This study explores the ways in which adolescents, even so-called “mature minors”, lack adequate development of the intellectual, affective, and emotional capacities necessary morally to consent to medical research on their own behalf. The psychological and neurophysiological data regarding brain maturation supports the conclusion that adolescents are qualitatively different types of agents than mature adults. They lack full adult maturity and personal agency. As a result, in addition to the usual requirements for IRB approval, one or both parents, or a (...) legal guardian, should provide informed consent for minor children to participate in medical research. (shrink)

This case raises a number of complex ethical, legal, and practical issues, some of which cannot be resolved by a research ethics consultation. Sam is an adolescent who has end stage manifestations...

This special thematic issue of The Journal of Medicine and Philosophy brings together a cross-cultural set of scholars from Asia, Europe, and North America critically to explore foundational questions of familial authority and the implications of such findings for organ procurement policies designed to increase access to transplantation. The substantial disparity between the available supply of human organs and demand for organ transplantation creates significant pressure to manipulate public policy to increase organ procurement. As the articles in this issue explore, (...) however, even if well intentioned, the desire to maximize organ procurement does not justify undermining foundational elements of human flourishing, such as the family. While defending at times quite different understandings of autonomy, informed consent, and familial authority, each author makes clear that a principled appreciation of the family is necessary. Otherwise, health care practice will treat the family in a cynical and instrumental fashion unlikely to support social or individual good. (shrink)

Do adolescents have the decisional capacity of adults? Or, are they in crucial ways still immature, that is, are they deficient decisionmakers? This questi.

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)

With an overall estimated 5-year survival rate of 67 percent, bone marrow transplant is a potential cure for patients with primary immune regulatory diseases. Given that Sa...

The article analyzes three different cases of clinical research in which children are asked to participate. Participation of children in researches is one of the major challenges for Bioethics and societies nowadays due to the tensions and issues concerning the guarantee of rights in clinical research, the responsibilities of the different actors involved, and the purpose of improving the quality of life without affecting scientific freedom and new knowledge production. The aim of the article is to establish the way in (...) which autonomy is exercised, considering ethical and regulative aspects within clinical research involving children. In order to achieve such a purpose, case study research methodology is employed, revealing the tensions and ethical issues involved in this particular kind of clinical research as well as considering international documents and the national regulation regarding this particular problem. (shrink)