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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 [...]

To promote informed reproductive decisions, prenatal carrier testing is offered to women and couples to provide information about the risk of having a child with one or more genetic conditions. [...]

I. INTRODUCTION Medical research is heavily funded: the National Institutes of Health had a budget of over $20 billion in 2001, and even more money was spent by the pharmaceutical [...]

Jeffrey Kahn and I agree that "organ donation by altruistic strangers is acceptable, and that the organs procured this way ought to be allocated equitably." (1) Our agreement in principle, [...]

In August 2000, Arthur Matas and his colleagues described a protocol in which their institution began to accept as potential donors, individuals who came to the University of Minnesota hospital [...]

In August 2001, the Maryland Court of Appeals harshly criticized the Kennedy Krieger Institute of Johns Hopkins University for knowingly exposing poor children to lead-based paint. (1) The court's decision [...]

Although the Uniform Determination of Death Act (UDDA) has served as a model statute for 40 years, there is a growing recognition that the law must be updated. One issue being considered by the Uniform Law Commission's Drafting Committee to revise the UDDA is whether the text “all functions of the entire brain, including the brainstem” should be changed. Some argue that the absence of diabetes insipidus indicates that some brain functioning continues in many individuals who otherwise meet the “accepted medical standards” like the American Academy of Neurology's. The concern is that the legal criteria and the medical standards used to determine death by neurologic criteria are not aligned. We argue for the revision of the UDDA to more accurately specify legal criteria that align with the medical standards: brain injury leading to permanent loss of the capacity for consciousness, the ability to breathe spontaneously, and brainstem reflexes. We term these criteria neurorespiratory criteria and show that they are well-supported in the literature for physiologic and social reasons justifying their use in the law.

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 permission for evaluations and managing refusals. Of the 334 respondents who had performed an evaluation for DNC, 35 percent reported they had experienced at least one parental refusal, and 64.4 percent reported that they did not seek permission to perform an evaluation. Pediatric neurologists, careproviders who had less experience doing evaluations, and careproviders who had experienced parental refusal of an evaluation were more likely to obtain permission from parents. Most (80.8 percent) of respondents reported that their institution had a DNC policy. We found variability in many aspects of DNC evaluations and declarations, as well as the handling of refusals. Lack of consistency may make it more difficult for careproviders and families. Greater understanding of parental refusal of DNC evaluation is essential to inform efforts to increase consistency.

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, meaning that Tallman is suggesting “helping parents allow their children to hurt themselves.” As a general pediatrician, I would classify this as child neglect, if not downright child abuse. I argue that pediatricians should counsel directively against youth tackle football, employ a deliberative approach to shared decision making within the triadic doctorpatient- parent relationship, and support youth sport policies that seek to reduce traumatic brain injury by advocating for flag football, by prohibiting checking in boys’ ice hockey, and by minimizing heading the ball in soccer below a certain age.

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 additional concerns about the parents’ capacity to make decisions that are best for the child, given that the injury occurred. We argue that there are important reasons not to exclude parents from the decision-making process and that, with appropriate safeguards in place, parents are integral to determining what is best for the child.

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.

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 aim for the great, although Hester tempers it with a pragmatic principle that allows consideration of cultural/family values and practical/financial/social/psychological circumstances. I reject the aspirational guidance principle because it is too demanding, and I also reject the notion that this pragmatic condition “gives permission for others to extol parents to give reasons” for their decisions, because it allows too much interference into the family and its decision making. Whereas the other respondents and I focus on whether and when third parties should intervene in the doctor-patient (surrogate) relationship, Navin and Wasserman mistakenly redefine intervention to include physicians’ behaviors that attempt to influence parents, ignoring the integral role of shared decision making—a bidirectional discussion in which physicians help patients (surrogates) select among reasonable medical options through education, and, when necessary, motivation or persuasion. Diekema and Salter focus on the harm principle for intervention, ignoring other conditions when intervention may be appropriate and institutions other than the state that may intervene. Paquette’s overly narrow interpretation of who has positive obligations to children fails to ensure their basic interests and needs are met. Finally, Bester claims the “need to choose the available option that best promotes or protects the child’s basic interests” is akin to a focus on best interest. But constrained parental autonomy does not require parents to choose the option that best promotes their child’s basic interests. Rather, it requires respect for broad parental discretion about how they raise their child unless their decisions fail to promote the child’s basic needs and interests.

Introduction. The first successful kidney transplant in humans was performed in 1954. In the following 25 years, the biomedical, ethical, and social implications of kidney transplantation were widely discussed by both healthcare professionals and the public. Issues relating to race, however, were not commonly addressed, representing a “blind spot” regarding racial disparities in access and health outcomes. Methods. Through primary sources in the medical literature and lay press, this paper explores the racial dynamics of kidney transplantation in the 1950–1970s in the United States as the procedure grew from an experimental procedure to the standard of care for patients in end-stage renal disease (ESRD). Results & Discussion. An extensive search of the medical literature found very few papers about ESRD, dialysis, or renal transplant that mentioned the race of the patients before 1975. While the search did not reveal whether race was explicitly used in determining patient access to dialysis or transplant, the scant data that exist show that African-Americans disproportionately developed ESRD and were underrepresented in these early treatment populations. Transplant outcome data in the United States failed to include race demographics until the late 1970s. The Social Security Act of 1972 (PL 92-603) extended Medicare coverage to almost all Americans with ESRD and led to a rapid increase in both dialysis and kidney transplantation for African-Americans in ESRD, but disparities persist today.

The term "exceptionalism" was introduced into health care in 1991 when Bayer described "HIV exceptionalism" as the policy of treating the human immunodeficiency virus (HIV) different from other infectious diseases, [...]

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 [...]

Legislative exemptions should apply to parental decisions not to vaccinate a child because of religious beliefs, although such decisions qualify as medical neglect. Since only a very small percentage of parents do not vaccinate their children for religious reasons, the risk of disease to the public is not significant. Only in the case of significant risk of disease would it be ethically defensible for the state to vaccinate over religious exemptions.

Every year, millions of children in the United States participate in youth full-contact sports, which carry concussion risks—the long-term sequelae of which are not well understood. We examined the attitudes and knowledge of adults in Chicago about youth sports participation, concussion risk, and whether physicians should counsel against youth participation in full-contact sports.

Background: Traditionally, living kidney donors were first-degree relatives due to both greater biological compatibility and concerns about extrafamilial motivation. Because familial relationships often entail distinctive experiences of moral obligation, health-care providers must be attentive to potential undue influences on intrafamilial donor decision-making processes to ensure that decisions are voluntary.Methods: Qualitative interviews were conducted with 20 individuals who donated kidneys to first-degree relatives and subsequently developed end-stage renal disease themselves.Findings: We analyze the different influences kinship obligations had on participants’ decision-making processes. Although participants described their decision to donate as obvious, an appropriate kin response, and free from external pressure, they indirectly expressed some ambivalence—both by their description of the rapidity of the process and in their concern about exposing an intimate to the risks of living donation.Discussion: Our data uncovered an asymmetry. Although our participants claimed that they would donate again, none received a living donor kidney. Our data also highlight the moral significance of the interdependence of donor and recipient in intrafamilial kidney donation and its impact on the range of voluntary choices as perceived by the donor. Their decision-making must be understood as embedded within a network of intimate social relations.

Living children should be permitted to donate organs to their family members alone. The consent of a parent for donations with no or minimal risk should be sufficient regardless of the child's opinion while risky procedures should be limited to the child's consent. Children should never be allowed to participate in transplants that have not been proven effective regardless of the risk to the donor. Within limits, allowing children to be living donors can be morally acceptable and not significantly violate their personhood.

The research with focus groups of parents suggested that information on newborn metabolic screening needs to be integrated into prenatal care. The outcome of prenatal education should include parental comprehension of testing, increased parental compliance, improved health outcomes in the children.

Maturity-onset diabetes of the young (MODY) represents a heterogenous group of monogenic diabetes. Despite its autosomal dominant inheritance, many MODY participants in the University of Chicago Monogenic Diabetes Registry have no family members enrolled. We aimed to gather data on the Registry participants’ experiences in (1) receipt of an accurate diagnosis, (2) decisions regarding disclosure of their MODY genetic test results with biological relatives, and (3) recommendations toward our Registry’s processes and outreach.

Although traditional medical ethics focuses on the dyadic doctor–patient relationship, when the patient is a child, the relationship is triadic, meaning it involves the patient, the parent(s), and the clinician. A brief examination of the family, the rights and responsibilities of parents, the rights of children, and the moral basis of the parent–child relationship provide a philosophic underpinning for understanding the family in pediatric decision-making. Although biological parents have presumptive authority to make health-care decisions for their children, and are given wide discretion, parental autonomy is not absolute.

There are three main arguments for universal immunisation against chickenpox in childhood. Firstly, immunisation is good for the children who are immunised; secondly, it is good for immunocompromised children, who [...]

The authors show that the new KDPI does not accurately predict pediatric kidney graft survival and propose 2 novel indices: the Child Donor Index and the Adolescent Donor Index, which include body mass index percentiles in the model. Supplemental digital content is available in the text.

Genetic mutations in apolipoprotein L1 (ApoL1) are associated with kidney disease. Apolipoprotein L1 mutations are common in African Americans (∼39% and 12% have 1 and 2 high-risk alleles, respectively). Carrying 2 ApoL1 risk alleles may explain much of the excess rate of kidney failure in African Americans compared to European Americans. Apolipoprotein L1 also has implications for kidney transplantation. Kidney grafts from deceased donors with 2 ApoL1 risk alleles have worse graft survival, but outcomes appear unaffected by recipient ApoL1 status. Unknown is whether donation increases the risk of kidney failure in living donors with 2 ApoL1 risk alleles and whether their donated kidneys have worse graft survival. There are 4 options to consider: (1) remain silent about ApoL1 risk alleles and renal failure and wait for more data; (2) counsel about race, ApoL1, and subsequent renal failure abstractly but remain agnostic about donor testing until more data are available; (3) provide counseling and encourage genotyping of prospective living donors of African ancestry as part of the living donor workup; or (4) mandate testing of all prospective living donors. We support option 3, and recommend, with donor permission, to discuss the results with potential recipients to promote informed decision-making. We also argue for a voluntary donor registry that collects long-term follow-up information. We provide ethical arguments to support these recommendations.

Limited data exist on medical error disclosure in pediatrics. We sought to assess physicians' attitudes toward error disclosure to parents and pediatric patients.

In March 1966, the Ciba Foundation sponsored the first international, interdisciplinary symposium focused on ethical and legal issues in transplantation. The attendees included not only physicians and surgeons but also judges and legal scholars, a minister, and a science journalist. In this article, we will consider some of the topics in organ transplantation that were discussed by the attendees, what we have learned in the intervening half century, and the relevance of their discussions today. Specifically, we examine the definition of death and its implications for organ procurement, whether it is ethical and legal to “maim” a living individual for the benefit of another, how to ensure that the consent of the living donor is voluntary and informed, the case of identical twins, the question of whether ethically minors can serve as living donors, the health risks of living donation, the ethics and legality of an organ market, and the economic barriers to living donation. We show that many of the concerns discussed at the Ciba symposium remain highly relevant, and their discussions have helped to shape the ethical boundaries of organ transplantation today.The Ciba Foundation sponsored the first international symposium focused on ethical and legal issues in transplantation. Fifty years later, it is interesting to evaluate its legacy but also the still unanswered questions regarding the definition of death and the use of living donors.

Informed consent is an essential component of optimal patient care. Scant data exist about pediatric residents' experiences, comfort level, and educational exposure to informed consent discussions.

Genetic testing for neurologic and developmental disorders spans the spectrum from universal newborn screening for conditions like phenylketonuria to diagnostic testing for suspected genetic conditions, to predictive genetic testing for childhood-onset conditions. Given that virtually all children in the United States undergo genetic screening in the newborn period, this article focuses on 3 actual case studies of neurologic and developmental disorders that have been included or proposed for inclusion in newborn screening programs: Duchenne muscular dystrophy (a neuromuscular disorder), Krabbe disease (a neurodegenerative disorder), and fragile X syndrome (a neurodevelopmental disorder).

The decision by Dutch doctors to repair surgically the hymens of young women to mimic the virginal state is as a case in which cultural values conflict with medical ethics. [...]

The American College of Medical Genetics and Genomics recently issued recommendations for reporting incidental findings from clinical whole-genome sequencing and whole-exome sequencing. The recommendations call for evaluating a specific set of genes as part of all whole-genome sequencing/whole-exome sequencing and reporting all pathogenic variants irrespective of patient age. The genes are associated with highly penetrant disorders for which treatment or prevention is available. The effort to generate a list of genes with actionable findings is commendable, but the recommendations raise several concerns. They constitute a call for opportunistic screening, through intentional effort to identify pathogenic variants in specified genes unrelated to the clinical concern that prompted testing. Yet for most of the genes, we lack evidence about the predictive value of testing, genotype penetrance, spectrum of phenotypes, and efficacy of interventions in unselected populations. Furthermore, the recommendations do not allow patients to decline the additional findings, a position inconsistent with established norms. Finally, the recommendation to return adult-onset disease findings when children are tested is inconsistent with current professional consensus, including other policy statements of the American College of Medical Genetics and Genomics. Instead of premature practice recommendations, we call for robust dialogue among stakeholders to define a pathway to normatively sound, evidence-based guidelines.Genet Med 15 11, 854–859.Genetics in Medicine (2013); 15 11, 854–859. doi:10.1038/gim.2013.113

Purpose:This article explores expressions of therapeutic misconception (TM) in a deliberative-engagement project focused on the return of aggregate and individual genetic results from biobank-based research.Methods:We enrolled 45 self-described African Americans in a deliberative-engagement project to explore their attitudes regarding the return of results from biobank-based research. Four groups of individuals participated in four sessions over 2 days that included both educational and focus-group components.Results:TM was expressed by individuals from both clinics on each day that they met. Three main typological categories of TM were noted: (i) the reasons for consenting to participate in a biobank, (ii) the conflation of research with clinical care, and (iii) mistrust about the meaning of biomedical research findings.Conclusion:Although trust may explain why some research participants express TM, it was also fueled by mistrust (e.g., a disbelief that a condition described as untreatable was truly untreatable). We also found that TM is not due solely to research participants’ misunderstandings but is a bidirectional phenomenon that can be exacerbated by researchers. This finding raises questions about how to engage prospective research participants in the long-term goals of biobank-based research without unintentionally overstating possible short-term clinical benefits.Genet Med 2012:14(6):611–615

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 by 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 given by Testa and colleagues fail.We argue (1) why the hurdles that one must overcome to become a living donor are appropriate; and (2) that the similarities between living donor transplant surgery and cosmetic plastic surgery that the authors describe are inaccurate. Finally, we consider the recommendation to treat plastic surgery patients and living donors more similarly. We argue that any change should not be in the direction of becoming less protective of living donors, but more protective of cosmetic plastic surgery candidates.

Sickle cell disease (SCD) is found in many ethnic groups, with the highest prevalence of heterozygote carriers (sickle cell trait [SCT]) in African Americans. SCT is associated with an increased risk of fatal exertional heat illness, renal papillary necrosis, and splenic infarction. Since 2006, all infants born in the United States are required to be screened for hemoglobinopathies as part of newborn screening (NBS). In 2010, as part of a legal settlement, the National Collegiate Athletic Association (NCAA) implemented SCT screening in division I athletes.

In the United States, newborn screening programs universally identify newborns with sickle cell disease (SCD) and heterozygote carriers (sickle cell trait [SCT]). Although there is a consensus to disclose SCT to parents, there are limited empirical data about whether and how this information is transmitted to the carrier children.

Illinois introduced mandatory newborn screening NBS for sickle cell disease SCD in 1989 and for cystic fibrosis CF in 2008. We examined maternal understanding of NBS for SCD and CF, and their knowledge of the genetics, symptoms, and treatments of both conditions. Our methods consisted of conducting interviews of inpatient postpartum women >18 years and English speaking. Our results showed that of the 388 eligible participants, 34 selfidentified as sickle cell carriers, 1 with SCD and 1 as a CF carrier. Almost 34 were African American 282387. Although all but 5 women had prenatal care, only 35 133378 recalled their prenatal care provider mentioning NBS, and only 56 217388 of participants recalled nursery staff mentioning NBS. There was more selfreported familiarity with SCD 3.325 than CF 1.975, P < 0.001. Over 23 260388 of participants could not answer CF knowledge questions because they had never heard of CF. Among those who had heard of the conditions, mean knowledge scores were 66 for SCD n  372 and 63 for CF n  128. Bivariate analysis identified education, age, race, marital status, and insurance status as statistically significant. After linear regression education remained significant for both conditions. We conclude that in a sample of predominantly African American postpartum women, we found poor understanding of NBS, greater familiarity with SCD, and significant knowledge gaps for both SCD and CF. There are many missed educational opportunities for educating parents about NBS and specific conditions included in NBS panels in both the obstetric clinics and the nursery. © 2009 WileyLiss, Inc.