Lainie Ross

ABSTRACTI argue that parents ought to be allowed to authorize their child's participation as an organ donor for another family member. I introduce a model of decisionmaking for children in intimate families which I call Constrained Parental Autonomy. This model permits wide parental discretion which is constrained absolutely by a broadly defined principle of respect for persons. In general, parental authorization alone is sufficient but I argue that the respect for persons constraint prevents certain donations and requires the child's assent for other donations. I also consider two controversial implications of the application of this model: the objection that the model does not respect the child's right to bodily integrity, and the objection that the model does not and is unable to address intrafamilial disgreement

ABSTRACTIn 1994, the Committee on Assessing Genetic Risks of the Institute of Medicine published their recommendations regarding the ethical issues raised by advances in genetics. One of the Committee's recommendation was to inform women when test results revealed misattributed paternity, but not to disclose this information to the women's partners. The Committee's reason for withholding such information was that “'genetic testing should not be used in ways that disrupt families”. In this paper, I argue that the Committee's conclusion in favour of nondisclosure to the male partner is unethical. I argue that both parties ought to be informed

: The past decade has witnessed the emergence of novel methods to increase the number of living donors. Although such programs are not likely to yield high volumes of organs, some transplant centers have gone to great lengths to establish one or more of them. I discuss some of the ethical and policy issues raised by five such programs: (1) living-paired and cascade exchanges; (2) unbalanced living-paired exchanges; (3) list-paired exchanges; (4) nondirected donors; and (5) nondirected donors catalyzing cascade exchanges. I argue that living-paired and cascade exchanges are ethically sound, but will lead to only a few additional transplants. Unbalanced exchanges and list-paired exchanges raise ethical issues that should limit their permissibility. Nondirected donations can be ethically sound with adherence to strict eligibility criteria and fair allocation procedures. Nondirected donors catalyzing cascade exchanges can be ethically sound provided that individuals with blood types O and B are not made worse off

: Subpart D of 45 CFR 46 focuses on research involving children. Section 46.407 addresses research that is not otherwise approvable. The research is not otherwise approvable because either (1) it seeks to enroll healthy children, but offers no prospect of direct benefit and entails more than minimal risk; or (2) it seeks to enroll children with a disorder or condition, but offers no prospect of direct benefit and entails more than a minor increase over minimal risk. According to 46.407, such research can be permissible if it is approved by a panel of experts. Prior to 2000, only two 407 panels had been convened, but in 2001, the Office for Human Research Protections received more than 20 protocols for 407 review. The first, entitled "Precursors to Diabetes in Japanese American Youth," serves here as a case study in human subject protections

: There is a general consensus in the medical and medical ethics communities against predictive genetic testing of children for late onset conditions, but minimal consideration is given to predictive testing of asymptomatic children for disorders that present later in childhood when presymptomatic treatment cannot influence the course of the disease. In this paper, I examine the question of whether it is ethical to perform predictive testing and screening of newborns and young children for conditions that present later in childhood. I consider the risks and benefits of (1) predictive testing of children from high-risk families; (2) predictive population screening for conditions that are untreatable; and (3) predictive population screening for conditions in which the efficacy of presymptomatic treatment is equivocal. I conclude in favor of parental discretion for predictive genetic testing, but against state-sponsored predictive screening for conditions that do not fulfill public health screening criteria

Testa and colleagues argue that evaluation for suitability for living donor surgery is rooted in paternalism in contrast with the evaluation for most operative interventions which is rooted in the autonomy of patients. We examine two key ethical concepts that Testa and colleagues use: paternalism and autonomy, and two related ethical concepts, moral agency and shared decision making. We show that moving the conversation from paternalism, negative autonomy and informed consent to moral agency, relational autonomy and shared decision making, one better understands why the arguments give by Testa and colleagues fail.