Offering and Returning Secondary Findings in the Context of Exome Sequencing for Hearing Loss: Clinicians' Views and Experiences.

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.

When (if ever) may doctors discuss religion with their patients?

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.

Australian healthcare professionals' perspectives on the ethical and practical issues associated with genomic newborn screening.

Newborn bloodspot screening (NBS) is a successful public health initiative that seeks to identify serious, treatable medical conditions. The increasing use of genomic sequencing (GS) in a wide range of medical settings has reignited the discussion on whether GS can and should be integrated into NBS. Yet, the perspectives of healthcare professionals (HCPs) in Australia on the ethical and practical issues associated with the implementation of genomic newborn screening (GNBS) are underexplored.

Clinicians' Views and Experiences with Offering and Returning Results from Exome Sequencing to Parents of Infants with Hearing Loss.

Exome sequencing (ES) is an effective method for identifying the genetic cause of hearing loss in infants diagnosed through newborn hearing screening programs. ES has the potential to be integrated into routine clinical care, yet little is known about the experiences of clinicians offering this test to families. To address this gap, clinicians involved in a clinical study using ES to identify the cause of infants' hearing loss were interviewed to explore their experiences with offering and returning results to parents.

Bell v Tavistock: Why the Assent Model Is Most Appropriate for Decisions Regarding Puberty Suppression for Transgender and Gender Diverse Youth.

The decision of the High Court of England and Wales in Bell v Tavistock [2020] EWHC 3274 (Admin) raises important questions regarding best care for transgender and gender diverse (TGD) youth. In this section, I describe this case, its ruling, and its implications. The ruling is underpinned by the position that puberty suppression can only be ethically and legally permissible where the young person has not only provided their assent but has also been deemed capable to provide valid consent.

Selective Estrogen Receptor Modulators: A Potential Option For Non-Binary Gender-Affirming Hormonal Care?

Gender dysphoria describes the distress associated with having a gender identity that differs from one's birth-assigned sex. To relieve this distress, transgender, and gender diverse (henceforth, trans) individuals commonly undergo medical transition involving hormonal treatments. Current hormonal treatment guidelines cater almost exclusively for those who wish to transition from male to female or vice versa.

Should clinicians make chest surgery available to transgender male adolescents?

Bioethicists are increasingly engaged in considering the ethical issues associated with the care of transgender people. One such issue facing paediatric clinicians is requests for chest surgery from transgender male adolescents. For transgender young people who identify as male but have already progressed through the mid to late stages of puberty, hormone treatment will not reverse breast development.

"No One Stays Just on Blockers Forever": Clinicians' Divergent Views and Practices Regarding Puberty Suppression for Nonbinary Young People.

Purpose: Approximately half of transgender or gender diverse youth identify as gender nonbinary (not entirely or exclusively male or female). This study aimed to explore the views and practices of Australian clinicians working with transgender or gender diverse young people regarding puberty suppression for nonbinary youth, including requests for ongoing puberty suppression into adulthood.

Methods: Individual semistructured key informant interviews were conducted with 14 clinicians (medical and mental health) in Australia to explore their practices, views, and decision-making regarding puberty suppression for nonbinary youth.

Forever young? The ethics of ongoing puberty suppression for non-binary adults.

In this article, we analyse the novel case of Phoenix, a non-binary adult requesting ongoing puberty suppression (OPS) to permanently prevent the development of secondary sex characteristics, as a way of affirming their gender identity. We argue that (1) 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; (2) there are additional equity-based reasons to offer OPS to non-binary adults as a group; and (3) 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.

Long-term Puberty Suppression for a Nonbinary Teenager.

Many transgender and gender-diverse people have a gender identity that does not conform to the binary categories of male or female; they have a nonbinary gender. Some nonbinary individuals are most comfortable with an androgynous gender expression. For those who have not yet fully progressed through puberty, puberty suppression with gonadotrophin-releasing hormone agonists can support an androgynous appearance.

Ethical issues associated with solid organ transplantation and substance use: a scoping review.

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.

Drawing the line on in vitro gametogenesis.

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.

'Operating is the easy part': Surgeons' decision-making processes and responses to parental requests for elective paediatric appearance-altering facial surgery.

Some parents request elective appearance-altering facial surgery for their children for cosmetic, psychological and/or social reasons. These operations have attracted controversy in the bioethics literature. They are also the subject of professional guidance documents internationally, which leave much to individual practitioners' discretion.

Philosophy of Healthcare Ethics Practice Statements: Quality Attestation and Beyond.

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 (e.

What kinds of cases do paediatricians refer to clinical ethics? Insights from 184 case referrals at an Australian paediatric hospital.

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.

Should Surgery for Hypospadias Be Performed Before An Age of Consent?

Hypospadias is a relatively common genital condition in which the urethral opening forms on the underside of the penis, as opposed to at the tip of the glans. Patients with hypospadias are typically referred for surgery during infancy or early childhood. Recent evidence, however, indicates that many individuals with hypospadias do not experience the functional or psychosocial difficulties commonly attributed to the condition, and that surgical intervention for hypospadias carries substantial risk of adverse outcomes.

Conflicts Between Parents and Health Professionals About a Child's Medical Treatment: Using Clinical Ethics Records to Find Gaps in the Bioethics Literature.

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.

Overriding parents' medical decisions for their children: a systematic review of normative literature.

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.