A critical examination of Richard Miller's position in his recent "Children, Ethics, and Modern Medicine" on how to handle pediatric interventions in cases of cross-cultural conflict between parents and doctors with respect to treating young children. Particular emphasis is placed on Miller's interpretation of and arguments about a Hmong case extensively researched by Anne Fadiman in her "The Spirit Catches You and You Fall Down". The conclusion drawn is that Miller's position requires further nuance and development, and some recommendations are (...) made toward that end. (shrink)

A growing number of bioethics papers endorse the harm threshold when judging whether to override parental decisions. Among other claims, these papers argue that the harm threshold is easily understood by lay and professional audiences and correctly conforms to societal expectations of parents in regard to their children. English law contains a harm threshold which mediates the use of the best interests test in cases where a child may be removed from her parents. Using Diekema9s seminal paper as an example, (...) this paper explores the proposed workings of the harm threshold. I use examples from the practical use of the harm threshold in English law to argue that the harm threshold is an inadequate answer to the indeterminacy of the best interests test. I detail two criticisms: First, the harm standard has evaluative overtones and judges are loath to employ it where parental behaviour is misguided but they wish to treat parents sympathetically. Thus, by focusing only on ‘substandard’ parenting, harm is problematic where the parental attempts to benefit their child are misguided or wrong, such as in disputes about withdrawal of medical treatment. Second, when harm is used in genuine dilemmas, court judgments offer different answers to similar cases. This level of indeterminacy suggests that, in practice, the operation of the harm threshold would be indistinguishable from best interests. Since indeterminacy appears to be the greatest problem in elucidating what is best, bioethicists should concentrate on discovering the values that inform best interests. (shrink)

This essay is a critical engagement with recent assessments of comparative religious ethics by John Kelsay and Jung Lee. Contra Kelsay's proposal to return to a neo-Weberian sociology of religious norm elaboration and justification, the authors argue that comparative religious ethics is and should be practiced as a field of study in active conversation with other fields that consider human flourishing, employing a variety of methods that have their roots in multiple disciplines. Cross-pollination from a variety of disciplines is a (...) strength of comparative ethics, which has enlivened recent and ongoing research on ethics, not a problem to be resolved by convergence on a single, distinctively comparative project. The authors also argue in response to Lee and Kelsay that while individual comparative studies of virtue and personal formation can be flawed in various ways, this line of research has been productive and at times very compelling. Moreover, attention to comparative virtue ethics shows how scholarship on some ethical topics necessitates drawing on a variety of perspectives and disciplinary backgrounds, a conclusion relevant to all work in religious ethics today. (shrink)

In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child’s best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. With reference (...) to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child’s interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances. (shrink)

This paper deals with ethical issues of particular relevance to longitudinal research involving children. First some general problems concerning information and lack of understanding are discussed. Thereafter focus is shifted to issues concerning information and consent procedures in studies that include young children growing up to become autonomous persons while the project still runs. Some of the questions raised are: When is it right to include children in longitudinal studies? Is an approval from the child needed? How should information to (...) children be handled? A general point stressed is that autonomy considerations underline the importance of adjusting the information given to meet demands. A “presumption of competence” may be needed in research involving children, in order to pay their views sufficient attention. (shrink)

Ethics education is recognized as an integral component of health professionals’ education and has been occurring in various guises in the curricula of health professional training in many countries since at least the 1970s. However, there are a number of different aims and approaches adopted by individual educators, programs, and, importantly, different health professions that may be characterized according to strands or trends in ethics education.

There is an increased focus on, and evidence of, children's capability to both understand and make decisions about issues relating to participation in medical research. At the same time there are divergent ideas of when, how and to what extent children should be allowed to decide for themselves. Furthermore, little is known about parents' views on these matters, an important issue since they often provide the formal consent. In this questionnaire study of 2500 families in south-east Sweden (with and without (...) research experience) we explored parents' views on issues relating to information, consent and research data. We found that parents are generally positive about supplying their child with individual information (93.3%; median age 7) and assuring the child's consent/assent to participation (74.3%; median age 12). However, parents' views vary regarding the extent to which children should influence research data: as many as 47–61% of our sample were opposed to children's rights to decide about the use and storage of biological samples and natural history data. Parents who are opposed to child consent and a wider influence on their research participation argue that parental authority and research quality are two important factors opposing enhanced child influence. Drawing on this, we underline the need to discuss how to balance children's rights against parental autonomy and research interests before implementing any standardized protocols granting children the right to consent and revoke data in long-term research. (shrink)

Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent''s refusal to provide consent for a child''s medical care. In this paper, I will argue that the (...) best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent''s decision to refuse medical care on behalf of a child. (shrink)

This review both praises Richard Miller's book--a thoughtful, judicious, and comprehensive analysis of bioethics for the pediatric age group, notably the first effort worthy of the name--and points out the work still to be done in this area, work firmly based in and illuminated by Miller's ground-breaking thesis. Specifically, the book rightly compels us to recognize obligations of beneficence as primary and to refocus on the child's basic interests, rather than putative "best" interests. There remains much to be done in (...) defining and discerning basic interests and in distinguishing whose interests are on the table when decisions are being made for seriously ill and dying children. (shrink)

ABSTRACT In this essay, Paul Lauritzen examines Richard B. Miller's liberal account of pediatric ethics by asking if the duty to promote a child's basic interests is substantial enough to secure the well‐being of children. This question is raised in light of two case studies: daytime TV talk shows that broadcast interviews with sexually active children, and a medical study conducted to test the effect of growth hormone treatment on adult height in peripubertal children. In both cases, Lauritzen argues, children (...) are subjected to potential harms that are not easily explained, and therefore not easily prevented, by appeals to basic interests. (shrink)

This essay critically explores resources and reasons for the study of culture in religious ethics, paying special attention to rhetorics and genres that provide an ethics of ordinary life. I begin by exploring a work in cultural anthropology that poses important questions for comparative and cultural inquiry in an age alert to "otherness," asymmetries of power, the end of value-neutrality in the humanities, and the formation of identity. I deepen my argument by making a foundational case for the importance of (...) culture as a topic of normative analysis through a discussion of the emotions as cultural artifacts. To illustrate how cultural analysis can inform religious ethics, I turn to works by Wayne Meeks, Margaret Trawick, and Charles Taylor. I conclude by sketching some implications of a "cultural turn" for future work in religious ethics. (shrink)

This paper reviews the ethical literature on conflicts between health professionals and parents about medical decision-making for children. We present the results of a systematic review which addressed the question ‘when health professionals and parents disagree about the appropriate course of medical treatment for a child, under what circumstances is the health professional ethically justified in overriding the parents’ wishes?’ We identified nine different ethical frameworks that were put forward by their authors as applicable across various ages and clinical scenarios. (...) Each of these frameworks centred on a different key moral concept including harm, constrained parental autonomy, best interests, medically reasonable alternatives, responsible thinking and rationality. (shrink)

There is an increased focus on, and evidence of, children's capability to both understand and make decisions about issues relating to participation in medical research. At the same time there are divergent ideas of when, how and to what extent children should be allowed to decide for themselves. Furthermore, little is known about parents' views on these matters, an important issue since they often provide the formal consent. In this questionnaire study of 2500 families in south-east Sweden we explored parents' (...) views on issues relating to information, consent and research data. We found that parents are generally positive about supplying their child with individual information and assuring the child's consent/assent to participation. However, parents' views vary regarding the extent to which children should influence research data: as many as 47–61% of our sample were opposed to children's rights to decide about the use and storage of biological samples and natural history data. Parents who are opposed to child consent and a wider influence on their research participation argue that parental authority and research quality are two important factors opposing enhanced child influence. Drawing on this, we underline the need to discuss how to balance children's rights against parental autonomy and research interests before implementing any standardized protocols granting children the right to consent and revoke data in long-term research. (shrink)

Margaret Mohrmann, Paul Lauritzen, and Sumner Twiss raise questions about my account of basic interests, liberal theory, and the challenges of multiculturalism as developed in "Children, Ethics, and Modern Medicine." Their questions point to foundational issues regarding the justification and limitation of parental authority to make decisions on behalf of children in medical and other contexts. One of the central questions in that regard is whether adults' decisions deserve to be respected, especially when they seem contrary to a child's or (...) adolescent's basic interests. Questions about respect, in turn, focus attention on others' decisions about what seems good for families and children, decisions that may be paternalistic or utilitarian. Such decisions are further complicated by a child's or adolescent's budding autonomy and need for respect and recognition. Pediatric bioethics grounded in an account of a child's basic interests produces a theory of negative and positive rights for assessing adults' actions in relation to children, especially (but not only) when adults demand respect in their expressions of care. (shrink)

In this essay, Paul Lauritzen examines Richard B. Miller's liberal account of pediatric ethics by asking if the duty to promote a child's basic interests is substantial enough to secure the well-being of children. This question is raised in light of two case studies: daytime TV talk shows that broadcast interviews with sexually active children, and a medical study conducted to test the effect of growth hormone treatment on adult height in peripubertal children. In both cases, Lauritzen argues, children are (...) subjected to potential harms that are not easily explained, and therefore not easily prevented, by appeals to basic interests. (shrink)