedure, age-appropriate counselling, and tools for providers to ascertain adolescents’ understanding and ability to provide assent are essential processes, especially if the age threshold is lowered to include younger adolescents. it is also imperative to improve communication with parents, particularly to verify consent for their children has been given, per national guidelines.

Obtaining Consent for Research on Risky Behaviours Among Adolescents in Canada: A Scoping Review
Review Article
Lillian MacNeill, A. Luke MacNeill, Shelley Doucet, Alison Luke, Alex Goudreau
Journal of Empirical Research on Human Research Ethics, 15 May 2024
Open Access
Abstract
This scoping review explores current practices for obtaining consent in research on risky behaviours among adolescents in Canada. The JBI methodology for scoping reviews was used. The database search was conducted in August 2021 and updated in November 2022. Papers published in 2010 or later were included. Extracted data included study characteristics, sample characteristics, and consent procedures. The review included 83 reports covering 57 studies. Nearly 60% of studies relied on adolescent self-consent for participation. Adolescent self-consent was more common than parental/guardian consent for studies using in-person research methods, older adolescent groups, and particularly vulnerable populations. Parental/guardian consent was more common for studies using younger age groups and general population samples. Adolescent self-consent was more common than parental/guardian consent for most risky behaviours covered by this review. These results provide insight into current consent practices in this area and offer guidance to researchers and institutional review boards in Canada.