-
1Medical Decision-Making for Children in Families with Siblings: parental discretion and its limitsPerspectives in Biology and Medicine 67 (2): 261-276. 2024.This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex’s parents must decide whether to conduct sequencing on his siblings to help determine if there is a genetic cause for Alex’s …Read more
-
3Teenage Development and Parental Authority: applying consensus recommendations to adolescent carePerspectives in Biology and Medicine 67 (2): 227-243. 2024.The consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making intentionally omitted adolescents due to the additional complexity their evolving autonomy presented. Using two case studies, one focused on truth-telling and disclosure and one focused on treatment refusal, this article examines medical decision-making with and for adolescents in the context of the six consensus recommendations. It concludes that the consensus recommendations could reasonably apply…Read more
-
3How We Found Consensus on Pediatric Decision-Making and Why It MattersPerspectives in Biology and Medicine 67 (2): 186-196. 2024.This article describes the process engaged by 17 expert scholars in the development of a set of six consensus recommendations about the normative foundations of pediatric decision-making. The process began with a robust pre-reading assignment, followed by three days of in-person symposium discussions that resulted in a publication in _Pediatrics_ entitled “Pediatric Decision-Making: Consensus Recommendations” (Salter et al. 2023). This article next compares the six recommendations to existing st…Read more
-
8Neither Ethical nor Prudent: Why Not to Choose Normothermic Regional PerfusionHastings Center Report. forthcoming.In transplant medicine, the use of normothermic regional perfusion (NRP) in donation after circulatory determination of death raises ethical difficulties. NRP is objectionable because it restores the donor's circulation, thus invalidating a death declaration based on the permanent cessation of circulation. NRP's defenders respond with arguments that are tortuous and factually inaccurate and depend on introducing extraneous concepts into the law. However, results comparable to NRP's—more and high…Read more
-
6Parents Don’t Know Best in the United KingdomAmerican Journal of Bioethics 24 (1): 103-106. 2024.The Case of Archie Battersbee in the United Kingdom (UK) is a tragic one: a 12-year-old otherwise healthy boy who suffered a cardiac arrest at home on April 7, 2022, and was subsequently diagnosed...
-
11Against the Equality of Moral Spheres in HealthcareAmerican Journal of Bioethics 23 (12): 23-25. 2023.In a recent paper, Doernberg and Truog identify that physicians must routinely navigate a set of distinct “moral spheres”—clinical care, research, population health and the market.1 While the conce...
-
1Genetic Testing of Children: Who Should Consent?In Justine Burley & John Harris (eds.), A Companion to Genethics, Blackwell. 2004.The prelims comprise: Introduction: Informed Consent and the Doctor‐Patient Relationship The Role of Children in the Informed Consent Process Newborn Screening: Mandatory Screening versus Informed Consent Testing Young Children for Early‐onset Genetic Conditions Testing Children for Late‐onset Genetic Conditions Testing Children for Carrier Status Conclusion Acknowledgments.
-
7Pediatric Intensivist and Pediatric Neurologist Perspectives and Practices on Death by Neurologic CriteriaJournal of Clinical Ethics 32 (3): 195-205. 2021.Controversies surrounding the determination of death by neurologic criteria (DNC), also known as brain death, have become increasingly common over the last decade, occasionally leading to parental refusal of all or part of an evaluation or declaration of DNC. We performed a prospective, crosssectional study of pediatric neurologists and intensivists who participate in professional listservs to ascertain perspectives and practices concerning the evaluation of DNC, specifically on obtaining permis…Read more
-
3In Further Defense of “Better than Best (Interest)”Journal of Clinical Ethics 30 (3): 232-239. 2019.In their thoughtful critiques of my article “Better than Best (Interest Standard) in Pediatric Decision Making,” my colleagues make clear that there is little consensus on what is (are) the appropriate guidance and intervention principles in pediatric decision making, and disagree about whether one principle can serve both functions. Hester proposes his own unitary principle, the reasonable interest standard, which, like the best interest standard from which it is derived, encourages parents to …Read more
-
15Better than Best (Interest Standard) in Pediatric Decision MakingJournal of Clinical Ethics 30 (3): 183-195. 2019.Healthcare decision making for children has adopted the best interest of the child standard, a principle originally employed by judges to adjudicate child placement in the case of parental death, divorce, or incompetence. Philosophers and medical ethicists have argued whether the best interest principle is a guidance principle (informing parents on how they should make healthcare decisions for their child), an intervention principle (deciding the limits of parental autonomy in healthcare decisio…Read more
-
8The Pediatrician’s Moral Obligation to Counsel Directively Against Youth Tackle FootballJournal of Clinical Ethics 31 (4): 331-337. 2020.In this issue of The Journal of Clinical Ethics, Professor Ruth Tallman argues that pediatricians ought to support adolescent football players in their athletic goals. She does not deny that doing so means “helping children hurt themselves”; rather she argues that this would be consistent with a shared decision-making model in which both the physician and the patient seek to promote the patient’s well-being in light of the patient’s own goals. I argue that this ignores the role of the parents, m…Read more
-
5Abusive Head Trauma and Parental Participation in Pediatric Decision MakingJournal of Clinical Ethics 31 (2): 121-125. 2020.Decision making for children who suffer abusive head trauma invokes multiple ethical considerations. The degree to which parents are permitted to participate in decision making after the injury has occurred is controversial. In particular, in this issue of The Journal of Clinical Ethics, Grigorian and colleagues raise concerns about the potential for conflict of interest in end-of-life decision making if the parents are facing criminal charges that could be escalated if the child dies. There are…Read more
-
5""Why" doctor, if this were your child, what would you do?" deserves an answerJournal of Clinical Ethics 14 (1-2): 59-62. 2003.
-
10The Research Protection-Inclusion Dilemma in Pregnancy: Who is Being Protected? Who is Being Included?American Journal of Bioethics 23 (6): 103-106. 2023.Pregnant people are often listed among groups that have been excluded from research on the basis of perceived vulnerability, to the detriment of the entire class. Lack of research among pregnant pe...
-
58When 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
-
5Moral 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
-
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
-
9Justice for Children: The Child as Organ DonorBioethics 8 (2): 105-126. 1994.I 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 do…Read more
-
17Coding the Dead: Cardiopulmonary Resuscitation for Organ PreservationAJOB Empirical Bioethics 14 (3): 167-173. 2023.Background There is lack of consensus in the bioethics literature regarding the use of cardiopulmonary resuscitation (CPR) for organ-preserving purposes. In this study, we assessed the perspectives of clinicians in critical care settings to better inform donor management policy and practice.Methods An online anonymous survey of members of the Society of Critical Care Medicine that presented various scenarios about CPR for organ preservation.Results The email was sent to 10,340 members. It was op…Read more
-
12The Dead Donor Rule Does Require that the Donor is DeadAmerican Journal of Bioethics 23 (2): 12-14. 2023.Emil Nielsen Busch and Marius Mjaaland (2023) ask whether controlled donation after circulatory death (cDCD) violates the dead donor rule (DDR). They begin their article with the claim, “The dead d...
-
49Addressing 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
-
13Clarifying the Blurry Boundaries between Research and Clinical CareAmerican Journal of Bioethics 22 (10): 96-98. 2022.In the fast-evolving field of genomic medicine, genomic sequencing is still more commonly performed in research contexts. Large amounts of data are routinely generated in research, producing both p...
-
4A festschrift in memory of Robert M. VeatchTheoretical Medicine and Bioethics 43 (4): 177-178. 2022.
-
17The philosopher as partner: an introduction to the scholarship of Robert M. VeatchTheoretical Medicine and Bioethics 43 (4): 179-185. 2022.A diverse group of scholars reflect on the scholarship of Robert M. Veatch, the breadth of which is unmatched in modern day bioethics. Essays were written by both philosophers and clinician-philosophers, by contemporaries and mentees. They span the breadth of Bob’s work and include analyses of his ideas about death, dying and organ transplantation, human experimentation and research ethics, disability, equality and justice, the doctor-patient relationship, the history of bioethics, as well as hi…Read more
-
25Black Women and Babies MatterAmerican Journal of Bioethics 21 (2): 93-95. 2021.Black women and their babies matter. In this commentary, we explore the current challenges that Black women face when pregnant and what is needed to ensure an anti-racist approach to prenatal and p...
-
37Attitudes 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
-
11The Ethical Limits of Children's Participation in Clinical ResearchHastings Center Report 50 (4): 12-13. 2020.This essay reflects on arguments by Paul Ramsey, in The Patient as Person: Explorations in Medical Ethics (1970) and elsewhere, that continue to challenge policy‐makers and those doing clinical and translational research involving children. Ramsey argued that parents cannot morally authorize their child's participation in research unless the research is designed to benefit the child. He acknowledged that abiding by this position could have adverse impacts on improving child health, and he conclu…Read more
-
9Health Care Surrogacy Laws Do Not Adequately Address the Needs of MinorsHastings Center Report 50 (2): 16-18. 2020.A couple and their five‐year‐old daughter are in a car accident. The parents are not expected to survive. The child is transported to a children's hospital, and urgent treatment decisions must be made. Whom should the attending physician approach to make decisions for the child? When such cases arise in, for example, the hospitals where we work, the social worker or chaplain is instructed to use the Illinois Health Care Surrogacy Act as a guidepost to identify a decision‐maker. But in our state …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 |