The first principle of the Nuremberg Code requires the informed consent of the subject. Proxy consent was not addressed until the Declaration of Helsinki. U.S. policies regarding consent for the participation of children in research would not be finalized for almost two more decades in subpart D of the federal regulations that govern the participation of subjects in research. In October 2000, the Children's Health Act was passed. Title X required the Secretary of the Department of Health and Human Services (...) to conduct a review of the regulations under subpart D and “to consider any modifications necessary to ensure the adequate and appropriate protection of children participating in research, and report the findings of the Secretary to Congress.” In this article, I provide a brief overview of the current informed consent requirements in pediatric research, which include requirements for parental permission and the child's assent. I then examine the moral bases for these requirements; whether the current policies are consistent with these moral foundations; and if not, how the policies ought to be modified. a. (shrink)

Children are young human beings. Some children are very young human beings. As human beings children evidently have a certain moral status. There are things that should not be done to them for the simple reason that they are human. At the same time children are different from adult human beings and it seems reasonable to think that there are things children may not do that adults are permitted to do. In the majority of jurisdictions, for instance, children are not (...) allowed to vote, to marry, to buy alcohol, to have sex, or to engage in paid employment. What makes children a special case for philosophical consideration is this combination of their humanity and their youth, or, more exactly, what is thought to be associated with their youth. One very obvious way in which the question of what children are entitled to do or to be or to have is raised is by asking, Do children have rights? If so, do they have all the rights that adults have and do they have rights that adults do not have? If they do not have rights how do we ensure that they are treated in the morally right way? Most jurisdictions accord children legal rights. Most countries—though not the United States of America—have ratified the United Nations Convention on the Rights of the Child which was first adopted in 1989. The Convention accords to children a wide range of rights including, most centrally, the right to have their ‘best interests’ be ‘a primary consideration’ in all actions concerning them, the ‘inherent right to life’, and the right of a child “who is capable of forming his or her own views … to express these views freely in all matters affecting the child”. However it is normal to distinguish between ‘positive’ rights, those that are recognised in law, and ‘moral’ rights, those that are recognised by some moral. (shrink)

This book is the most comprehensive treatment available of one of the most urgent - and yet in some respects most neglected - problems in bioethics: decision-making for incompetents. Part I develops a general theory for making treatment and care decisions for patients who are not competent to decide for themselves. It provides an in-depth analysis of competence, articulates and defends a coherent set of principles to specify suitable surrogate decisionmakers and to guide their choices, examines the value of advance (...) directives, and investigates the role that considerations of cost ought to play in decisions concerning incompetents. Part II applies this theoretical framework to the distinctive problems of three important classes of individuals, many of whom are incompetent: minors, the elderly and psychiatric patients. The authors' approach combines a probing analysis of fundamental issues in ethical theory with a sensitive awareness of the concrete realities of health care institutions and the highly personal and individual character of difficult practical problems. Its broad scope will appeal to health professionals, moral philosophers and lawyers alike. (shrink)

The argument for children's rights in health care has been long in the making. The success of this position is reflected in the 1995 American Academy of Pediatrics recommendations for the role of children in health care decisionmaking, which suggest that children be given greater voice as they mature. But there are good moral and practical reasons for exercising caution in these health care situations, especially when the child and parents disagree. Parents need the moral and legal space within which (...) to make decisions that will facilitate their child's long‐term autonomy, not only her present‐day autonomy. Moreover, third‐party intrusion, by physicians or the state, should be resisted unless negligent and abusive decisions are in the making. (shrink)

As a study involving diabetes care demonstrates, children sometimes have a much more sophisticated capacity for taking charge of their own health care decisions than is usually recognized in bioethics. Protecting these children from their disease means involving them in their treatment as much as possible, helping them to understand it and take responsibility for it so that they can navigate the multitude of daily decisions that become part of the diabetes medical regimen.

The importance of protecting and empowering children -- The law and children's autonomy -- Parental responsibility and children's medical treatment -- Confidentiality and children -- Genetic testing and counselling : the paradigm case for family medicine? -- Negligence and complaints -- Children in research -- Children's participation and foundation trust : some new opportunities?

This CQ department is dedicated to bringing noted bioethicsts together in order to debate some of the most perplexing contemporary bioethics issues. You are encouraged to contact department editor, D. Micah Hester, UAMS/Humanities, 4301 W. Markham St. #646, Little Rock, AR 72205, with any suggestions for debate topics and interlocutors you would like to see published herein.