From Law to Practice; Towards a Roadmap to Strengthen Children's Rights in the Era of Biomedicine (original) (raw)
Toward a Child Rights Theory in Pediatric Bioethics
Perspectives in Biology and Medicine, 2016
This article offers a child rights theory in pediatric bioethics, applying the principles, standards, and norms of child rights, health equity, and social justice to medical and ethical decision-making. We argue that a child rights theory in pediatric bioethics will help pediatricians and pediatric bioethicists analyze and address the complex interplay of biomedical and social determinants of child health. These core principles, standards and norms, grounded in the U.N. Convention on the Rights of the Child (CRC), provide the foundational elements for the theory and a means for better understanding the complex determinants of children's health and well-being. Rights-based approaches to medical and ethical decision-making provide strategies for applying and translating these elements into the practice of pediatrics and pediatric bioethics by establishing a coherent, consistent, and contextual theory that is relevant to contemporary practice. The proposed child rights theory extends evolving perspectives on the relationship between human rights and bioethics to both child rights and pediatric bioethics.
Beyond Bioethics: A Child Rights–Based Approach to Complex Medical Decision-Making
Perspectives in Biology and Medicine, 2016
This analysis adopts a child rights approach-based on the principles, standards, and norms of child rights and the U.N. Convention on the Rights of the Child (CRC)-to explore how decisions could be made with regard to treatment of a severely impaired infant (Baby G). While a child rights approach does not provide neat answers to ethically complex issues, it does provide a framework for decision-making in which the infant is viewed as an independent rights-holder. The state has obligations to develop the capacity of those who make decisions for infants in such situations to meet their obligations to respect, protect, and fulfill their rights as delineated in the CRC. Furthermore, a child rights approach requires procedural clarity and transparency in decision-making processes. As all rights in the CRC are interdependent and indivisible, all must be considered in the process of ethical decision-making, and the reasons for decisions must be delineated by reference to how these rights were considered. It is also important that decisions that are made in this context be monitored and reviewed to ensure consistency. A rights-based framework ensures decision-making is child-centered and that there are transparent criteria and legitimate procedures for making decisions regarding the child's most basic human right: the right to life, survival, and development.
Perspectives in biology and medicine, 2016
This article provides support for the use of a particular international human rights law document, the U.N. Convention on the Rights of the Child (CRC), in contemporary pediatric bioethics practice without relying on the legally binding force of the document. It first demonstrates that the CRC's core commitments and values substantially overlap with the core commitments and values of mainstream bioethics and with the laws of many domestic jurisdictions where mainstream bioethics are currently practiced. It then explores some implications of this overlap. For instance, the substantial international human rights law scholarship on how to understand these commitments and values can be helpful in suggesting ways to operationalize them in domestic bioethics practice and can offer insightful, internationally generated ethical perspectives that may not have been considered. The article also argues that the CRC can help health-care organizations develop policies consistent with the best...
Perspectives in Biology and Medicine, 2016
This article provides an overview of the relevance and import of the U.N. Convention on the Rights of the Child (CRC) to child health practice and pediatric bioethics. We discuss the four general principles of the CRC that apply to the implementation of all rights contained in the document, the right to health articulated in Article 24, and the important position ascribed to parents in fulfilling the rights of their children. We then examine how the CRC is implemented and monitored in law and practice. The CRC and associated principles of child rights provide strategies for rights-based approaches to clinical practice and health systems, as well as to policy design, professional training, and health services research. In light of the relevance of the CRC and principles of child rights to children's health and child health practice, it follows that there is an intersection between child rights and pediatric bioethics. Pediatric bioethicists and child rights advocates should work together to define this intersection in all domains of pediatric practice. T he U.N. Convention on the Rights of the Child (CRC) is among the most comprehensive of all international human rights covenants. It was adopted by the U.N. General Assembly in 1989, following a decade of discussion and debate *Child to Child,
Children's Rights in Clinical Research
Journal of Nursing Scholarship, 2000
Purpose: To address the use of children and children's genetic information in research, analyze Icelandic laws as an example, review existing literature on children in clinical research, and describe nurses' actions as children's advocates.Method: An integrated literature review was conducted using theoretical and empirical literature on children as human subjects in clinical research. Five Icelandic laws were analyzed.Findings: Legal protection of children as human subjects is an international issue and is lacking in Icelandic legislation. In spite of an identified need to protect children as human subjects, research on children's rights in clinical research is scarce. Nurses have not taken an active stance in protecting children as human subjects.Conclusions: The recently passed Bill on Health Sector Database in Iceland raises questions about protection of human subjects regardless of age and stature. The effects of this Icelandic case could have international implications regarding centralized health care databases, ownership of data, and related ethical and legal decisions.
The legal ethics of pediatric research
Duke law journal, 2007
Since the mid- to late 1990s, the scientific and medical research community has sought to increase its access to healthy children for research protocols that involve harm or a risk of harm. This move reverses longstanding policy within that community generally to exclude healthy children from such protocols on the grounds that the research as to them is non-therapeutic, that they are particularly vulnerable to research-related abuses, and that they are unable themselves to give informed consent to their participation. The research community's new posture has been supported by prominent pediatric bioethicists who have argued that unless healthy children are included as research subjects in harmful or risky research, the pediatric population will continue to suffer relative to the adult population in the extent to which it benefits from modern advances in science and medicine. In their view, it is possible for the research community to self-administer a rule that strikes a balance...
Bioethics And Law: A Developmental Perspective
Bioethics, 1997
In most Western countries, health law bioethics are strongly intertwined. This strong connection is the result of some specific factors that, in the early years of these disciplines, facilitated a rapid development of both. In this paper, I analyse these factors and construe a development theory existing of three phases, or idealtypical models.
Las Torres de Lucca 13(2), 2024
In recent years, children and young people (CYP) have been increasingly included in patient and public involvement (PPI) in health research and innovation. Such initiatives intend to give a voice to CYP in such matters. Given that it is debated whether PPI in health care fosters the values of participation, public discussion and decision making put forward by deliberative democracy, this article examines three sets of challenges concerning the involvement of CYP by focusing on age biases. After describing some existing initiatives, the paper critically examines why CYP are involved, how the CYP group is constituted and then investigates the moral status of CYP in biomedical settings. It shows that the rationale for involving CYP in PPI is mainly top-down and adult-centric, thereby questioning the authentic participation in decision making. It also suggests that to ensure democratic inclusion, the CYP group should be constituted by considering both age and politics. Lastly, the article indicates that, despite the increasing recognition of child-specific rights, the sociocultural norms and power dynamics in pediatrics undermine their moral status and challenge political equality. These three sets of considerations offer a preliminary theoretical contribution toward improving democratic legitimacy and representation of CYP in health research and innovation. https://revistas.ucm.es/index.php/LTDL/article/view/92578
Defining the Boundaries of a Right to Adequate Protection: A New Lens on Pediatric Research Ethics
The Journal of medicine and philosophy, 2017
We argue that the current ethical and regulatory framework for permissible risk levels in pediatric research can be helpfully understood in terms of children's moral right to adequate protection from harm. Our analysis provides a rationale for what we propose as the highest level of permissible risk in pediatric research without the prospect of direct benefit: what we call "relatively minor" risk. We clarify the justification behind the usual standards of "minimal risk" and "a minor increase over minimal risk" and explain why it is permissible to impose any risks at all on child participants who do not stand to benefit directly from enrollment in research. Finally, we illuminate some aspects of the concept of "best interests."
Book Review of The Best Interests of the Child in Healthcare
2008
Sarah Elliston, a lecturer in medical law at the University of Glasgow, has produced an accessible treatise-like work that should serve as a useful reference for British academics in law and medicine and as an engaging introduction to the law governing medical decision making for children for a general British audience. After an opening chapter in which she identifies many of the difficult ethical questions that arise with more serious medical interventions for children, Elliston presents five additional chapters, in each of which she summarizes the law and empirical literature relevant to answering one or more of these questions: when should children themselves have the power to decide whether they will receive medical care, how should decisions be made by others for a child who is too young to be given that power, when should a parent have the power to refuse treatment for a child against the recommendation of medical professionals, to what extent should genetically impaired infants receive life-prolonging treatment, and when is it permissible to use one child to benefit othersin particular, as research subjects or as organ donors?
MEDICAL ETHICS AND PEDIATRIC DECISION MAKING: LEGAL FRAMEWORK AND BEST INTEREST
Nancy Christian, 2024
It is a fundamental principle of medical law and ethics that a medical practitioner should obtain the informed consent of a competent patient before treating such a patient. This is in tandem with the 'principle of autonomy' and best interests of a patient. In real life, decision-making ability cannot be as simple as it sounds. When one really examines the specifics of its real world application and the issues that arise from it, its complexity becomes clear. The most complex of these complexities seems to be the possibility of ambiguity and fluidity when determining whether or not a patient has the ability. This study is a wake-up call to all sundry to recognize, promote and enforce rights of the child in every sphere. The study examines numerous legal frameworks that provide for the protection of their rights. Accordingly, in achieving this objective, the researcher adopted doctrinal method. This work therefore, considers how decisions made on behalf of those lacking capacity (in the medical context) under the Nigerian legal systems meet the needs of our contemporary societies with the aim of recommending the best practices for Nigeria as we strive to develop an efficient health care environment.
Children, biobanks and the scope of parental consent
European Journal of Human …, 2011
The use of stored tissue samples from children for genetic research raises specific ethical questions that are not all analogous to those raised when adult participants are concerned. These include issues with regard to consent, as it is typically a parent who consents to the use of samples from children. In this paper, we discuss the scope of parental consent. This scope has a temporal dimension and one related to the content of consent. It is not questioned that the temporal scope of parental consent is limited and that young adults have the right to decide on the fate of their samples when they reach the age of maturity. With regard to the content of consent, the question remains whether parents are allowed to give full broad consent to any possible future research on the samples of their children. We argue that they should not be allowed to do so, based on two premises. First, it is generally acknowledged that children have a right to express their own values and that they should be given the opportunity to develop their own autonomy as they grow older. Second, research and science are not completely value-free and some types of research may be more sensitive than other types. Children should be given the opportunity to express their values also in this respect.
Science in the fight to uphold the rights of children
The United States is the only major nation to not yet have ratified the United Nations Convention on the Rights of the Child (UNCRC). Recently, there has been an erosion of the rights of children across America, Europe, and elsewhere, but through science, we may have an opportunity to counter some of this alarming trend. In the area of vaccines, the scientific community can raise its voice on the dangers that nonmedical exemptions and delays pose to children at risk for measles, influenza, and other childhood illnesses. Poverty places infants and children at high risk for illness and homelessness. Gun violence and gun-related accidents are killing on average four American children daily, and climate change is promoting global pediatric malnutrition. Increasing international, federal, and state support to seek innovative solutions to these and related issues is a moral imperative. Citation: Caplan AL, Hotez PJ (2018) Science in the fight to uphold the rights of children. PLoS Biol 16(9): e3000010.
Review of Legal Instruments and Codes on Medical Experimentation with Children
Cambridge Quarterly of Healthcare Ethics, 1994
Medical research with children has been the subject of ongoing debate. The reason for controversy is clear. As with research on adults, one must strike a balance between two goals – promoting the health of children through advances in scientific knowledge and protecting child research subjects from exploitation and harm. However, because of their age and relative immaturity, children cannot protect their own interests as well as adult subjects can. Yet as they progress toward adulthood, increasing care must be taken to involve children in decisions that affect them, even to the extent of allowing them to make choices that may have serious and long-term consequences.
Prophylactic interventions on children: balancing human rights with public health
Bioethics committees have issued guidelines that medical interventions should be permissible only in cases of clinically verifiable disease, deformity, or injury. Furthermore, once the existence of one or more of these requirements has been proven, the proposed therapeutic procedure must reasonably be expected to result in a net benefit to the patient. As an exception to this rule, some prophylactic interventions might be performed on individuals "in their best interests" or with the aim of averting an urgent and potentially calamitous public health danger. In order to invoke these exceptions, a stringent set of criteria must first be satisfied. Additionally, where the proposed prophylactic intervention is intended for children, who are unlikely to be able to provide a meaningfully informed consent, a heightened scrutiny of any such measures is required. We argue that children should not be subjected to prophylactic interventions "in their best interests" or for public health reasons when there exist effective and conservative alternative interventions, such as behavioural modification, that individuals could employ as competent adolescents or adults to avoid adverse health outcomes. Applying these criteria, we consider the specific examples of prophylactic mastectomy, immunisations, cosmetic ear surgery, and circumcision.