This paper reviews the ethical literature on conflicts between health professionals and parents about medical decision-making for children. We present the results of a systematic review which addressed the question ‘when health professionals and parents disagree about the appropriate course of medical treatment for a child, under what circumstances is the health professional ethically justified in overriding the parents’ wishes?’ We identified nine different ethical frameworks that were put forward by their authors as applicable across various ages and clinical scenarios. (...) Each of these frameworks centred on a different key moral concept including harm, constrained parental autonomy, best interests, medically reasonable alternatives, responsible thinking and rationality. (shrink)

In this article, we analyse the novel case of Phoenix, a non-binary adult requesting ongoing puberty suppression to permanently prevent the development of secondary sex characteristics, as a way of affirming their gender identity. We argue that the aim of OPS is consistent with the proper goals of medicine to promote well-being, and therefore could ethically be offered to non-binary adults in principle; there are additional equity-based reasons to offer OPS to non-binary adults as a group; and the ethical defensibility (...) of facilitating individual requests for OPS from non-binary adults also depends on other relevant considerations, including the balance of potential benefits over harms for that specific patient, and whether the patient’s request is substantially autonomous. Although the broadly principlist ethical approach we take can be used to analyse other cases of non-binary adults requesting OPS apart from the case we evaluate, we highlight that the outcome will necessarily depend on the individual’s context and values. However, such clinical provision of OPS should ideally be within the context of a properly designed research study with long-term follow-up and open publication of results. (shrink)

In vitro gametogenesis (IVG) might offer numerous research and clinical benefits. Some potential clinical applications of IVG, such as allowing opposite‐sex couples experiencing infertility to have genetically related children, have attracted support. Others, such as enabling same‐sex reproduction and solo reproduction, have attracted significantly more criticism. In this paper, we examine how different ethical principles might help us to draw lines and distinguish between ethically desirable and undesirable uses of IVG. We discuss the alleged distinction between therapeutic and non‐therapeutic uses (...) of assisted reproduction in the context of IVG, and show how it is both problematic to apply in practice and theoretically dubious. We then discuss how the ethical principles of reproductive justice and beneficence apply to IVG for opposite‐sex reproduction, same‐sex reproduction, and solo reproduction. We suggest that these principles generate strong reasons for the use of IVG for opposite‐sex and same‐sex reproduction, but not for solo reproduction. (shrink)

Clinical ethics has been developing in paediatric healthcare for several decades. However, information about how paediatricians use clinical ethics case consultation services is extremely limited. In this project, we analysed a large set of case records from the clinical ethics service of one paediatric hospital in Australia. We applied a paediatric-specific typology to the case referrals, based on the triadic doctor–patient–parent relationship. We reviewed the 184 cases referred to the service in the period 2005–2014, noting features including the type of (...) case, the referring department(s) and the patient9s age at referral. The two most common types of referral involved clinician uncertainty about the appropriate care pathway for the child (26% of total referrals) and situations where the child9s parents disagreed with the doctors’ recommendations for the child9s care (22% of total referrals). Referrals came from 28 different departments. Cancer, cardiology/cardiac surgery and general medicine referred the highest numbers of cases. The most common patient age groups were children under 1, and 14–15 years old. For three controversial areas of paediatric healthcare, clinicians had initiated processes of routine review of cases by the clinical ethics service. These insights into the way in which one very active paediatric clinical ethics service is used further our understanding of the work of paediatric clinical ethics, particularly the kinds of ethically challenging cases that paediatricians view as appropriate to refer for clinical ethics support. (shrink)

We thank the commentators for their thoughtful responses to our article.1 Due to space constraints, we will confine our discussion to just three key issues. The first issue relates to the central ethical conundrum for clinicians working with young people like Phoenix: namely, how to respect, value and defer to a person’s own account of their identity and what is needed for their well-being, while staying open to the possibility that such an account may reflect a work in progress. This (...) conundrum thus relates both to what will be beneficial for that person and what constitutes respecting their autonomy, and clinicians must dwell on these questions when deciding what forms of medical intervention to offer. D’Angelo,2 Lemma3 and Wren4 highlight the importance of considering Phoenix as a ‘whole person in context’ 2 prior to initiating treatment or care. In this way, they advocate for a process of ‘therapeutic exploration’,4 which includes taking sufficient time to explore Phoenix’s personhood with them so as to support them in achieving an ‘authentic self-discovery’.2 We agree with these authors that identity development is a complex, life-long process that is influenced by biological, psychosocial and relational aspects, all of which may contribute to an individual’s desire to pursue gender-affirming interventions. To explore the various factors—both conscious and unconscious—that might be motivating Phoenix’s decision to pursue ongoing puberty suppression, D’Angelo,2 Lemma3 and Wren4 describe a comprehensive psychological approach to working with transgender and gender diverse individuals and propose questions to guide such discussions. Consistent with this approach, we stipulated that Phoenix had undergone regular psychological counselling and that the psychologist had judged that ‘Phoenix’s distress is significant and enduring…not a symptom …. (shrink)

While solid organ transplantation for patients with substance use issues has attracted ethical discussion, a typology of the ethics themes has not been articulated in the literature. We conducted a scoping review of peer-reviewed literature on solid organ transplantation and substance use published between January 1997 and April 2016. We aimed to identify and develop a typology of the main ethical themes discussed in this literature and to identify gaps worthy of future research. Seventy articles met inclusion criteria and underwent (...) inductive content analysis. Four main ethical themes were identified: (1) personal responsibility; (2) utility; (3) moral character; and (4) fairness. Each theme had multiple sub-themes and there was substantial overlap between themes. This scoping review identified a disproportionate emphasis in the literature regarding personal responsibility, which was referenced by each of the other themes, and a narrow focus on alcohol and liver. We recommend future research further investigate these connections between ethical themes and focus on ethical issues associated with transplants from organ groups other than liver for patients who use substances other than alcohol. (shrink)

Clinical ethics records offer bioethics researchers a rich source of cases that clinicians have identified as ethically complex. In this paper, we suggest that clinical ethics records can be used to point to types of cases that lack attention in the current bioethics literature, identifying new areas in need of more detailed bioethical work. We conducted an analysis of the clinical ethics records of one paediatric hospital in Australia, focusing specifically on conflicts between parents and health professionals about a child’s (...) medical treatment. We identified, analysed, and compared cases of this type from the clinical ethics records with cases of this type discussed in bioethics journals. While the cases from journals tended to describe situations involving imminent risk to the child’s life, a significant proportion of the clinical ethics records cases involved different stakes for the child involved. These included distress, poorer functional outcome, poorer psychosocial outcome, or increased risk of surgical complications. Our analysis suggests that one type of case that warrants more detailed ethics research is parental refusal of recommended treatment, where the refusal does not endanger the child’s life but rather some other aspect of the child’s well-being. (shrink)

Bioethics, Volume 35, Issue 7, Page 696-703, September 2021.

Background There is ongoing debate regarding whether and under which circumstances secondary findings (SF) should be offered in the pediatric context. Although studies have examined patient perspectives on receiving SF, little research has been conducted examining the experiences of clinicians offering SF to parents of newborns receiving genomic sequencing for a recently diagnosed medical condition.Methods To address this, we conducted qualitative interviews exploring the views and experiences of 12 clinicians who offered SF to parents of infants who had diagnostic exome (...) sequencing (ES) to identify the cause of their hearing loss. Interviews explored clinicians’ accounts of parents’ choices and decision-making about receiving SF, their views on whether and when to offer SF, their experiences returning SF, and any ethical challenges they encountered. Interviews were audio-recorded, transcribed and analyzed using inductive content analysis.Results Clinicians reported parents who declined all SF often felt finding out about future conditions unrelated to their child’s hearing loss may be unhelpful, or even harmful, or were overwhelmed by their child’s diagnosis. Clinicians also reported that some parents chose SF because they felt obliged to, even if they did not want to receive them. They explained that while some parents experienced decision-making regarding SF as positive, for others, this process was challenging or distressing. While clinicians generally agreed SF should be offered, mainly to promote parental choice, most felt SF should be offered after disclosing diagnostic results, primarily to avoid overwhelming parents. Clinicians encountered several ethical challenges, including balancing parental autonomy with non-maleficence, wanting to report or not report certain SF, and questioning whether parents can make an autonomous choice regarding SF.Conclusions Our findings, which are novel as they relate to parents of young infants with a recent diagnosis of hearing loss, add new insights into clinicians’ and parents’ decision-making regarding SF in pediatrics. (shrink)

One element of the American Society for Bioethics and Humanities’ recently-piloted quality attestation portfolio for clinical ethics consultants is a “philosophy of clinical ethics consultation statement” describing the candidate’s approach to clinical ethics consultation. To date, these statements have been under-explored in the literature, in contrast to philosophy statements in other fields such as academic teaching. In this article, I argue there is merit in expanding the content of these statements beyond clinical ethics consultation alone to describe the author’s approach (...) to other important “domains” of healthcare ethics practice. I also claim such statements have at least three additional uses outside quality attestation: as a reflective practice learning tool to increase role clarity among practicing healthcare ethicists and bioethics fellows; assisting practicing healthcare ethicists in clarifying role expectations with those they work with; and helping inform developing professional practice standards. (shrink)

There is ongoing debate within the bioethics literature regarding to what extent (if any) it is ethically justifiable for doctors to engage in religious discussion with their patients, in cases where patients cite religious considerations as influencing their medical decision-making. In this paper, we concede that certain forms of religious discussion between doctors and patients are morally permissible (though not necessarily morally obligatory), insofar as patients’ religious beliefs may comprise an important part of their overall wellbeing and can influence their (...) medical decisions. However, we argue that it is not morally permissible for doctors to engage in substantive religious discussion with their patients, beyond simply inquiring about the patient's values (which may include their religious values) or referring patients to a chaplain or religious figure for further discussion. In support of this claim, we put forward two key arguments which have remained relatively unaddressed in the current debate. First, we argue that it is not practical for doctors to engage in substantive religious discussion with patients, and hence it cannot be morally obligatory for them to do so. Second, we argue that, while doctors might have a professional duty to ensure that their patient's religious interests (if any) are addressed, this does not entail that doctors themselves are the ones who should directly address these interests. Along the way, we anticipate and respond to some possible objections to these two key arguments. (shrink)