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)

The American Journal of Bioethics, Volume 12, Issue 8, Page 11-13, August 2012.

The American Journal of Bioethics, Volume 12, Issue 8, Page 13-15, August 2012.

(No abstract is available for this citation).

Child assent is recommended in addition to parental consent when enrolling children in clinical research; however, appreciation and relevance ascribed to these concepts vary in different contexts, and information on attitudes towards storage of biological samples for future research is limited, especially in developing countries. We assessed caregivers’ understanding and appreciation of consent and assent procedures, and their attitudes towards use of stored blood samples for future research prior to enrolling a child in clinical research. A total of 17 in-depth (...) interviews were conducted with primary caregivers of children at enrolment or on the immediate follow-up date. All caregivers recalled significant amount information from the study information sheet and were able to appropriately link such information to the consent process. While all participants confirmed information received prior to blood sampling as adequate, a few noted that the purpose was not sufficiently well communicated. Caregivers felt children were cognitively vulnerable, and prone to decisions that were not necessarily in their best interest. Nearly all caregivers felt it was their right and responsibility to overrule objections from their ward’s regarding enrolment into specific study or receipt of a therapeutic procedure. There were no objections or concerns regarding use of stored biological samples for future research purposes. There is thus, a need to improve understanding of caregivers on the information provided during the informed consent process. Context-specific studies on the age of assent in specific populations are needed. (shrink)

Contemporary bioethics is, at least in part, the product of biomedical and sociopolitical changes in the middle to latter part of the 20th century. These changes prompted reflection on deep moral questions at a time when traditional sources of moral guidance no longer were widely respected and, in some cases, were being rejected. In light of this, scholars, policy makers, and clinicians sought to identify a common morality that could be used among persons with different moral commitments to resolve disputes (...) and guide clinical practice and health policy. The concept of the common morality remains important in bioethics. This essay considers the common morality in light of the work of H. Tristram Engelhardt, Jr. (shrink)

Moral and legal notions engaged in clinical ethics should not only possess analytic clarity but a sound basis in empirical findings. The latter condition brings into question the expansion of the mature minor exception. The mature minor exception in the healthcare law of the United States has served to enable those under the legal age to consent to medical treatment. Although originally developed primarily for minors in emergency or quasi-emergency need for health care, it was expanded especially from the 1970s (...) in order to cover unemancipated minors older than 14 years. This expansion initially appeared plausible, given psychological data that showed the intellectual capacity of minors over 14 to recognize the causal connection between their choices and the consequences of their choices. However, subsequent psychological studies have shown that minors generally fail to have realistic affective and evaluative appreciations of the consequences of their decisions, because they tend to over-emphasize short-term benefits and underestimate long-term risks. Also, unlike most decisionmakers over 21, the decisions of minors are more often marked by the lack of adequate impulse control, all of which is reflected in the far higher involvement of adolescents in acts of violence, intentional injury, and serious automobile accidents. These effects are more evident in circumstances that elicit elevated affective responses. The advent of brain imaging has allowed the actual visualization of qualitative differences between how minors versus persons over the age of 21 generally assess risks and benefits and make decisions. In the case of most under the age of 21, subcortical systems fail adequately to be checked by the prefrontal systems that are involved in adult executive decisions. The neuroanatomical and psychological model developed by Casey, Jones, and Summerville offers an empirical insight into the qualitative differences in the neuroanatomical and neuropsychological bases of adolescent versus adult decision making. These and other data, as well as developing law bearing on the culpability of juvenile criminal offenders, argue for critically re-evaluating the expansion of the mature minor exception with regard to medical decision making, as well as in support of a rebuttable presumption in favor of treating minors as immature decisionmakers. The clinical ethics of adolescent medical decision making will need foundationally to be reconsidered. (shrink)

Standard models of adolescent risk taking posit that the cognitive abilities of adolescents and adults are equivalent, and that increases in risk taking that occur during adolescence are the result of socio emotional differences in impulsivity, sensation seeking, and lack of self-control. Fuzzy-trace theory incorporates these socio emotional differences. However, it predicts that there are also cognitive differences between adolescents and adults, specifically that there are developmental increases in gist-based intuition that reflects understanding. Gist understanding, as opposed to verbatim-based analysis, (...) generally has been hypothesized to have a protective effect on risk taking in adolescence. Gist understanding is also an essential element of informed consent regarding risks in medical decision- making. Evidence thus supports the argument that adolescents’ status as mature minors should be treated as an exception rather than a presumption, because accuracy in verbatim analysis is not mature gist understanding. Use of the exception should be accompanied by medical experts’ input on the bottom-line gist of risks involved in treatment. (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)

For decades, the discussion on children’s competence to consent to medical issues has concentrated around normative concerns, with little progress in clinical practices. Decision-making competence is an important condition in the informed consent model. In pediatrics, clinicians need to strike a proper balance in order to both protect children’s interests when they are not fully able to do so themselves and to respect their autonomy when they are. Children’s competence to consent, however, is currently not assessed in a standardized way. (...) Moreover, the correlation between competence to give informed consent and age in children has never been systematically investigated, nor do we know which factors exactly contribute to children’s competence. (shrink)

Participation in healthcare decision-making is considered to be an important right of minors, and is highlighted in both international legislation and public policies. However, despite the legal recognition of children’s rights to participation, and also the benefits that children experience by their involvement, there is evidence that legislation is not always translated into healthcare practice. There are a number of factors that may impact on the ability of the child to be involved in decisions regarding their medical care. Some of (...) these factors relate to the child, including their capacity to be actively involved in these decisions. Others relate to the family situation, sociocultural context, or the underlying beliefs and practices of the healthcare provider involved. In spite of these challenges to including children in decisions regarding their clinical care, we argue that it is an important factor in their treatment. The extent to which children should participate in this process should be determined on a case-by-case basis, taking all of the potential barriers into account. (shrink)

BackgroundFor many decades, the debate on children’s competence to give informed consent in medical settings concentrated on ethical and legal aspects, with little empirical underpinnings. Recently, data from empirical research became available to advance the discussion. It was shown that children’s competence to consent to clinical research could be accurately assessed by the modified MacArthur Competence Assessment Tool for Clinical Research. Age limits for children to be deemed competent to decide on research participation have been studied: generally children of 11.2 (...) years and above were decision-making competent, while children of 9.6 years and younger were not. Age was pointed out to be the key determining factor in children’s competence. In this article we reflect on policy implications of these findings, considering legal, ethical, developmental and clinical perspectives.DiscussionAlthough assessment of children’s competence has a normative character, ethics, law and clinical practice can benefit from research data. The findings may help to do justice to the capacities children possess and challenges they may face when deciding about treatment and research options. We discuss advantages and drawbacks of standardized competence assessment in children on a case-by-case basis compared to application of a fixed age limit, and conclude that a selective implementation of case-by-case competence assessment in specific populations is preferable. We recommend the implementation of age limits based on empirical evidence. Furthermore, we elaborate on a suitable model for informed consent involving children and parents that would do justice to developmental aspects of children and the specific characteristics of the parent-child dyad.SummaryPrevious research outcomes showed that children’s medical decision-making capacities could be operationalized into a standardized assessment instrument. Recommendations for policies include a dual consent procedure, including both child as well as parents, for children from the age of 12 until they reach majority. For children between 10 and 12 years of age, and in case of children older than 12 years in special research populations of mentally compromised patients, we suggest a case-by-case assessment of children’s competence to consent. Since such a dual consent procedure is fundamentally different from a procedure of parental permission and child assent, and would imply a considerable shift regarding some current legislations, practical implications are elaborated. (shrink)