-
542Mandatory versus voluntary consent for newborn screening?Kennedy Institute of Ethics Journal 20 (4): 299-328. 2010.Virtually every infant in the United States (U.S.) undergoes a heel stick within the first week of life to test for a variety of metabolic, endocrine, and hematological conditions as part of state-run universal newborn screening (NBS) programs. In the U.S., NBS began in the 1960s for phenylketonuria (PKU), a metabolic condition that causes intellectual disability if left untreated. I review the history of how NBS came to be a mandatory public health program that did not require parental consent1…Read more
-
97Newborn Screening for Krabbe Disease: What Illinois Can Learn from New YorkPublic Health Ethics 6 (1): 119-123. 2013.
-
83Children in Medical Research: Access versus ProtectionOxford University Press. 2006.This book examines the ethical issues in pediatric medical research. It argues that policies and practices on the participation of children must focus primarily on minimizing risks. It offers specific recommendations to revise Subpart D of the federal regulations to provide greater protection where necessary and remove obstacles that do not provide additional protection but interfere with access. The book is divided into four sections. Section 1 focuses on the issue of access versus protection i…Read more
-
78The moral status of the newborn and its implications for medical decision makingTheoretical Medicine and Bioethics 28 (5): 349-355. 2007.
-
74Against the Tide: Arguments against Respecting a Minor's Refusal of Efficacious Life-Saving TreatmentCambridge Quarterly of Healthcare Ethics 18 (3): 302. 2009.
-
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.''.
-
61Disclosing 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
-
60Predictive 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
-
58Patient Confidentiality and the Surrogate's Right to KnowJournal of Law, Medicine and Ethics 28 (2): 137-143. 2000.Physicians treating newly incapacitated patients often must navigate surrogate decision-makers through a difficult course of treatment decisions. Such a process can be complex. Physicians must not only explain the medical facts and prognosis to the surrogate, but also attempt to ensure that the surrogate arrives at decisions that are consistent with the patient's own values and wishes. Where these values and wishes are unknown, physicians must help surrogates make decisions that reflect the pati…Read more
-
57Response to “Intrafamilial Organ Donation Is Often an Altruistic Act” by Aaron Spital and “Donor Benefit Is the Key to Justified Living Organ Donation,” by Aaron Spital : Motivation, Risk, and Benefit in Living Organ Donation: A Reply to Aaron Spital (review)Cambridge Quarterly of Healthcare Ethics 14 (2): 191-194. 2005.In a recent article in this journal, we argued that living organ donation from a parent to a child should be described as a beneficent rather than an altruistic act. Emotional relationships can generate an obligation of beneficence to help those with whom we have these relationships. This may involve an obligation for a parent to donate an organ to a child, even though it entails some risk to the parent. The parent's donation is not altruistic because altruistic acts are not obligatory but optio…Read more
-
57Do Genetic Relationships Create Moral Obligations in Organ Transplantation?Cambridge Quarterly of Healthcare Ethics 11 (2): 153-159. 2002.In 1999, a case was described on national television in which a woman had enlisted onto an international bone marrow registry with the altruistic desire to offer her bone marrow to some unidentified individual in need of a transplant. The potential donor then was notified that she was a compatible match with someone dying from leukemia and gladly donated her marrow, which cured the recipient of the disease. Years later, though, the recipient developed end-stage renal disease, a consequence of th…Read more
-
57When physicians forego the doctor-patient relationship, should they elect to self-prescribe or curbside? An empirical and ethical analysisJournal of Medical Ethics 36 (1): 19-23. 2010.Background: The American Medical Association, the British Medical Association and the Canadian Medical Association have guidelines that specifically discourage physicians from self-prescribing or prescribing to family members, but only the BMA addresses informal prescription requests between colleagues. Objective: To examine the practices of paediatric providers regarding self-prescribing, curbsiding colleagues, and prescribing and refusing to prescribe to friends and family. Methods: 1086 paedi…Read more
-
57Relational Autonomy as the Key to Effective Behavioral ChangePhilosophy, Psychiatry, and Psychology 20 (2): 169-177. 2013.The Common Health problems that plague Americans today are often the result of people’s choices and behaviors: obesity, cigarette smoking, accidental pediatric head trauma owing to failure to properly restrain children, and failure to adhere to medication regimens. For each problem, there is a well-studied effective behavioral intervention: a healthy diet and exercise for obesity, smoking cessation programs to overcome cigarette addiction, appropriate car restraints to prevent accidental head tr…Read more
-
54The 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
-
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
-
52Forty Years Later: The Scope of Bioethics RevisitedPerspectives in Biology and Medicine 53 (3): 452-457. 2010.Van Rensselaer Potter was an American biochemist who worked in the McArdle Laboratory for Cancer Research at the University of Wisconsin at Madison. In 1970, in an article in this journal, Potter coined the term bioethics to combine a new discipline that combines biological knowledge with ethics. Potter wrote, “Ethical values cannot be separated from biological facts” (p. 127). His conception was broad-ranging: “We are in great need of a land ethic, a wild-life ethic, a population ethic, a consu…Read more
-
48Arguments against Respecting a Minor's Refusal of Efficacious Life-Saving Treatment Redux, Part IICambridge Quarterly of Healthcare Ethics 18 (4): 432. 2009.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
-
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
-
46Addressing the Ethical Challenges in Genetic Testing and Sequencing of ChildrenAmerican Journal of Bioethics 14 (3): 3-9. 2014.American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision m…Read more
-
42Religious Exemptions to the Immunization Statutes: Balancing Public Health and Religious FreedomJournal of Law, Medicine and Ethics 25 (2-3): 202-209. 1997.In February 1997, the Committee on Bioethics of the American Academy of Pediatrics updated its position on religious exemptions to medical care. In its earlier statement, the committee noted that forty-four states have religious exemptions to the child abuse and neglect statutes, and they argued for the repeal of these exemptions. The committee did not indude in its statement a position on religious exemptions to childhood immunization requirements that exist in forty-eight states, although this…Read more
-
41Predictive Genetic Testing of Children and the Role of the Best Interest Standard: Currents in Contemporary BioethicsJournal of Law, Medicine and Ethics 41 (4): 899-906. 2013.The “best interest standard” is the guidance principle for pediatric healthcare in the United States (US) and the United Kingdom (UK). In the UK, the best interest standard may also be used as an intervention principle when parents make good but non-ideal decisions whereas intervention in the US requires a determination of abuse or neglect. I examine whether and how the different uses of the best interest standard influence predictive genetic testing of children
-
40Informed Consent in Pediatric ResearchCambridge Quarterly of Healthcare Ethics 13 (4): 346-358. 2004.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 Hum…Read more
-
39Convening 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
-
38The Best Interest Standard: Same Name but Different Roles in Pediatric Bioethics and Child Rights FrameworksPerspectives in Biology and Medicine 60 (2): 186-197. 2017.The "best interest of the child" standard is central to both pediatric bioethics and the child rights community. In pediatric bioethics in the United States, the best interest of the child standard is cited as the guidance principle for parental decision-making.1 Likewise, in the child rights community, the best interest of the child standard is "of paramount consideration" ). Both approaches also recognize parental rights and responsibilities and support a role for the maturing child in the dec…Read more
-
36Attitudes of African-American parents about biobank participation and return of results for themselves and their childrenJournal of Medical Ethics 38 (9): 561-566. 2012.Introduction Biobank-based research is growing in importance. A major controversy exists about the return of aggregate and individual research results. Methods The authors used a mixed-method approach in order to study parents' attitudes towards the return of research results regarding themselves and their children. Participants attended four 2-h, deliberative-engagement sessions held on two consecutive Saturdays. Each session consisted of an educational presentation followed by focus-group disc…Read more
-
33The Challenges of Incorporating Research Ethics Consultation Into Institutional Human Subjects Protections ProgramsAmerican Journal of Bioethics 18 (1): 49-51. 2018.
-
31Moral Grounding for the Participation of Children as Organ DonorsJournal of Law, Medicine and Ethics 21 (2): 251-257. 1993.More than 24,000 patients await organ transplants and the number is increasing yearly. Living donors are an important source of transplant organs. In this paper, I argue that we can morally justify allowing children to serve as donors. Yet, I also argue that their participation must be restricted in order to prevent their exploitation.The paper is divided into six sections. In the first section, I show why the traditional principles of personal autonomy and beneficence are not adequate morally t…Read more
-
29Lethal Language, Lethal DecisionsHastings Center Report 33 (2): 37-41. 2003.Although many of the congenital syndromes that used to be lethal no longer are, they are still routinely referred to as “lethal anomalies.” But the label is not only inaccurate, it is also dangerous: by portraying as a medical determination what is in fact a judgment about the child's quality of life, it wrests from the parents a decision that only the parents can make.
-
28Theory and Practice of Pediatric BioethicsPerspectives in Biology and Medicine 58 (3): 267-280. 2015.The fundamental principle of modern-day bioethics is that “the competent adult has the right to accept or refuse all medical care, including life-saving medical care,” a principle that has been upheld by the U.S. Supreme Court in Bouvia v. Superior Court ) and Cruzan v. Director, Missouri Department of Health ). If the adult lacks decision-making capacity, a surrogate can speak on his or her behalf. The adult may have chosen his or her surrogate through an advance directive; if not, laws assign …Read more
-
26Respecting Choice in Definitions of DeathHastings Center Report 48 (S4): 53-55. 2018.The definition of death was clearer one hundred years ago than it is today. People were declared dead if diagnosed with permanent cessation of both cardio‐circulatory function and respiratory function. But the definition has been muddled by the development of new technologies and interventions—first by cardiopulmonary resuscitation and ventilators, which were introduced in the mid‐twentieth century, and now by extracorporeal membrane oxygenation, which creates the ability to keep oxygenated bloo…Read more
-
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 |