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48The ethics of type 1 diabetes prediction and prevention researchTheoretical Medicine and Bioethics 24 (2): 177-197. 2003.There are approximately one million cases oftype 1 diabetes in the US, and the incidenceis increasing worldwide. Given that two-thirdsof cases present in childhood, it is criticalthat prediction and prevention research involvechildren. In this article, I examine whethercurrent research methodologies conform to theethical guidelines enumerated by the NationalCommission for the Protection of Human Subjectsof Biomedical and Behavioral Research, andadopted into the federal regulations thatprotect re…Read more
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63Responding to the challenge of the children's health act: An introduction to children in researchTheoretical Medicine and Bioethics 24 (2): 101-106. 2003.This overview describes the breadth of topicscovered in this volume devoted to children inresearch. It summarizes how these articles areinterrelated and how they all respond to thechallenge proposed by the Children's Health Actof 2000: to consider what modifications, ifany, are necessary to current regulations ``toensure the adequate and appropriate protectionof children participating in research.''.
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52Justice for children: The child as organ donorBioethics 8 (2). 1994.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 ce…Read more
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62Disclosing misattributed paternityBioethics 10 (2). 1996.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,…Read more
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55The ethical limits in expanding living donor transplantationKennedy Institute of Ethics Journal 16 (2): 151-172. 2006.: 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 cat…Read more
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40Convening a 407 panel for research not otherwise approvable: "Precursors to diabetes in japanese american youth" as a case studyKennedy Institute of Ethics Journal 14 (2): 165-186. 2004.: 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 res…Read more
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63Predictive genetic testing for conditions that present in childhoodKennedy Institute of Ethics Journal 12 (3): 225-244. 2002.: 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 condi…Read more
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3Different Standards Are Not Double Standards: All Elective Surgical Patients Are Not AlikeJournal of Clinical Ethics 23 (2): 118-128. 2012.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, …Read more
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University of RochesterHealth Humanities and Bioethics
Department of PhilosophyDistinguished Professor
Rochester, New York, United States of America
Areas of Specialization
Biomedical Ethics |
Genetic Ethics |
Medical Ethics |
Biomedical Ethics, Miscellaneous |
Applied Ethics |