Ethical issues in pediatric life-threatening illness: dilemmas of consent, assent, and communication

The treatment of life-threatening illnesses in childhood is replete with ethical issues and with clinical issues that have ethical implications. The central issues are those involved with a child's participation in the decision-making process and with communication of information about the illness and treatments to children. This article examines the questions of patient autonomy and of parental responsibility and prerogative in the context of pediatric oncology. Included in this examination of the ethical dimensions of pediatric life-threatening illness is a discussion of the many related aspects involved, including medical, cultural, psychosocial, legal, and developmental. A multidimensional approach that considers the ways in which these multiple aspects interact with one another, and which focuses on establishing a strong working alliance between the health care team and the pediatric patient's family, can help to avoid or resolve potential ethical and clinical conflicts.     

Children's competence for assent and consent: a review of empirical findings

This narrative review summarizes the empirical literature on children's competence for consent and assent in research and treatment settings. Studies varied widely regarding methodology, particularly in the areas of participant sampling, situational context studied (e.g., psychological versus medical settings), procedures used (e.g., lab-based vs. real-world approaches), and measurement of competence. This review also identifies several fundamental dilemmas underlying approaches to children's informed consent. These dilemmas, including autonomy versus best interest approaches, legal versus psychological or ethical approaches, child- versus family-based approaches, and approaches that emphasize consent versus those that emphasize assent, have implications for the measurement of children's competence and interpretation of findings. Recommendations for future research in the area of children's informed consent include the use of diverse samples and control groups, development of multidimensional and standardized measures of competence, utilization of multidimensional and standardized measures of competence, utilization of observational methods and longitudinal designs, examination of noncognitive aspects of children's competence and comparison of children's competence for treatment and research decisions.     

Women in labor: some issues about informed consent

Women wishing hospital admission for childbirth are asked to sign very general pre-admission consent forms. The use of such forms suggests that women in labor are considered incompetent to give informed consent. This paper explores some of the problems with advance directives and general consent, and argues that since women in labor are not generally incompetent, it is not appropriate to require this kind of consent of them.     

Legal and ethical issues involved when counseling minors in nonschool settings

Many counselors in non-school settings will work with children at some time during their practice; therefore, it is essential that they understand the legal and ethical issues relevant to working with minors. Major court cases and legislation are presented, and 4 critical ethical issues--counselor competence, the client's rights to confidentiality and informed consent, and duties related to child abuse--are addressed. Suggestions for working ethically with minors in order to limit legal liability are presented.     

Interspecies justice: agency,self-determination,and assent

Philosophical Studies - In this article, we develop and defend an account of the normative significance of nonhuman animal agency. In particular, we examine how animals’ agency interests...     

Some ethical and legal issues in Germany involving informed consent and patenting

This paper elaborates on discussions in Germany regarding some of the ethical and legal issues in the area of the use and patenting of inventions involving human tissue. The issues discussed pertain to the benefits and problems regarding informed consent and the issue of property rights as they relate to the donation of cells and tissue. An earlier version of this paper was presented at an international conference, “The Ethics of Intellectual Property Rights and Patents,” held in Warsaw, Poland on 23–24 April, 2004.     

Toward a further understanding of assent

Arranging assent opportunities is an increasingly common strategy for involving clients in therapeutic decisions within behavior analysis. Recent behavior-analytic articles have helped create a basic behavioral definition and conceptualization of assent, but much more guidance is needed for practitioners and researchers interested in embedding assent into their practices. The purpose of this article is to advance the conceptualization and understanding of assent and assent practices by refining previous definitions and conceptualizations of assent and providing six essential considerations for embedding assent into practice. The six considerations consist of determining the applicability and feasibility of assent, assessing assent-related skills, arranging assent procedures and teaching assent-related skills, arranging fair choices, selecting opportunities to assess assent, and informally assessing assent. Following the discussion of the considerations for assent practices, we issue a call for specific topics of research on assent.     

On the ethical analysis of value issues in public decision-making

Abstract

The nature, methodology, importance and implications of an ethical analysis of value issues pertaining to public decision-making is not evident. In this paper I would like to address these issues by posing the following questions:

• Why is it important to focus on values in any process of public decision-making?

• What is the nature of an ethical analysis of the value issues involved?

• What is the basis, if any, for ethical analysis that moves beyond relativism and subjectivity?

• What difference can such an ethical analysis make to public decision-making?

During the course of discussing these issues, the question “What is ethics?” will be addressed in passing, as well as the usual objections against ethics and the consideration of value issues in public decision-making, namely that

• values cannot be analysed and discussed objectively

• values and ethics are relative to people and cultures

• value and ethical questions cannot be settled in a rational manner

• ethics cannot provide answers

• arguments about value and ethical issues move in circles, taking us nowhere

• values and ethics are so intertwined with emotions and biases that one cannot take them seriously in any process of public decision-making.

     

Methodological issues in judgment and decision-making research: Concurrent verbal protocol validity and simultaneous traces of process

This paper examines two dimensions of concurrent verbal protocol validity. First, whether verbalization affects process and outcome (reactivity) was examined by comparing concurrent verbal protocol traces with those from a computer search process tracing method, the latter being a complete trace of information acquisition from experimental materials. Earlier findings that verbalization affects time were confirmed. However, verbalization did not affect amount and pattern of acquisition or accuracy of judgments. Second, whether concurrent verbal protocols are complete was examined by comparing concurrent verbal protocol and computer traces that were simultaneously obtained in a treatment in which subjects verbalized as they acquired information from the computer. The verbal traces less completely captured information acquisition behavior than computer search. This suggests that, although concurrent verbal protocols provide greater insight into decision behavior than computer search, the latter is a more reliable information-acquisition trace. Thus, if information acquisition is of primary interest and if computer search activities can be naturally integrated into performing the primary task, computer search is preferred to concurrent verbal protocols. However, if information use or retrieval from long-term memory is of primary interest, concurrent verbal protocols are preferred to computer search. Finally, this paper examined whether the simultaneous use of concurrent verbal protocols and computer search provides traces of information acquisition and use that are as complete as when each method is independently applied. Although computer search tended to limit subjects verbalizations of evaluative operators, this effect may be eliminated by practice on the computer prior to collecting data.     

Conflict of interest issues in informed consent for research on human subjects: a South Asian perspective

Health research for progress in the control and conquest of disease afflicting man is unquestionable. Concerns arise when motives other than the advancement of scientific knowledge and benefit for individuals and society are the driving force behind clinical trials. These conflicts of interests become even more pronounced when dealing with populations rendered vulnerable by virtue of poverty and ignorance. South Asia with its teeming millions represents one such region. This essay examines the reasons that make this population vulnerable to exploitation. Informed consent in the process of research is an area where such conflicts are prone to arise. In order to ensure that conflicting interests of researchers and funding agencies are kept in check, the processes of informed consent and ethical review of research need to be strengthened. Suggestions are put forward to modify the consent process to match the needs of South Asia and to strengthen the ethical review process for safeguarding the rights of the study subjects. But perhaps the most important safeguard against exploitation is the virtuous researcher himself with noble intentions. An earlier version of this paper was presented at an International Conference on “Conflict of Interest and its Significance in Science and Medicine” held in Warsaw, Poland on 5–6 April, 2002.