Both living donor transplantation and human subjects research expose one set of individuals to clinical risks for the clinical benefits of others. In the Belmont Report, the National Commission for the Protection of Human Subjects of Biomedical and Behavior Research articulated three principles to serve as the basis for a research ethics framework: respect for persons, beneficence and justice. In contrast, living donor transplantation lacks a framework. In this manuscript, we adapt the three principles articulated in the Belmont Report to (...) serve as the foundation for an ethics framework for living donor transplantation which we supplement with the principles of vulnerability and responsibility. The National Commission supported additional protections for vulnerable groups of potential research participants. In 2001, Kenneth Kipnis effectively argued that the concept of vulnerable groups failed to explore in what ways particular groups of people were vulnerable, thereby risking unnecessary protections for some and inadequate protections for others. He proposed a taxonomy that explored different types of vulnerabilities that all research participants may experience to provide a more robust framework for human subjects protections, which we adapt to living donors. Robert Goodin claims that health professionals, who stand in special relationship with patients, are responsible for promoting and protecting their well-being. In living donor transplantation, the donor transplant team is responsible for empowering prospective donors to address their vulnerabilities and/or for protecting those who cannot by disqualifying them from donation. (shrink)

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...

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 opened by 5,416 (52%) of members and 405 members (...) (4%) completed the survey with few missing data. A majority of respondents (81%) answered that donation status should not influence whether CPR is performed on an imminently dying patient. There was very strong agreement (>85%) that 1) CPR should be performed on a registered donor who experiences a cardiac arrest with an unknown code status before death by neurological criteria (DNC) and 2) CPR should be performed if the patient is not a registered donor and experiences cardiac arrest but the surrogate/power of attorney (POA) has not yet been approached regarding code status and donation. When a registered donor with a DNR order experiences cardiac arrest before DNC, 98% of respondents would not perform CPR. However, after DNC, respondents were evenly divided on whether they would (49%) or would not (51%) perform CPR on a registered donor with an undocumented code status. When asked whether consent should be required for CPR for organ-preserving purposes, 39% answered “Yes” when a patient arrests before DNC and 48% answered “Yes” when a patient arrests after DNC (P = 0.2).Conclusions The majority of respondents did not consider donor status relevant to CPR decisions before DNC, and virtually all would respect a DNR order in a registered donor before DNC. Respondents were divided about the need for an affirmative consent for CPR for organ-preserving purposes both before and after DNC. (shrink)

Xenotransplantation, or the use of animal cells, tissues and organs for humans, has been promoted as an important solution to the worldwide shortage of organs. While scientific studies continue to be done to address problems of rejection and the possibility of animal-to-human virus transfer, socio-ethical and legal questions have also been raised around informed consent, life-long monitoring, animal welfare and animal rights, and appropriate regulatory practices. Many calls have also been made to consult publics before policy decisions are made. This (...) paper describes the Canadian public consultation process on xenotransplantation carried out by the Canadian Public Health Association in an arm’s length process from Health Canada, the ministry overseeing government health policy and regulation. Focusing on six citizen fora conducted around the country patterned after the citizen jury deliberative approach, the paper describes the citizen panelists’ recommendations to hold off on proceeding with clinical trials and the rationales behind this recommendation. The consultation process is discussed in the context of constructive technology assessment, a framework which argues for broader input into earlier stages of technology innovation, particularly at the technology design stage. (shrink)

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 Human Services (...) to conduct a review of the regulations under subpart D and “to consider any modifications necessary to ensure the adequate and appropriate protection of children participating in research, and report the findings of the Secretary to Congress.” In this article, I provide a brief overview of the current informed consent requirements in pediatric research, which include requirements for parental permission and the child's assent. I then examine the moral bases for these requirements; whether the current policies are consistent with these moral foundations; and if not, how the policies ought to be modified. a. (shrink)

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.

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 the (...) high-dose chemotherapy she received earlier to destroy her stem cells and prepare her for the bone marrow transplant. Finding a suitable donor for a kidney transplant proved extremely difficult. Desperate, she requested that the donor registry personnel help her locate the individual who earlier was determined to be a compatible donor and asked this now-identifiable individual to consider donating one of her two normally functioning kidneys for a kidney transplant. (shrink)

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.

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 (...) developmental disabilities. Second, Alex’s parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex’s parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child. (shrink)

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 to older children.

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...

Mitochondrial genomes represent relict bacterial genomes derived from a progenitor α‐proteobacterium that gave rise to all mitochondria through an ancient endosymbiosis. Evolution has massively reduced these genomes, yet despite relative simplicity their organization and expression has developed considerable novelty throughout eukaryotic evolution. Few organisms have reengineered their mitochondrial genomes as thoroughly as the protist lineage of dinoflagellates. Recent work reveals dinoflagellate mitochondrial genomes as likely the most gene‐impoverished of any free‐living eukaryote, encoding only two to three proteins. The organization and (...) expression of these genomes, however, is far from the simplicity their gene content would suggest. Gene duplication, fragmentation, and scrambling have resulted in an inflated and complex genome organization. Extensive RNA editing then recodes gene transcripts, and trans‐splicing is required to assemble full‐length transcripts for at least one fragmented gene. Even after these processes, messenger RNAs (mRNAs) lack canonical start codons and most transcripts have abandoned stop codons altogether. (shrink)

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 discussions with structured questions and prompts. This manuscript examines discussions from the second Saturday which focused (...) on the benefits and risks of returning aggregate and individual research results regarding both adults (morning session) and children (afternoon session). Attitudes were assessed in pre-engagement and post-engagement surveys. Results The authors recruited 45 African-American adults whose children received medical care at two healthcare facilities on the South Side of Chicago that serve different socioeconomic communities. Three dominant themes were identified. First, most participants stated that they would enrol themselves and their children in a biobank, although there was a vocal minority opposed to enrolling children, particularly children unable to participate in the consent process. Second, participants did not distinguish between the results they wanted to receive regarding themselves and their children. Supplemental survey data found no attitudinal changes pre-engagement and post-engagement. Third, participants believed that children should be allowed access to their health information, but they wanted to be involved in deciding when and how the information was shared. Discussion Participant attitudes are in tension with current biobank policies. An intensive educational effort had no effect on their attitudes. (shrink)

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 trauma, and direct observation of treatment and simplification of medical regimens to (...) improve drug adherence. Traditionally, the physician defined the problem and told the patient what she needed to do. In the modern era of .. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Book Reviews St. Auc~stine and Being: A Me$aphyM,cal Essay. By James F. Anderson. (The Hague: Martinus Nijhoff, 1965.Pp. viii [i] + 76. Guilders 9.90.) Contemporary students of medieval philosophy, especially those influenced by the writings of Gilson, usually view Augustine as primarily an essentialist in metaphysics, while Aquinas is viewed as some sort of existentialist. This is taken to mean that, whereas Augustine seems to identify being with essence (...) or wha~ a thing is, Aquinas distinguishes between what a thing is and its act of existence. The major contribution of Aquinas to later philosophy is often depicted as this distinction between essence and existence. Perhaps the major interest and value of Professor Anderson's essay is that it contests this currently predominant opinion of the essentialist character of Augustinian metaphysics and calls for a re-evaluation of the supposedly revohi~ionary character of the Thomistic concentration upon the act of existence. It is quite evident that Augustine broke with Plotinus when he asserted that the first principle of all things was God, being itself (ipsum esse), rather than the One, which transcends being. The controversy arises over Augustine's view of the nature of being (esse). For Gilson the notion of being remained for Augustine Neoplatonic, while for Anderson Augustine introduced an existential aspect to the notion of being lacking in Neoplatonic thought. Citing the same texts for support Gilson maintains that Augustine interprets the name of God given in Exodus as "I am he who never changes," while Anderson maintains that Augustine interprets Exodus as asserting that God is being, in the sense of existence, itself. The major point of disagreement between Gilson and Anderson is not whether Augustine regarded being as pre~ dominant, but how Augustine interpreted the notion of being. In some texts Augustine maintsSns that being and immutability mean the same thing, in others he argues that a thing truly is 'because it is immutable, and in yet others he argues that a thing is immutable because it truly is. The first opinion seems to be the one frequently favored as an interpretation of Augustine by Gilson. The second is usually regarded as Neoplatonic. The third is the opinion which Professor Anderson argues was most accurately Augustine's. According to Professor Anderson the first two opinions reflect for Augustine a merely factual connection between being and immutability, whereas the third reflects a metaphysical entailment. I should like to mention three points in Professor Anderson's discussion which seem to me weak. Firstly, as Augustine remarks that being is the name for unchangeableness we cannot take this as asserting a merely factual relationship. Secondly, to say that 'being' and 'immutability ~mean the same thing to Augustine or that being and immutability are identical to him does not necessitate, as Professor Andersen claims, denying the primacy of being. If 'being' and 'immutability' mean the same thing, then it is very peculiar to ask which is primary. If it is remarked that 'triangleI means the same thing as 'three sided figure', what sense does it make to ask which notion is primary? I suspect that Professor Anderson's contention makes sense only if one believes that there is a difference in the meanings of 'being' and 'immutability ', but whether or not there was such a difference for Augustine is precisely the point at issue. Professor Anderson asserts that it would be a "metaphysical inconsistency" to claim that God is both being and immutability, but it is not clear why such a claim would be inconsistent if the two terms in fact mean the same thing (p. 30). Thirdly, if, as is in fact the case, Augustine's remarks on the relationship between immutability and being are inconsistent perhaps we should accept the possibility that Augustine himself never came to a clear view on this matter rather than attempt to surmise what Augustine "must have meant." Of course, such inconsistency in Augustine's writings would tend to support the thesis of Gilson that Augustine has difficulties reconciling his theology and metaphysics. Moreover, the analogy Professor Anderson suggests between the Augustinian mutability-immutability contrast and the Thomistic potency-act contrast could only be a very rough one... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Book Reviews St. Auc~stine and Being: A Me$aphyM,cal Essay. By James F. Anderson. (The Hague: Martinus Nijhoff, 1965.Pp. viii [i] + 76. Guilders 9.90.) Contemporary students of medieval philosophy, especially those influenced by the writings of Gilson, usually view Augustine as primarily an essentialist in metaphysics, while Aquinas is viewed as some sort of existentialist. This is taken to mean that, whereas Augustine seems to identify being with essence (...) or wha~ a thing is, Aquinas distinguishes between what a thing is and its act of existence. The major contribution of Aquinas to later philosophy is often depicted as this distinction between essence and existence. Perhaps the major interest and value of Professor Anderson's essay is that it contests this currently predominant opinion of the essentialist character of Augustinian metaphysics and calls for a re-evaluation of the supposedly revohi~ionary character of the Thomistic concentration upon the act of existence. It is quite evident that Augustine broke with Plotinus when he asserted that the first principle of all things was God, being itself (ipsum esse), rather than the One, which transcends being. The controversy arises over Augustine's view of the nature of being (esse). For Gilson the notion of being remained for Augustine Neoplatonic, while for Anderson Augustine introduced an existential aspect to the notion of being lacking in Neoplatonic thought. Citing the same texts for support Gilson maintains that Augustine interprets the name of God given in Exodus as "I am he who never changes," while Anderson maintains that Augustine interprets Exodus as asserting that God is being, in the sense of existence, itself. The major point of disagreement between Gilson and Anderson is not whether Augustine regarded being as pre~ dominant, but how Augustine interpreted the notion of being. In some texts Augustine maintsSns that being and immutability mean the same thing, in others he argues that a thing truly is 'because it is immutable, and in yet others he argues that a thing is immutable because it truly is. The first opinion seems to be the one frequently favored as an interpretation of Augustine by Gilson. The second is usually regarded as Neoplatonic. The third is the opinion which Professor Anderson argues was most accurately Augustine's. According to Professor Anderson the first two opinions reflect for Augustine a merely factual connection between being and immutability, whereas the third reflects a metaphysical entailment. I should like to mention three points in Professor Anderson's discussion which seem to me weak. Firstly, as Augustine remarks that being is the name for unchangeableness we cannot take this as asserting a merely factual relationship. Secondly, to say that 'being' and 'immutability ~mean the same thing to Augustine or that being and immutability are identical to him does not necessitate, as Professor Andersen claims, denying the primacy of being. If 'being' and 'immutability' mean the same thing, then it is very peculiar to ask which is primary. If it is remarked that 'triangleI means the same thing as 'three sided figure', what sense does it make to ask which notion is primary? I suspect that Professor Anderson's contention makes sense only if one believes that there is a difference in the meanings of 'being' and 'immutability ', but whether or not there was such a difference for Augustine is precisely the point at issue. Professor Anderson asserts that it would be a "metaphysical inconsistency" to claim that God is both being and immutability, but it is not clear why such a claim would be inconsistent if the two terms in fact mean the same thing (p. 30). Thirdly, if, as is in fact the case, Augustine's remarks on the relationship between immutability and being are inconsistent perhaps we should accept the possibility that Augustine himself never came to a clear view on this matter rather than attempt to surmise what Augustine "must have meant." Of course, such inconsistency in Augustine's writings would tend to support the thesis of Gilson that Augustine has difficulties reconciling his theology and metaphysics. Moreover, the analogy Professor Anderson suggests between the Augustinian mutability-immutability contrast and the Thomistic potency-act contrast could only be a very rough one... (shrink)

In “The Harm Principle Cannot Replace the Best Interest Standard: Problems With Using the Harm Principle for Medical Decision Making for Children,” Bester argues that conceptual and normative diffi...

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 patient's best interests.

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 patient's best interests.

The doxastic view (DV) of trust maintains that trust essentially involves belief. In a recent paper, Arnon Keren (Citation2020) gestures toward a new objection to the view, labeled Trust’s Meno Problem (TMP), which calls into question the DV’s ability to explain the widely held intuition that trust has distinct and indispensable value. As of yet, there has been no attempt to take up TMP on behalf of DV. This paper aims to fill precisely this lacuna. I do so in three (...) main stages. In §1 I contextualize and elucidate the problem, to which Keren gestures but does not address in detail. In §2 I disambiguate multiple possible interpretations of TMP, seeking to identify the most philosophically challenging. Finally, in §3, I argue that DV can solve even this interpretation. In order to do so, I make use ofthe highly plausible claim we find in the work of Katherine Hawley (Citation2012, 2019): that trust pays a compliment to the trustee. The payoffs of exploring the doxastic view in the context of Trust’s Meno Problem are twofold: we better understand the nature of the problem itself, and we see that the doxastic view can give a satisfying answer. (shrink)

The advanced donation program was proposed in 2014 to allow an individual to donate a kidney in order to provide a voucher for a kidney in the future for a particular loved one. In this article, we explore the logistical and ethical issues that such a program raises. We argue that such a program is ethical in principle but there are many logistical issues that need to be addressed to ensure that the actual program is fair to both those who (...) do and do not participate in this program. (shrink)

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...

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...

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 in pediatric research. Section 2 deals (...) with challenges to regulations. Section 3 discusses the strengths and limits of current regulations, while different case studies are examined in Section 4. (shrink)

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 decision making), or both. Those who defend it as only (...) a guidance principle often cite the harm principle as the appropriate intervention principle. In this article, I challenge current use of the best interest principle in pediatric decision making as a guidance principle and as an intervention principle. I propose a model that I call constrained parental autonomy, which focuses on promoting and protecting the child’s primary goods or basic needs. I show that constrained parental autonomy can serve as both a guidance principle and an intervention principle in making decisions. I conclude by examining a case study involving bone marrow donation by a young child to her sister. (shrink)

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. (shrink)

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...

The term “exceptionalism” was introduced into health care in 1991 when Bayer described “HIV exceptionalism” as the policy of treating the human immunodeficiency virus different from other infectious diseases, particularly other sexually transmitted diseases. It was reflected in the following practices: pre- and post-HIV test counseling, the development of specific separate consent forms for HIV testing, and stringent requirements for confidentiality of HIV test results. The justification for these practices was the belief that testing was essential for prevention and that (...) patients might not seek HIV testing if confidentiality were not guaranteed. Confidentiality was believed to be particularly important given the degree of discrimination and stigmatization associated with the illness. Anonymous testing was a further step in ensuring strict confidentiality, even though such a practice prevented public officials from contacting partners and others who were at risk. (shrink)

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 guardianship based on a hierarchy of relationships. Surrogates are expected.. (shrink)

In 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. (shrink)

The term “exceptionalism” was introduced into health care in 1991 when Bayer described “HIV exceptionalism” as the policy of treating the human immunodeficiency virus different from other infectious diseases, particularly other sexually transmitted diseases. It was reflected in the following practices: pre- and post-HIV test counseling, the development of specific separate consent forms for HIV testing, and stringent requirements for confidentiality of HIV test results. The justification for these practices was the belief that testing was essential for prevention and that (...) patients might not seek HIV testing if confidentiality were not guaranteed. Confidentiality was believed to be particularly important given the degree of discrimination and stigmatization associated with the illness. Anonymous testing was a further step in ensuring strict confidentiality, even though such a practice prevented public officials from contacting partners and others who were at risk. (shrink)

The argument for children's rights in health care has been long in the making. The success of this position is reflected in the 1995 American Academy of Pediatrics recommendations for the role of children in health care decisionmaking, which suggest that children be given greater voice as they mature. But there are good moral and practical reasons for exercising caution in these health care situations, especially when the child and parents disagree. Parents need the moral and legal space within which (...) to make decisions that will facilitate their child's long‐term autonomy, not only her present‐day autonomy. Moreover, third‐party intrusion, by physicians or the state, should be resisted unless negligent and abusive decisions are in the making. (shrink)

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 blood circulating, with or without a beating heart or functioning lungs. In (...) Defining Death: The Case for Choice, Robert Veatch and I argue that the definition of death should focus on “what change in a human being is so fundamental that we can say the individual is no longer with us as a member of the human community bearing rights such as the right not to be killed.” We assert that this decision is a normative issue about which different stakeholders may believe that different changes are fundamental, and we therefore propose that the optimal policy solution may be to allow stakeholders to choose their own definition within a reasonable range of options. There are three caveats that need to be highlighted regarding this approach. (shrink)

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 and (...) examine whether the policy was morally justifiable. I then examine how three changes to NBS programs are prompting a re-evaluation of the mandatory nature of NBS. The three changes are: (1) the implementation of .. (shrink)

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...

Book reviewed in this article: Women & Children in Health Care: An Unequal Majority. By Mary Briody Mahowald.

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 statements about pediatric decision-making (specifically those developed by the American Academy of Pediatrics), (...) highlighting similarities and differences. Finally, the article discusses the value of finding consensus in the field of pediatric bioethics. (shrink)