Gillick competence: an inadequate guide to the ethics of involving adolescents in decision-making
Clinical ethics
Avraham Bart, Georgina Antonia Hall, Lynn Gillam
Journal of Medical Ethics, 20 February 2024
Abstract
Developmentally, adolescence sits in transition between childhood and adulthood. Involving adolescents in their medical decision-making prompts important and complex ethical questions. Originating in the UK, the concept of Gillick competence is a dominant framework for navigating adolescent medical decision-making from legal, ethical and clinical perspectives and is commonly treated as comprehensive. In this paper, we argue that its utility is far more limited, and hence over-reliance on Gillick risks undermining rather than promoting ethically appropriate adolescent involvement. We demonstrate that Gillick only provides guidance in the limited range of cases where legal decisional authority needs to be clarified. The range of cases where use of Gillick actually promotes adolescent involvement is narrower still, because several features must be present for Gillick to be enacted. Each of these features can, and do, act as barriers to adolescent involvement. Within these limited situations, we argue that Gillick is not specific or strong enough and is reliant on ethically contestable principles. Moreover, in most situations in adolescent healthcare, Gillick is silent on the ethical questions around involving adolescents. This is because it focuses on decisional authority—having the final say in decision-making—which is one small subset of the many ways adolescents could be involved in decision-making. The implication of our analysis is that use of Gillick competence tends to limit or undermine adolescent involvement opportunities. We propose that those working with adolescents should be judicious in seeking Gillick’s guidance, instead drawing on and developing alternative frameworks that provide a comprehensive model for adolescent involvement.
Category: Young Persons
Evaluating the Decisional Capacity for Informed Consent of Transition age Children to Adolescents in Human Subject Research
Evaluating the Decisional Capacity for Informed Consent of Transition age Children to Adolescents in Human Subject Research
Research Article
Kamran Salayev, Ulviyya Aslanova, Kerim Munir
Journal of Empirical Research on Human Research Ethics, 10 December 2023
Abstract
This study aimed to evaluate children’s capacity for informed consent. We translated into Azerbaijani language and adapted the University of California, San Diego Brief Assessment of Capacity to Consent (UBACC). We enrolled four healthy groups: children aged 11, 12, and 13 years and adults. We provided the participants with information about the simulated research proposal and a related informed consent form. Subsequently, they were administered the UBACC. The mean total UBACC scores were 11.9 (11-year-olds), 12.7 (12-year-olds), 14.0 (13-year-olds), and 16.0 (adults). The gradual increase in the mean UBACC scores with age suggests the continuous maturation of the capacity to comprehend the informed consent process. There was no specific cutoff age to decide whether the children were competent enough to provide informed consent.
Assessment of Consent Comprehension Among Kenyan Adolescents, Young Adults, and Parents: Comparison of Enhanced and Standard Consenting Procedures
Assessment of Consent Comprehension Among Kenyan Adolescents, Young Adults, and Parents: Comparison of Enhanced and Standard Consenting Procedures
Original Article
Winnie Kavulani Luseno, Bonita J. Iritani, Shane Hartman, Fredrick S. Odongo, Florence Anyango Otieno, Barrack Otieno Ongili, Stuart Rennie
Journal of Adolescent Health, March 2024
Abstract
Purpose
Youth aged 15–19 years and parents of minors aged 15–17 years in sub-Saharan Africa are under-represented in empirical consent research. Thus, knowledge is limited concerning the adequacy of consent procedures and need for strategies to improve consent comprehension among these groups. We assessed comprehension following standard consent procedures and evaluated an enhanced procedure among Kenyan youth and parents.
Methods
Participants were adolescents aged 15–17 years (n = 273), their parents (n = 196), and young adults aged 18–19 years (n = 196). We used a quasi-experimental cohort design to implement standard and enhanced (single condition: extended discussion, test/feedback) consent procedures. Participants completed a 21-item informed consent comprehension assessment instrument.
Results
After standard consent procedures, mean comprehension scores were 11.36, 13.64, and 13.43 (score range: 0–21) among adolescents, young adults, and parents, respectively. About 6.2% of adolescents, 19.6% of young adults, and 21.4% of parents answered ≥ 80% of the questions correctly. After the enhanced procedures, comprehension scores (15.87 adolescents, 17.81 young adults, and 16.77 parents) and proportions answering ≥ 80% of the questions correctly (44.9% adolescents, 76.8% young adults, and 64.3% parents) increased significantly. Regression analysis indicated statistically significant differences (p < .001) in comprehension scores between the enhanced and standard groups (β = 3.87 adolescents, β = 4.03 young adults, and β = 3.60 parents) after controlling for sociodemographic factors.
Discussion
Enhancing consent procedures with extended discussions, quizzes, and additional explanation where understanding is inadequate is a promising approach for improving comprehension. However, poorer comprehension among adolescents compared to young adults and parents underscores the need for research to identify additional approaches to improve understanding.
Incorporating parental values in complex paediatric and perinatal decisions
Incorporating parental values in complex paediatric and perinatal decisions
Rosa Geurtzen, Dominic J C Wilkinson
The Lancet – Child & Adolescent Health, 11 January 2024
Summary
Incorporating parental values in complex medical decisions for young children is important but challenging. In this Review, we explore what it means to incorporate parental values in complex paediatric and perinatal decisions. We provide a narrative overview of the paediatric, ethics, and medical decision-making literature, focusing on value-based and ethically complex decisions for children who are too young to express their own preferences. We explain key concepts and definitions, discuss paediatric-specific features, reflect on challenges in learning and expressing values for both parents and health-care providers, and provide recommendations for clinical practice. Decisional values are informed by global and external values and could relate to the child, the parents, and the whole family. These values should inform preferences and assure value-congruent choices. Additionally, parents might hold various meta values on the process of decision making itself. Complex decisions for young children are emotionally taxing, ethically difficult, and often surrounded by uncertainty. These contextual factors make it more likely that values and preferences are initially absent or unstable and need to be constructed or stabilised. Health-care professionals and parents should work together to construct and clarify values and incorporate them into personalised decisions for the child. An open communication style, with unbiased and tailored information in a supportive environment, is helpful. Dedicated training in communication and shared decision making could help to improve the incorporation of parental values in complex decisions for young children.
Adolescent assent in research: a relational ethics approach
Adolescent assent in research: a relational ethics approach
Case Study
Happy Indri Hapsari, Mei-Chih Huang
Indian Journal of Medical Ethics, October-December 2023
Open Access
Abstract
Researchers often neglect adolescents’ willingness to participate in research. The granting of permission by parents is sometimes not in accordance with the unwillingness of adolescents. Relational ethics is the right approach to overcome inconsistencies between legal and ethical agreements in granting parental permission and adolescent’s assent. This is because relational ethics is based on building relationships among many parties. The focus of this case study is to improve understanding of the assent of adolescents through intensive study of research conflict, reinforced using existing research and to understand how relational ethics can be used as an approach in decision making, especially in conflicts between parental permission and assent from adolescents.
Spotlight Articles
This month our spotlight section focuses on the practical development of approaches to obtain assent from persons who may not be able to provide full informed consent. Assent is of particular interest to the GE2P2 Global Foundation and we welcome any thoughts or engagement our readers may want to share.
In the Psychology in the Schools research article Review of participatory research assent procedures in school psychology, Flowers et al. point out that ‘[t]ransparency in research is vital for advancing science and safeguarding research participants’ and provide the following recommendations for practitioners:
- Given the findings that only a small percentage of reviewed articles provided a detailed account of how assent was obtained from children and adolescent participants, it is crucial for practitioners in school psychology research to prioritize and transparently document their assent procedures.
- While the current review did not identify novel methods for obtaining assent in school psychology research, practitioners should consider looking to related fields for potentially innovative approaches. Engaging participants in a way that enhances their understanding and buy‐in can lead to more accurate and valid research outcomes.
- Researchers and practitioners in school psychology should advocate for clear reporting standards regarding assent procedures in publications. Providing detailed information about the assent process should be seen as essential to ethical research, and authors and journal editors should consider the value of including this information in their manuscripts.
In Maureen Dykinga’s University of Arizona PhD Dissertation Promoting Health Literacy by Operationalizing a Developmental Approach to Assent, the author finds that in the University of Arizona context, there is a ‘need for operationalized resources that already contain simplified language for PIs to use when assenting youth’. Dykinga notes this research is important for ‘deepening our understanding of the effect age has on interventions and the course of diseases [as this] is dependent upon youth-specific data’.
Review of participatory research assent procedures in school psychology
Research Article
Jaime Flowers, Daniel McCleary, Jillian Dawes, Hunter Marzolf
Psychology in the Schools, 5 December 2023
Abstract
In the realm of psychology and related fields, like school psychology, obtaining informed consent from clients or participants who are 18 years old or older is mandatory for researchers. However, if the individuals are below 18 years old or under a conservatorship, their assent is crucial even if their parent or legal guardian has provided formal consent. Despite the widespread recognition of the importance of assent during research, there is a lack of research and guidelines on how to obtain it effectively. To bridge this gap, we conducted a review and created a summary of research published in school psychology journals on gaining assent during research studies. The articles were categorized based on the experimental design, population, and level of assent described. Our findings offer a comprehensive overview of the current state of research on gaining assent in school psychology, which will enhance transparency in research methods.
Promoting Health Literacy by Operationalizing a Developmental Approach to Assent
PhD Dissertation
Maureen Dykinga
PhD Thesis, 2023 [University of Arizona]
Open Access
Abstract
Background
Since 1991, The Common Rule has provided regulation to protect humans participating in biomedical or social research. Despite clear protocols to obtain informed consent from adults, there is limited information on how to incorporate developmental factors such as simplified language, formative assessment, and feedback into youth assent practices. Adolescence, an important period for developing behaviors that impact health throughout the lifespan, is also a time when developmental capabilities vary greatly among peers of the same chronological age. Meaningfully engaging youth in research begins with an assent that integrates developmental factors and promotes the health literacy of youth. Operationalizing this approach narrows the gap between regulation and research practices.
Methods
To quantify the language complexity of two assent templates, 3 trained speech-language pathologists used Language Sample Analysis; the results were compared. To assess the usefulness of incorporating development into assent, a developmental approach to assent was designed. This approach was implemented with a randomized sample of 50 youth participating in the Children And Teens Study (CATS). A data capture system was utilized to present simplified assent language in segments and ask 6 questions assessing comprehension. For individuals with incorrect answers, feedback was provided, and the same question was presented a second time. To incorporate youth priorities, values, and strengths into assent resources, demographics, educational experiences, exposure to racism, and resiliency data were analyzed. To evaluate the feasibility of shifting institutional assent practices, semi-structured interviews were conducted, assessing the importance of assent, understanding of a developmental approach, its acceptability, the practicality of requiring it, and the resources needed for Principal Investigators (PIs), to be successful. To design a toolkit of operational resources, the knowledge from implementing a developmental approach, analyzing youth data, and conducting the feasibility study was applied.
Results
The simplified assent conveyed the same number of key study details as the more complex assent. 100% of the 6 questions were answered accurately by participants. The cross-section of the youth represented a diverse mix of demographics with 72% reporting comorbidities that impact language, learning, mental, and chronic health. Ninety-eight percent indicated an awareness of racism while 16% had encountered it directly. Youth valued education/knowledge and prioritized flexibility, agency, and autonomy. They demonstrated strengths such as cooperation, connection, and belonging. PIs indicated that assent was important and incorporating a developmental approach was acceptable. They did not believe it would be practical to require this approach. Key barriers were identified as securing buy-in from researchers, addressing time constraints, and gaining institutional support. Resources that strengthen capacity, provide examples, and allow for flexibility, were identified as a need by researchers. A toolkit of resources that reflected youth awareness, priorities, values, and strengths while meeting researcher requests was developed and made available in the resources section of the University of Arizona (UArizona) Institutional Review Board (IRB) website.
Conclusion
The results suggest that integrating a developmental approach was useful in communicating key study elements and reinforced the necessity for inclusive assent practices that align with youth awareness. Incorporating developmental factors into assent empowers youth to exercise health literacy. Providing operational assent resources that reflect the values of diverse youth communities and strengthen the capacity of PIs is the first of many strategies to meaningfully engage youth in research.
‘But, what is a researcher?’ Developing a novel ethics resource to support informed consent with young children
‘But, what is a researcher?’ Developing a novel ethics resource to support informed consent with young children
Julia Truscott, Laura Benton
Children’s Geographies, 12 December 2023
Abstract
Young children are generally unfamiliar with the notion of research, which can generate ethical discomfort when seeking their consent to participate in it. Taking informed consent with young children as a focus, in this viewpoint article we reflect on what it means for young children (aged approximately 3–8 years) to be ‘informed’ in the context of research participation. We then share the process of developing an interdisciplinary, innovative ethics video resource to enhance children’s understanding of research, the researcher role and children’s participation in research. To ensure the resource was understandable and engaging for young children, we drew on existing research literature and other supplementary resources as well as creative storytelling and consultation with children and parents. The animated video, which is freely available online, builds from young children’s own experiences and questions with the aim of better supporting their understandings and upholding their rights through the informed consent process.
Evaluating the Decisional Capacity for Informed Consent of Transition age Children to Adolescence in Human Subject Research
Evaluating the Decisional Capacity for Informed Consent of Transition age Children to Adolescence in Human Subject Research
Research Article
Kamran Salayev, Ulviyya Aslanova, Kerim Munir
Journal of Empirical Research on Human Research Ethics, 10 December 2023
Abstract
This study aimed to evaluate children’s capacity for informed consent. We translated into Azerbaijani language and adapted the University of California, San Diego Brief Assessment of Capacity to Consent (UBACC). We enrolled four healthy groups: children aged 11, 12, and 13 years and adults. We provided the participants with information about the simulated research proposal and a related informed consent form. Subsequently, they were administered the UBACC. The mean total UBACC scores were 11.9 (11-year-olds), 12.7 (12-year-olds), 14.0 (13-year-olds), and 16.0 (adults). The gradual increase in the mean UBACC scores with age suggests the continuous maturation of the capacity to comprehend the informed consent process. There was no specific cutoff age to decide whether the children were competent enough to provide informed consent.
American LGBTIQ+ youth using waived or parent/guardian informed consent: investigating social support and life satisfaction
American LGBTIQ+ youth using waived or parent/guardian informed consent: investigating social support and life satisfaction
Research Article
Sarah Kiperman, Emily Srisarajivakul, Carrie E. Lorig, Carla Kevern
Journal of LGBT Youth, 4 December 2023
Abstract
Minimal research in the United States has investigated how LGBTIQ+ youth who use waived consent– an ethical research method that facilitates inclusion for minors when informed consent poses a barrier– differ from LGBTIQ+ youth who can acquire consent from their parent(s)/guardian(s). The current study surveyed N = 313 American LGBTIQ+ youth, where n = 173 used waived consent and n = 92 used parent consent to participate. Researchers explored how these youth compared regarding their life satisfaction and support experiences across parents/guardians, teachers, close friends, classmates, and people at school. Differences were also investigated using MANOVAs and t-tests among n = 149 cisgender and n = 164 gender diverse (e.g., transgender, genderqueer, gender-nonconforming) LGBTIQ+ youth. While overall life satisfaction was similar among youth with waived and parent consent as well as among youth identifying as cisgender and gender diverse, youth who used parent consent perceived having greater support from their parents/guardians, people at school, and classmates compared to youth who used waived consent. Gender diverse youth reported significantly lower levels of support from parents, classmates, and people at school compared to their cisgender peers. Implications for research and practice are discussed.
Involvement and Autonomy of Minors in Medical Settings: Perceptions of Children Undergoing Surgery and Parents
Involvement and Autonomy of Minors in Medical Settings: Perceptions of Children Undergoing Surgery and Parents
Francisco J. Rodríguez-Domínguez, Teresa Osuna-García, Alberto Guillén, María D. Pérez-Cárceles, Eduardo Osuna
Children, 24 November 2023; 10(12)
Open Access
Abstract
Informed consent presupposes competence and represents a formal decision by an informed person who has the legal capacity to accept medical action or participate in research. Our aim was to analyze the perceptions of minors and their parents about the age at which they consider that a minor is competent for making health decisions. A descriptive observational study was carried out in 302 minors between 12 and 17 years of age undergoing elective surgery, and 302 parents (range 30 to 62 years). Two semistructured questionnaires were designed, one for the minors and the other, for the parents. A total of 20.1% of minors and 31.1% of parents believe that patients should not make decisions related to their health until they are 18 years old. A total of 74.9% of the minors surveyed consider that from 16 years of age, the minor is empowered to make decisions. In parents, this percentage is 60%. In the pediatric setting, each case and situation must be examined individually to determine if the minor meets the condition of maturity to decide. The ideal is to promote the minor’s participation in decision-making, giving them the opportunity to participate in the process in a manner appropriate to their capacity.
Center for Informed Consent Integrity 