Legislation banning gender-affirming medical care (GAMC) for minors is inconsistent with the Consensus Recommendations for Pediatric Decision-Making (Salter et al. 2023). Gender dysphoria is a medical condition, and GAMC promotes adolescents’ health interests. The evidence for GAMC is comparable to the evidence for other types of pediatric medical care. Parents are permitted to consent for similar risks in the treatment of other conditions. Evaluation of the potential benefits, risks, and treatment alternatives is contingent on individual patients’ clinical (...) conditions and adolescents’ and their parents’ values and preferences. Such decisions are within the scope of parental discretion and should be made through shared decision-making with health-care providers. Parents’ declining GAMC does not inherently create a significant risk of serious imminent harm required to justify state intervention. Usurping parental discretion for GAMC is unjust: it treats this medical care differently than other comparable types of medical care without sufficient justification. (shrink)

Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 (...) sites in Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Results: Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). Conclusions: AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials. (shrink)

Shared decision-making is a well-recognized model to guide decision-making in medical care. However, the shared decision-making concept can become exceedingly complex in adolescent patients with varying degrees of autonomy who have most of their medical decisions made by their parents or legal guardians. The complexity increases further in ethically difficult situations such as terminal illness. In contrast to the typical patient-physician dyad, shared decision-making in adolescents requires a decision-making triad (...) that also includes the parents or guardians. The multifactorial nature of these cases can overwhelm treatment teams, with minimal guidance on how to best approach the patient–parents–physician dynamic in an ethically appropriate manner. Estimated time left to live is the paramount ethical consideration for such cases with respect to shared decision-making. This paper offers a sliding scale to serve as a grounding reference for clinicians who care for terminally ill adolescents and hospital ethics committee members for initiating and guiding the ethical discussion for these patients. This paper also elucidates several other ethically salient features inherent to many of these cases, including quality of life, treatability of disease, cultural influences, among others. Yet how each of these variables is weighed is dependent upon the specific circumstances of each individual case. Ultimately, shared decision-making in adolescent patients with terminal illnesses must be a collaborative and ongoing process that thoughtfully weighs the values and ethical responsibilities of the patient, parents, and physician to ideally reconcile differences and come to a consensus on the best management option for each individual patient. (shrink)

As more young people feel safe to outwardly identify as transgender or gender expansive (TGE), meaning that their gender identity does not align with the sex they were assigned at birth, an increasing number of youth who identify as TGE seek gender-affirming medical care (GAMC). GAMC raises a number of ethical questions, such as the capacity of a minor to assent or consent, the role of parents or legal guardians in decisions about treatment, and implications for equitable access to care (...) when differing parental or custodial viewpoints are present. These questions are further complicated by the difficulties in explaining the limits of long-term research in GAMC, with regard to the preservation of fertility, for example. We present two de-identified composite case studies to highlight dilemmas that may arise and offer recommendations to better support patient- and family-centered decision making for GAMC. These include employing a multidisciplinUniverary shared decision-making approach, disentangling informed consent and assent from chronological age, developing a consistent approach to the assessment of decisional capacity, and developing age-appropriate informational materials. (shrink)

Adolescents present a puzzle. There are foundational unclarities about how they should be regarded as decision-makers. Although superficially adolescents may appear to have mature decisional capacity, their decision-making is in many ways unlike that of adults. Despite this seemingly obvious fact, a concern for the claims of autonomy has led to the development of the legal doctrine of the mature minor. This legal construct considers adolescents, as far as possible, as equivalent to adults for (...) the purpose of medical decision-making. The movement to support independent decision-making by adolescents through providing information to them and securing their consent apart from their parents is encouraged by those legal understandings that hold that unemancipated minors should generally be considered as possessing effective decisional capacity. Such legal structures, however, do not adequately take account of the wide variations in adolescent capacities, the immaturity of most adolescent decision-makers, or the important contributions made by parents to the development of their adolescents through parental partnering in the adolescent’s decision-making. The data available indicate that in general adolescents should be regarded as apprentice decision-makers who should make decisions in collaboration with their parents until at least the age of 18. Steps should not be taken pre-emptively to isolate adolescents from the guidance of their parents. As a general rule, what Piker has referred to as “collaborative paternalism” appears most likely both to protect adolescents from their own untoward choices, while also very importantly helping them with parental guidance to develop into mature decision-makers with the capacity to make medical choices on their own. (shrink)

The world literature shows that empirical research regarding the process of decision-making when cancer in adolescents is no longer curable has been conducted in High-income, English speaking countries. The objective of the current study was to explore in-depth and to explain the decision-making process from the perspective of Mexican oncologists, parents, and affected adolescents and to identify the ethical principles that guide such decision-making. Purposive, qualitative design based on individual, fact-to-face, semi-structured, in-depth (...) interviews. The participants were thirteen paediatric oncologists, 13 parents or primary carers, and six adolescents with incurable cancer. The participants were recruited from the paediatric oncology services of three national tertiary-care medical centres in Mexico City. The oncologists stated that they broach the subject of palliative management when they have determined that curative treatment has failed. Respect for autonomy was understood as the assent of the parent/adolescent to what the oncologist determined to be in the best interest of the adolescent. The oncologists thought that the adolescent should be involved in the decision-making. They also identified the ability to count on a palliative care clinic or service as an urgent need. For the parents, it was essential that the oncologist be truly interested in their adolescent child. The parents did not consider it necessary to inform the child about impending death. The adolescents stated that the honesty of their oncologists was important; however, several of them opted for a passive role in the decision-making process. The findings of this study evidence that to achieve good medical practice in low-middle income countries, like Mexico, it is urgent to begin effective implementation of palliative care, together with appropriate training and continuing education in the ethics of clinical practice. (shrink)

Background The world literature shows that empirical research regarding the process of decision-making when cancer in adolescents is no longer curable has been conducted in High-income, English speaking countries. The objective of the current study was to explore in-depth and to explain the decision-making process from the perspective of Mexican oncologists, parents, and affected adolescents and to identify the ethical principles that guide such decision-making. Methods Purposive, qualitative design based on individual, fact-to-face, (...) semi-structured, in-depth interviews. The participants were thirteen paediatric oncologists, 13 parents or primary carers, and six adolescents with incurable cancer. The participants were recruited from the paediatric oncology services of three national tertiary-care medical centres in Mexico City. Results The oncologists stated that they broach the subject of palliative management when they have determined that curative treatment has failed. Respect for autonomy was understood as the assent of the parent/adolescent to what the oncologist determined to be in the best interest of the adolescent. The oncologists thought that the adolescent should be involved in the decision-making. They also identified the ability to count on a palliative care clinic or service as an urgent need. For the parents, it was essential that the oncologist be truly interested in their adolescent child. The parents did not consider it necessary to inform the child about impending death. The adolescents stated that the honesty of their oncologists was important; however, several of them opted for a passive role in the decision-making process. Conclusion The findings of this study evidence that to achieve good medical practice in low-middle income countries, like Mexico, it is urgent to begin effective implementation of palliative care, together with appropriate training and continuing education in the ethics of clinical practice. (shrink)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies (...) on end-of-life decision making in pediatrics, to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the ‘AP‐physician‐family‐relationship’ and the dominant role Chinese families play in medical decision‐making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese (...) writers from Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives ‘weak’ family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re‐interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its ‘parens patriae’ power to defend the defenseless in society and the integrity of the medical profession. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the 'AP-physician-family-relationship' and the dominant role Chinese families play in medical decision-making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese (...) writers from Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives 'weak' family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re-interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its 'parens patriae' power to defend the defenseless in society and the integrity of the medical profession. (shrink)

Adults who give proxy consent for medical treatment for adolescents must decide how much weight to give to adolescents' own preferences. There is evidence that some adolescents choose treatments different from what adults see as most reasonable. It is argued that adolescents choose according to age-specific values, i.e. values they hold, as adolescents, and which fulfil important developmental needs. Because not fulfilling these needs may do serious psychological damage, it is urged that proxies give weight (...) to these values, up to the limit where it would endanger or profoundly limit future life. (shrink)

Adolescence is a period of life during which peers play a pivotal role in decision-making. The narrative of social influence during adolescence often revolves around risky and maladaptive decisions, like driving under the influence, and using illegal substances. However, research has also shown that social influence can lead to increased prosocial behaviors and a reduction in risk-taking. While many studies support the notion that adolescents are more sensitive to peer influence than children or adults, the developmental processes (...) that underlie this sensitivity remain poorly understood. We argue that one important reason for this lack of understanding is the absence of precisely formulated models. To make a first step toward formal models of social influence during adolescence, we first identify three prominent verbal models of social influence in the literature: social motivation, reward sensitivity, and distraction. We then illustrate how these can be translated into formal models, and how such formal models can inform experimental design and help identify developmental processes. Finally, by applying our formal models to existing datasets, we demonstrate the usefulness of formalization by synthesizing different studies with seemingly disparate results. We conclude with a discussion on how formal modeling can be utilized to better investigate the development of peer influence in adolescence. (shrink)

Reports of children participating in hunger strikes while detained in offshore detention centres raise interrelated ethical issues and recognizable challenges for the medical decision-makers at these sites. A composite case study, informed by reports in the public domain, is employed to explore the unique challenges of consent and decision-making in these circumstances and the perennial issues inherent in adolescents’ developing capacity and autonomy. We present an amalgamated case of a fourteen-year-old adolescent who refused to consent to (...) medical reversal of her hunger strike protest. The medical team became the final arbiter when her parents, who were also in detention, could not agree with each other even after mediation. The case explores the complexity of evaluating the adolescent’s capacity to provide informed consent while influenced by the opinions of co-detainees in this extreme setting. We argue that the parents and the child had compromised decisional capacity due to the effects of detention. The challenges to the medical team are recognized and discussed. The team members faced a difficult dilemma and considered the competing values of the multiple cultural and ethical factors. Each team member integrated his or her own roles, duties, and discipline-specific professional guidelines with the primary goal of mitigating potential harms. (shrink)

This study investigated Belgian and Dutch parental opinions on confidentiality and consent regarding medical decisions about adolescents. Through an online survey, we presented six cases (three on confidentiality, and three on consent) to 1,382 Belgian and Dutch parents. We studied patterns in parental confidentiality and consent preferences across and between cases through binomial logistic regressions and latent class analysis. Participants often grant the right to consent for a treatment to the adolescent, but the majority diverges from the adolescent’s preferences (...) regarding confidentiality. More educated participants would rather not be informed about cases regarding a sexually transmitted disease or depression than lower educated participants. Further analysis shows that participants’ preferences correspond to authoritative (47%), permissive (30%) and authoritarian (17%) parenting styles. Belgian and Dutch parents are willing to grant some degree of autonomy, but they want to be informed about specific health issues. Parental views on confidentiality and granting consent appear to mirror existing parenting styles. (shrink)

Since USA constitutional precedent established in 1976, adolescents have increasingly been afforded the right to access contraception without first obtaining parental consent or authorisation. There is general agreement this ethically permissible. However, long-acting reversible contraception methods have only recently been prescribed to the adolescent population. They are currently the most effective forms of contraception available and have high compliance and satisfaction rates. Yet unlike other contraceptives, LARCs are associated with special procedural risks because they must be inserted and removed (...) by trained healthcare providers. It is unclear whether the unique invasive nature of LARC changes the traditional ethical calculus of permitting adolescent decision-making in the realm of contraception. To answer this question, we review the risk–benefit profile of adolescent LARC use. Traditional justifications for permitting adolescent contraception decision-making authority are then considered in the context of LARCs. Finally, analogous reasoning is used to evaluate potential differences between permitting adolescents to consent for LARC procedures versus for emergency and pregnancy termination procedures. Ultimately, we argue that the invasive nature of LARCs does not override adolescents’ unique and compelling need for safe and effective forms of contraception. In fact, LARCs may oftentimes be in the best interest of adolescent patients who wish to prevent unintended pregnancy. We advocate for the specific enumeration of adolescents’ ability to consent to both LARC insertion and removal procedures within state policies. Given the provider-dependent nature of LARCs and the stigma regarding adolescent sexuality, special political and procedural safeguards to protect adolescent autonomy are warranted. (shrink)

The United Nations Convention on the Rights of the Child risks harm to adolescents insofar as it encourages not only poor decision making by adolescents but also parenting styles that will have an adverse impact on the development of mature decision-making capacities in them. The empirical psychological and neurophysiological data weigh against augmenting and expression of the rights of children. Indeed, the data suggest grounds for expanding parental authority, not limiting its scope. At the (...) very least, any adequate appreciation of the moral claims regarding the authority of parents with respect to the decision-making capacity of adolescents needs to be set within an understanding of the psychological and neurophysiological facts regarding the development of adolescent decision-making capacity. (shrink)

The growing phenomenon of teenage pregnancy introduces the problem of who should serve as surrogate decision makers for the children of adolescent parents. The justifications which sanction society's grant of presumptive decision making authority for adult parents, and the rationales and empirical evidence supporting a central role for adolescents who wish to make medical decisions regarding their own care, together suggest that older adolescent parents should be viewed as the presumptive decision makers for their children. (...) There is, however, empirical evidence that adolescent parents lack the cognitive abilities of childless adolescents of the same age and that many exhibit lower levels of emotional stability, sensitivity to infant needs, and social adjustment. These deficiencies, where present, undermine the very justifications for allowing adolescents to make medical decisions for their children. These findings are strong enough to justify a greater level of watchfulness over the competency and decisions of those adolescents who wish to make decisions for their children, but not definitive enough to conclude that, as a group, they be presumed incapable of making those decisions. (shrink)

There is a gap in the clinical bioethics literature concerning the approach to assessment of medical decision-making capacity of adolescents or young adults who demonstrate diminished maturity due to longstanding reliance on caregiver support, despite having reached the age of majority. This paper attempts to address this question via the examination of a particular case involving assessment of the decision-making capacity of a young adult pregnant patient who also had a physically disabling neurological condition. Drawing (...) on concepts from adolescent bioethics and feminist critiques of bioethical theory, we argue that limited life experience, secondary to a disabling neurological condition, can result in a lack of adult-like capacity even in a patient who is legally an adult. In such cases, it may be that autonomy, to the extent that it is to be relevant and meaningful, must be viewed through a relational lens. Furthermore, clinicians may avoid unjustifiably paternalistic practices by working with the patient help her gain a better appreciation of the consequences of her decision, thereby calling forward her capacity rather than resorting to being directive in counseling. We conclude that lessons from this case can be used to approach ethically complex instances of medical decision-making in adult patients with normal cognition but diminished experiential maturity. (shrink)

In this paper I examine the debate between ‘protectionists’ and ‘liberationists’ concerning the appropriate role of minors in decision-making about their health care, focusing particularly on disagreements between the two sides regarding adolescents. Protectionists advocate a more traditional, paternalistic approach in which minors have relatively little input into the healthcare decision-making process, and decisions are made for them by parents or other adults, guided by a commitment to the patient's best interests. Liberationists, on the other (...) hand, argue in favour of expanded participation by minors in treatment decisions, and decision-making authority for at least some adolescents. My examination of the debate includes discussion of liberationist shifts that have taken place in the medical community as well as in legal policy and practice, and consideration of recent research on adolescent development. In the final section of the paper, I propose a moderate position that addresses both liberationist and protectionist concerns. (shrink)

Background Decision-making competence is a complex concept in the care for transgender and gender diverse adolescents, since this type of care concerns one’s developing gender identity and involves treatment options that often lack international consensus. Even despite competence assessments, moral challenges arise in the decision-making process. Here, traditional forms of clinical ethics support such as moral case deliberation might not fit as these do not provide thematic guidance. This study therefore aimed to develop a practice-oriented (...) ethics support tool to assist care providers when dealing with moral challenges around decision-making competence in transgender adolescent care. Methods The study followed a participatory design to develop a tool in close collaboration with care providers; they had a say in all phases of development and dissemination. Firstly, nine care providers were interviewed about experienced moral challenges and needs for ethics support. Based on this, the structure and content of the tool was constructed and discussed in two focus group meetings, after which four care providers tested the tool and additional feedback was collected from the team and an advisory board. The final tool was presented to all Dutch care providers in transgender adolescent care. Results Care providers expressed a need for guidance in defining and assessing decision-making competence. Main moral challenges concerned discussing fertility options with young clients, dealing with co-occurring mental health difficulties and the decision-making role of parents. The final tool, named the Competence Consultant, is an interactive pdf containing four parts: (1) Clarify information; (2) Identify doubts and moral questions; (3) Guidance for conversations and (4) Overview and Conclusions. Discussion Developing an ethics support tool in a controversial care setting is highly relevant as it aims to help individual care providers in defining, discussing and dealing with their moral challenges in actual practice. The ‘Competence Consultant’ for transgender care providers contributes to their moral sensitivity and moral competence. It is an example of the development of innovative and integrative forms of thematic ethics support. (shrink)

Whether adolescents should be allowed to make their own medical decisions has been a topic of discussion in bioethics for at least two decades now. Are adolescents sufficiently capacitated to make their own medical decisions? Is the mature-minor doctrine, an uncommon legal exception to the rule of parental decision-making authority, something we should expand or eliminate? Bioethicists have dealt with the curious liminality of adolescents—their being neither children nor adults—in a variety of ways. However, recently (...) there has been a trend to rely heavily, and often exclusively, on emerging neuroscientific and psychological data to answer these questions. Using data from magnetic resonance imaging and functional MRI studies on the adolescent brain, authors have argued both that the adolescent brain isn't sufficiently mature to broadly confer capacity on this population and that the adolescent brain is sufficiently mature to assume adolescent capacity. Scholars then accept these data as sufficient for concluding that adolescents should or should not have decision-making authority. Two critical mistakes are being made here. The first is the expectation that neuroscience or psychology is or will be able to answer all our questions about capacity. The second, and more concerning, mistake is the conflation of decision-making capacity with decision-making authority. (shrink)

Objectives: To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision-making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision-making.Method:‘Healthy Adolescents’ and their parents were recruited from four local secondary schools, and ‘Sick Adolescents’ and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, maturity in judgment, (...) risk-taking, openness to divergent opinions, pressure from parents and doctors, submission to parental authority and preference for autonomy in medical decision-making are surveyed by a 50-item questionnaire on a five-point Likert scale.Results: Findings indicate that Chinese adolescents aged 14–16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision-makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision-making.Conclusion:‘14-and-above’ Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision-making in medically-related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture. (shrink)

ABSTRACT Objectives: To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision‐making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision‐making. Method:‘Healthy Adolescents’ and their parents were recruited from four local secondary schools, and ‘Sick Adolescents’ and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, maturity (...) in judgment, risk‐taking, openness to divergent opinions, pressure from parents and doctors, submission to parental authority and preference for autonomy in medical decision‐making are surveyed by a 50‐item questionnaire on a five‐point Likert scale. Results: Findings indicate that Chinese adolescents aged 14–16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision‐makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision‐making. Conclusion:‘14‐and‐above’ Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision‐making in medically‐related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture. (shrink)

We applaud Notini and colleagues for highlighting the clinical and ethical complexities of a case in which a non-binary individual desires indefinite treatment with puberty blockers.1 While we agree discontinuing treatment may cause psychological distress, we believe there are potential physical and neurocognitive harms caused by prolonged treatment that have been underestimated given the limited research conducted to date. Specifically, the impact of permanent pubertal suppression on the brain and decision-making capacity should be considered. In this context, we (...) outline the potential risks of ongoing pubertal suppression on bone and cardiovascular health, sexual and reproductive function, and brain development—all noted in the article but perhaps in an overly simplistic manner.1 First, the authors’ note OPS will almost certainly result in reduced bone density.1 Although we agree the absolute fracture risk is low in studies among older adults, there is less clarity about implications during adolescence and young adulthood when peak bone accrual occurs.2 Further, the authors propose ongoing monitoring with bone density scans, but no clear guidelines for clinicians if bone density becomes critically low—so we ask, at what point would a potential fracture risk outweigh the proposed benefits …. (shrink)

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. (shrink)

Background: With multiple options available today to become a parent, how does the matter of genetic relatedness factor into adolescent cancer patients’ fertility preservation decision making? This study reports on and normatively analyzes this aspect of FP decision making. Methods: A convenience sample of Israeli adolescent cancer survivors and their parents were invited to participate in individual, semi-structured interviews. Results: In discussing the importance of genetic relatedness to future children or grandchildren, participants repeatedly brought up the (...) interrelated issues of nature, normalcy, and personal identity. Regardless of preference or ambivalence for genetic relatedness, the majority of participants were aware of alternative parenting options and noted both their advantages and disadvantages. However, knowledge of alternative parenting options was not uniform. Conclusions: To ensure that adolescent patients and their parents make informed FP decisions that meet their personal goals and values, it is important for physicians to discuss alternative parenting options with them in a culturally sensitive manner. Greater credence also should be given to those who question the importance of genetic relatedness. (shrink)

ABSTRACT Objectives: To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision‐making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision‐making. Method:‘Healthy Adolescents’ and their parents were recruited from four local secondary schools, and ‘Sick Adolescents’ and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, maturity (...) in judgment, risk‐taking, openness to divergent opinions, pressure from parents and doctors, submission to parental authority and preference for autonomy in medical decision‐making are surveyed by a 50‐item questionnaire on a five‐point Likert scale. Results: Findings indicate that Chinese adolescents aged 14–16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision‐makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision‐making. Conclusion:‘14‐and‐above’ Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision‐making in medically‐related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture. (shrink)

The current study mainly explored the influence of fluid intelligence and emotional intelligence on affective decision-making from a developmental perspective, specifically, during the transition from childhood into early adolescence. Meanwhile, their age-related differences in affective decision-making were explored. A total of 198 participants aged 8–12 completed the Iowa Gambling Task, the Cattell’s Culture Fair Intelligence Test and the Trait Emotional Intelligence Questionnaire-Child Form. Based on the net scores of IGT, the development of affective decision-making (...) ability did not increase monotonically with age, and there was a developmental trend of an impaired IGT performance in early adolescence, especially in the early learning phase of the IGT. More importantly, IQ and EI played different roles for children and early adolescents: IQ and EI jointly predicted the IGT performance for 8–10 years old children, whereas only EI contributed to the IGT performance of 11–12 years old early adolescents. The present study extends the evidence how cognitive processing and emotional processing interact in affective decision-making from the developmental perspective. Furthermore, it provides insights of future research and intervention with early adolescents’ poor affective decision-making. (shrink)

Advance care planning (ACP) is a process that seeks to elicit patients’ goals, values, and preferences for future medical care. While most commonly employed in adult patients, pediatric ACP is becoming a standard of practice for adolescent and young adult patients with potentially life-limiting illnesses. The majority of research has focused on patients and their families; little attention has been paid to the perspectives of healthcare providers (HCPs) regarding their perspectives on the process and its potential benefits and limitations. Focus (...) groups were conducted with 15 physicians as part of a larger study of adolescent and young adult ACP in hematopoietic stem cell transplant (HSCT) patients. This study identified two categories important to the utility of ACP in pediatric HSCT patients; (1) the temporal context of ACP and decision making and (2) the limitations of pediatric ACP, with subcategories identified as (a) embodied and witnessed knowing, (b) the impact of clinical cascades—when the treatment of one organ system creates complications in another system that needs to be treated—and a creation of a “new normal” following complications of illness and its treatment in the pediatric intensive care unit (PICU), (c) the balancing of adolescents’ autonomy with their capacity to make informed medical decisions, and (d) the epistemological frames that differ between HCP and patients and their families. These findings support ACP in adolescent and young adult HSCT patients, with a number of implications for practice as this process becomes more common. (shrink)

This article is about the information relevant to decision-making capacity in refusal of life-prolonging medical treatment cases. We examine the degree to which the phenomenology of the options available to the agent—what the relevant states of affairs will feel like for them—forms part of the capacity-relevant information in the law of England and Wales, and how this informational basis varies across adolescent and adult medical treatment cases. We identify an important doctrinal phenomenon. In the leading authorities, the courts (...) appear to count the first-personal phenomenology of the available options among the information that adolescents seeking to refuse life-prolonging treatment must understand and appreciate in order to possess capacity; adults are not held to this (higher) standard. We evaluate this differential treatment in light of philosophical work on transformative choice—decisions involving options whose sensory character, and effect on our values and preferences, are grasped only through experience itself. (shrink)

Medical practice should evolve alongside medical ethics. As our understanding of the ethical implications of physician-patient interactions becomes more nuanced, physicians should integrate those lessons into practice. As early as the 1930s, epidemiological studies began to identify that the rates of medical procedures varied significantly along geographic and socioeconomic lines. Dr. J. Alison Glover recognized that tonsillectomy rates in school children in certain school districts in England and Wales were in some cases eight times the rates of children in other (...) districts, with the only significant predictive factors being the current chief medical officer in the area and the socioeconomic well-being of the child's parents. Unfortunately, Dr. Glover's work revealed that the increase in tonsillectomies did not improve the health of adolescent patients and appeared to be performed “as a routine prophylactic ritual for no particular reason and with no particular result.”. (shrink)

Psychiatric disorders like eating disorders might be underpinned by differences in decision making. However, little previous research has investigated this potential relationship using longitudinal data. This study aimed to understand how components of decision making measured by the Cambridge Gambling Task in the United Kingdom’s Millennium Cohort Study at age 11 might explain clusters/types of ED prodrome involving body dissatisfaction, intention to lose weight, dietary restraint, excessive exercise and significant under/overweight measured in the MCS at age (...) 14. Latent class analysis revealed two groups within the cohort: a non-prodromal eating pathology group, who were more likely to be of “average” weight, according to the UK90, with minimal disordered attitudes and behaviors in relation to eating and weight; and a second group with prodromal eating pathology, who had more body dissatisfaction, a desire to lose weight, were using dietary restriction and exercise to influence weight and were more likely to be “overweight” according to the UK90. Logistic regression showed that, after adjustment for confounding, higher risk-taking scores were associated with a 60% greater probability of being in the prodromal eating pathology group, and higher scores on quality of decision making were associated with a 30% lower probability of being in the prodromal eating pathology group. Helping young people to engage in moderate risk taking and improving decision making might reduce the later presence of ED prodromes. (shrink)

In Roper v. Simmons (2005) the United States Supreme Court announced a paradigm shift in jurisprudence. Drawing specifically on mounting scientific evidence that adolescents are qualitatively different from adults in their decision-making capacities, the Supreme Court recognized that adolescents are not adults in all but age. The Court concluded that the overwhelming weight of the psychological and neurophysiological data regarding brain maturation supports the conclusion that adolescents are qualitatively different types of agents than adult persons. (...) The Supreme Court further solidified its position regarding adolescents as less than fully mature and responsible decisionmakers in Graham v. Florida (2010) and Miller v. Alabama (2012). In each case, the Court concluded that the scientific evidence does not support the conclusion that children under 18 years of age possess adult capacities for personal agency, rationality, and mature choice. This study explores the implications of the Supreme Court decisions in Roper v. Simmons, Graham v. Florida, and Miller v. Alabama for the “mature minor” standard for medical decision making. It argues that the Supreme Court’s holdings in Roper, Graham, and Miller require no less than a radical reassessment of how healthcare institutions, courts of law, and public policy are obliged to regard minors as medical decisionmakers. The “mature minor” standard for medical decision making must be abandoned. (shrink)

According to what members of our research team (Scholten and Gather 2017) have proposed to call “the competence model,” competence is a necessary condition for informed consent. This model entails...

This paper discusses the use of deep brain stimulation for the treatment of neurological and psychiatric disorders in children. At present, deep brain stimulation is used to treat movement disorders in children and a few cases of deep brain stimulation for psychiatric disorders in adolescents have been reported. Ethical guidelines on the use of deep brain stimulation in children are therefore urgently needed. This paper focuses on the decision-making process, and provides an ethical framework for (future) treatment (...) decisions in pediatric deep brain stimulation. I defend a shared decision-making model in case of deep brain stimulation for neurological and psychiatric disorders in children. To protect the vulnerable child patient, a dual consent process is needed where parents or parental guardians give their consent, and the child gives his/her assent. (shrink)

BackgroundStreet-connected children and youth in low- and middle-income countries have multiple vulnerabilities in relation to participation in research. These require additional considerations that are responsive to their needs and the social, cultural, and economic context, while upholding core ethical principles of respect for persons, beneficence, and justice. The objective of this paper is to describe processes and outcomes of adapting ethical guidelines for SCCY’s specific vulnerabilities in LMIC.MethodsAs part of three interrelated research projects in western Kenya, we created procedures to (...) address SCCY’s vulnerabilities related to research participation within the local context. These consisted of identifying ethical considerations and solutions in relation to community engagement, equitable recruitment, informed consent, vulnerability to coercion, and responsibility to report.ResultsSubstantial community engagement provided input on SCCY’s participation in research, recruitment, and consent processes. We designed an assent process to support SCCY to make an informed decision regarding their participation in the research that respected their autonomy and their right to dissent, while safeguarding them in situations where their capacity to make an informed decision was diminished. To address issues related to coercion and access to care, we worked to reduce the unequal power dynamic through street outreach, and provided access to care regardless of research participation.ConclusionsAlthough a vulnerable population, the specific vulnerabilities of SCCY can to some extent be managed using innovative procedures. Engaging SCCY in ethical research is a matter of justice and will assist in reducing inequities and advancing their health and human dignity. (shrink)

In debates about genetic testing of children, as well as about disclosing unsolicited findings (UFs) of pediatric exome sequencing, respect for future autonomy should be regarded as a prima facie consideration for not taking steps that would entail denying the future adult the opportunity to decide for herself about what to know about her own genome. While the argument can be overridden when other, morally more weighty considerations are at stake, whether this is the case can only be determined in (...) concrete cases. Importantly, when children grow into adolescents, respect for future autonomy will have to give way to respecting their emerging autonomy. When pediatric exome sequencing is done for complex conditions not involving developmental delay, respect for the child’s future or emerging autonomy should be a primary consideration for those charged with deciding on behalf of the child. Building on what Emanuel and Emanuel have termed the ‘deliberative model’ of shared decision making, we argue that if parents fail to give these considerations their due, professionals should actively invite them to do so. Taking a directive stance may be needed in order to make sure that the future or emerging autonomy of the child are duly considered in the decision-making process, but also to help the parents and themselves to shape their respective roles as responsible care-givers. (shrink)

This article argues that standard models of person-centred care (PCC) and shared decision making (SDM) rely on simplistic, often unrealistic assumptions of patient capacities that entail that PCC/SDM might have detrimental effects in many applications. We suggest a complementary PCC/SDM approach to ensure that patients are able to execute rational decisions taken jointly with care professionals when performing self-care. Illustrated by concrete examples from a study of adolescent diabetes care, we suggest a combination of moral and psychological considerations (...) to support the claim that standard PCC/SDM threatens to systematically undermine its own goals. This threat is due to a tension between the ethical requirements of SDM in ideal circumstances and more long-term needs actualized by the context of self-care handled by patients with limited capacities for taking responsibility and adhere to their own rational decisions. To improve this situation, we suggest a counseling, self-care, adherence approach to PCC/SDM, where more attention is given to how treatment goals are internalized by patients, how patients perceive choice situations, and what emotional feedback patients are given. This focus may involve less of a concentration on autonomous and rational clinical decision making otherwise stressed in standard PCC/SDM advocacy. (shrink)

Altruism is a well-established reason underlying research participation. Less is known about altruism in adolescent-parent decision-making about clinical trials enrolling healthy adolescents. This qualitative investigation focused on identifying spontaneous statements of altruism within adolescent-parent discussions of participation in a hypothetical phase I clinical trial related to adolescent sexual health. Content analysis revealed several response patterns to each other’s altruistic reasoning. Across 70 adolescent-parent dyads in which adolescents were 14 to 17 years of age and 91% of (...) their parents were mothers, a majority of dyadic discussions included a statement reflecting altruism. Parents responded to adolescents’ statements of altruism more frequently than adolescents responded to parents’ statements. Responses included: expresses concern, reiterates altruistic reasoning, agrees with altruistic reasoning, and adds to/expands altruistic reasoning. Since an altruistic perspective was often balanced with concerns about risk or study procedures, researchers cannot assume that altruism will directly lead to study participation. Optimizing the informed consent process for early phase clinical trials involving healthy adolescents may include supporting parents to have conversations with their adolescents which will enhance their capacity to consider all aspects of trial participation. (shrink)

Within bioethics as well as in broader clinical practice, support for transgender and gender‐questioning adolescent access to pubertal suppression has often relied heavily on the desire to prevent risky, self‐destructive, and suicidal behavior. We argue that framing justifications for access to puberty suppression in this way can actually be harmful to both individual patients as well as to the broader trans population. This justification for access to care makes such access precarious, limits its scope, and introduces perverse incentives to the (...) patient population that is being served. We go on to offer an alternative, positive defense of access to puberty‐blocking treatment for transgender youth grounded in the child's right to an open future. We argue that decisions related to pubertal suppression are both importantly weighty and potentially irreversible, and show why this justification is preferable to so‐called “informed consent” approaches. (shrink)

This case describes an adolescent in a crisis of a chronic medical condition whose situation is complicated by substance abuse and mental illness. D. Micah Hester provides an analytic approach, teasing apart the multiple layers of medical, developmental, and moral issues at hand and describing possible responses and outcomes. Amy T. Campbell examines existing legal guidelines for adolescent decision making, arguing that greater space exists for clinical discretion in these matters than commonly thought. Cheryl D. Lew discusses the (...) development of agency in adolescent patients, the ideal of autonomous decision making in the context of impairment and chronic illness, and the obligation of healthcare teams to examine an adolescent patient’s decisions in relation to her identity. (shrink)

The purpose of this study was to explore the relationship between parenting styles and career decision-making difficulties in college students, and uncovered the mediating roles of core self-evaluation and career calling. A total of 1,127 undergraduates were recruited to complete the questionnaires about parenting styles, core self-evaluation, career calling, and career decision-making difficulties. The results showed that: Positive and negative parenting styles could positively predict career decision-making difficulties in college students. Core self-evaluation and career (...) calling mediated the relationship between parenting styles and career decision-making difficulties. Sequential dual mediators only found in which positive paternal and maternal parenting styles predict career decision-making difficulties through core self-evaluation and career calling. Further analysis revealed gender difference in the relationship between parenting styles and career decision-making difficulties. The relation between paternal positive parenting style and career decision-making difficulties was significant in male students, but absent in female students; the relation between maternal positive parenting and career decision-making difficulties and the relation between paternal negative parenting and career calling were significant in female students, but absent in male students; and the relation between career calling and career decision-making difficulties was greater in male than in female. The current study expanded and deepened those existing understandings about the relationship between parenting styles and adolescents’ career decisions, so as to further reveal its internal mechanism and provide more reasonable suggestions and targeted guidance for career counseling. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Introduction to the Special Issue on Pediatric Decision-MakingErica K. SalterUnlike in the traditional decisional dyad in adult-based care, pediatric decision-making typically involves a triadic relationship among the patient, their parents, and the health-care providers. This complex relationship raises questions and concerns regarding each party’s expectations, obligations, and authority. For example, should a parent be allowed to withhold a poor diagnosis from an adolescent patient? Should an (...) HLA-matched six-year-old sister be permitted to serve as a bone marrow donor for her older sibling with lysosomal storage disease? Or, should parents be given decisional authority to consent to gender-affirming care for an adolescent with gender dysphoria? Cases like these are among the most ethically challenging decisions faced by parents and health-care providers because they present competing interests and values, and it’s not always clear what is in the best interests of the child.In the context of American medicine, the best interest standard has been identified as the primary ethical and legal guide for decision-making. In its most prominent form, the best interest standard requires parents and pediatric practitioners to choose the medical treatment that maximizes benefits and minimizes harms to the particular child in question. However, over the past few decades, the standard has come under significant scrutiny, with discussions and debate in the academic bioethics literature asking whether the standard is able to serve the [End Page 181] purposes it is thought to serve and whether alternative standards might be better suited to the task(s). Despite vigorous interest in these issues, the academic literature did not seem to generate any sense of identifiable consensus about how others ought to make health-care decisions on behalf of children.Thus, in June 2022, 17 scholar-experts on pediatric decision-making standards gathered in St. Louis, MO, for a three-day symposium of discussion and consensus-building. The participating authors represented different disciplinary perspectives and different viewpoints in the debate about guidance principles that underlie pediatrics. Despite apparent disagreement about such standards in the literature, the group was able to generate a set of six consensus-based recommendations (see Table 1) for pediatric decision-making. These recommendations, as well as their application, justification, and limitations, were published as a special article in Pediatrics in August 2023 (Salter et al. 2023), which was composed with the primary goals of accessibility, teachability, and implementability for practicing pediatric clinicians. Click for larger view View full resolutionTable 1.Six consensus recommendations for pediatric decision-makingWhile the group was able to find agreement about these six central principles of pediatric decision-making, there remained several related issues that were outside of the scope of the symposium aims. For example, should these recommendations apply to neonates, children in state custody, or adolescents, and if so, how would their application be operationalized? What specific conditions should justify state intervention on parental authority? How should parents and health-care providers think about obligations to siblings in health-care decisions? This [End Page 182] special issue of Perspectives in Biology and Medicine provides a forum for our authors and collaborators to further explore these, and other, important questions.The issue opens with a piece by the symposium organizers and editors of this special issue, Erica Salter, Lainie Friedman Ross, and D. Micah Hester, describing the symposium’s inspiration and design, its execution, and the implications it might have for pediatric ethics. This contribution compares the six symposium recommendations with existing statements about pediatric decision-making, in particular the statements developed by the American Academy of Pediatrics (AAP). In “How We Found Consensus on Pediatric Decision-Making and Why It Matters,” readers will find a detailed account of the process engaged to develop the six consensus-based recommendations, as well as a discussion of the value and limitations of such a process, which may serve as a model of consensus-building useful for other unsettled topics of interest in the bioethics community.The issue’s second article, “Childhood Interests: What They Are, and Why It Matters,” by Johan Bester and Jeffrey Blustein, dives into the conceptual foundation of the symposium’s first two recommendations. This... (shrink)

Parental decision making is necessary for contracting medical interventions that require personal risk–benefit evaluation, and for overseeing matters of education. In the nineteenth century, exemptions from obligatory vaccination were granted for religious and conscientious reasons. Then and today, religion and moral values play marginal roles in vaccine hesitancy and denialism. Rather, the key values invoked by vaccine hesitants and denialists are liberty and pluralism. Neither is compatible with limiting adolescents’ choice. Because vaccination does not require assessment of (...) personal medical risks, because it does not need to occur within the sphere of the doctor–patient relationship, and because the risk involved is within the range of their daily activities, adolescents have the right to free access to vaccination without legal requirement of parental involvement. Drawing on the development of Common Law, and on the development of respect for personal conscience in the history of ideas, this paper does not promote an argument that grants public health an overriding moral power. Rather, this paper rejects the presumption that vaccination of adolescents might involve a conflict between parental authority and public health. Free access to vaccination is compatible with the law and ethics of adolescents’ evolving autonomy in relation to healthcare. (shrink)

There are important ethical issues to be examined before launching any public health intervention, particularly when targeting vulnerable groups. The aim of this article is to identify and discuss ethical concerns that may arise when intervening for health behavior change among adolescents identified as overweight. These concerns originate from an intervention designed to capacitate adolescents to increase self-determined physical activity. Utilizing an ethical framework for prevention of overweight and obesity, we identified three ethical aspects as particularly significant: the (...) attribution of responsibility for health behavior, liberty to choose, and the effect on the participants’ psychosocial well-being. It is discussed whether and how measures can be taken to deal with these aspects. It seems evident that the ethical aspects are mainly concerned with the vulnerability of adolescents identified as overweight. However, we claim that when individual feedback and counseling is provided, tailored interventions have a unique potential to empower adolescents to make ethically anchored decisions about their own health behavior. (shrink)

Essays and articles in the November‐December 2022 issue of the Hastings Center Report explore the complexities of medical decision‐making. A case‐study essay, for example, argues that the dismaying decision to perform resuscitation efforts on a patient who had obviously been dead for some time can be understood in the context of the harmful practice of defensive medicine. A narrative essay concerns whether an adolescent with locked‐in syndrome should be asked her wishes about life‐sustaining interventions, and the articles (...) illuminate the ethical value of the parental role in pediatric decision‐making, an array of ways in which patient decision‐making is interdependent, and the limitations of measures designed to evaluate the quality of a patient's decision and decision‐making process. (shrink)

There are important ethical issues to be examined before launching any public health intervention, particularly when targeting vulnerable groups. The aim of this article is to identify and discuss ethical concerns that may arise when intervening for health behavior change among adolescents identified as overweight. These concerns originate from an intervention designed to capacitate adolescents to increase self-determined physical activity. Utilizing an ethical framework for prevention of overweight and obesity, we identified three ethical aspects as particularly significant: the (...) attribution of responsibility for health behavior, liberty to choose, and the effect on the participants’ psychosocial well-being. It is discussed whether and how measures can be taken to deal with these aspects. It seems evident that the ethical aspects are mainly concerned with the vulnerability of adolescents identified as overweight. However, we claim that when individual feedback and counseling is provided, tailored interventions have a unique potential to empower adolescents to make ethically anchored decisions about their own health behavior. (shrink)

US Supreme Court rulings concerning sanctions for juvenile offenders have drawn on the science of brain development and concluded that adolescents are inherently less mature than adults in ways that render them less culpable. This conclusion departs from arguments made in cases involving the mature minor doctrine, in which teenagers have been portrayed as comparable to adults in their capacity to make medical decisions. I attempt to reconcile these apparently incompatible views of adolescents’ decision-making competence. (...) class='Hi'>Adolescents are indeed less mature than adults when making decisions under conditions that are characterized by emotional arousal and peer pressure, but adolescents aged 15 and older are just as mature as adults when emotional arousal is minimized and when they are not under the influence of peers, conditions that typically characterize medical decision-making. The mature minor doctrine, as applied to individuals 15 and older, is thus consistent with recent research on adolescent development. (shrink)

Decisions concerning children in the health care setting have engendered significant controversy and sparked ethics policies and statements, legal action, and guidelines regarding who ought to make decisions involving children and how such decisions ought to be made. Traditionally, parents have been the default decision-makers for children not only with regard to health care but with regard to other matters, such as religious practice and education. In recent decades, there has been a steady trend away from the view that (...) parents are in authority over their children and toward the view that children are rights-bearers who should be granted greater authority over themselves. The mature minor doctrine refers to the decision to grant mature minors the authority to make decisions traditionally reserved for their parents. This essay (1) documents the trend towards expanding the understanding of some minors as “mature” and hence as having the right and authority to give informed consent, (2) examines the reasons for which some commentators have a special interest in expanding the mature minor doctrine to the research setting and allowing minors to enroll in research without parental permission, and (3) defends the view that the mature minor doctrine, regardless of its application to clinical health care decisions, ought to be set aside in the research setting in favor of greater parental involvement. (shrink)