Pragmatic pluralism: Mutual tolerance of contested understandings between orthodox and alternative practitioners in autologous stem cell transplantation.

High-dose chemotherapy and autologous stem cell transplantation (ASCT) is used to treat some advanced malignancies. It is a traumatic procedure, with a high complication rate and significant mortality. ASCT patients and their carers draw on many sources of information as they seek to understand the procedure and its consequences.

Response-The Road Less Travelled: Why did Miles Little Turn to Qualitative Research and Where Did This Lead?

Miles Little is an Australian surgeon, poet, and philosopher whose published work spans diverse topics in surgery, medicine, philosophy, and bioethics. In 1974 he co-authored a survey that included an analysis of interviews conducted with amputees. This was his first foray into qualitative research.

Liminality: A major category of the experience of cancer illness.

Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: (1) the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the presence or absence of persistent or recurrent disease; (2) a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and (3) a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study.

Discourse Communities and the Discourse of Experience.

Discourse communities are groups of people who share common ideologies, and common ways of speaking about things. They can be sharply or loosely defined. We are each members of multiple discourse communities.

Psychedelic-assisted psychotherapy for the treatment of major depression: a synthesis of phenomenological explanations.

Psychedelic-assisted Psychotherapy (PAP) combines the use of psychedelic compounds, such as psilocybin, with psychotherapy. PAP has shown some promise as a novel treatment for Major Depressive Disorder (MDD), and empirical research suggests that its efficacy turns on the altered states induced by psychedelic compounds. In this paper we draw on the literature of phenomenology to explain the therapeutic potential of psychedelic experiences.

Imagining and Preparing for the Aftermath of the COVID-19 Pandemic: A Justification for Taking Caring Responsibilities into Consideration when Allocating Scarce Resources.

Various models have been used to "emplot" our collective experience of the COVID-19 pandemic, including the epidemiological curve, threshold models, and narrative. Drawing on a threshold model that was designed to frame resource-allocation decisions in clinical care, I offer an ethical justification for taking caring responsibilities into consideration in such decisions during pandemics. My basic argument is that we should prioritize the survival of patients with caring responsibilities for similar reasons we should prioritize the survival of healthcare professionals.

An Ethics Framework for Making Resource Allocation Decisions Within Clinical Care: Responding to COVID-19.

On March, 24, 2020, 818 cases of COVID-19 had been reported in New South Wales, Australia, and new cases were increasing at an exponential rate. In anticipation of resource constraints arising in clinical settings as a result of the COVID-19 pandemic, a working party of ten ethicists (seven clinicians and three full-time academics) was convened at the University of Sydney to draft an ethics framework to support resource allocation decisions. The framework guides decision-makers using a question-and-answer format, in language that avoids philosophical and medical technicality.

Mind the gap: An empirical study of post-trial access in HIV biomedical prevention trials.

The principle of providing post-trial access for research participants to successful products of that research is widely accepted and has been enshrined in various declarations and guidelines. While recent ethical guidelines recognise that the responsibility to provide post-trial access extends to sponsors, regulators and government bodies as well as to researchers, it is the researchers who have the direct duty of care to participants. Researchers may thus need to act as advocates for trial participants, especially where government bodies, sponsors, and regulatory bodies have complex interests vested in decisions about whether or not new interventions are made available, how, and to whom.

Part of the fabric and mostly right: an ethnography of ethics in clinical practice.

Objectives: To describe how ethics is practised in a health care setting, and to ascertain whether there was interest in establishing clinical ethics support services.

Design And Setting: Observations and interviews undertaken between April and November 2012 in a large NSW urban hospital with newborn care, maternity and oncology departments and analysed by coding and categorising the data.

Main Outcome Measures: Key themes in the participants' attitudes to professional ethics were identified.

Religious Perspectives on Human Suffering: Implications for Medicine and Bioethics.

The prevention and relief of suffering has long been a core medical concern. But while this is a laudable goal, some question whether medicine can, or should, aim for a world without pain, sadness, anxiety, despair or uncertainty. To explore these issues, we invited experts from six of the world's major faith traditions to address the following question.

Managing ethical issues in patient care and the need for clinical ethics support.

Objective: To investigate the range, frequency and management of ethical issues encountered by clinicians working in hospitals in New South Wales (NSW), Australia.

Methods: A cross-sectional survey was conducted of a convenience sample of 104 medical, nursing and allied health professionals in two NSW hospitals.

Results: Some respondents did not provide data for some questions, therefore the denominator is less than 105 for some items.

Contextualising professional ethics: the impact of the prison context on the practices and norms of health care practitioners.

Health care is provided in many contexts-not just hospitals, clinics, and community health settings. Different institutional settings may significantly influence the design and delivery of health care and the ethical obligations and practices of health care practitioners working within them. This is particularly true in institutions that are established to constrain freedom, ensure security and authority, and restrict movement and choice.

Knowledge, beliefs, and decisions of pregnant Australian women concerning donation and storage of umbilical cord blood: a population-based survey.

Background: Many women giving birth in Australian hospitals can choose to donate their child's umbilical cord blood to a public cord blood bank or pay to store it privately. We conducted a survey to determine the proportion and characteristics of pregnant women who are aware of umbilical cord blood (UCB) banking and who have considered and decided about this option. The survey also sought to ascertain information sources, knowledge, and beliefs about UCB banking, and the effect of basic information about UCB on decisions.

Power and control in interactions between journalists and health-related industries: the view from industry.

The mass media is a major source of health information for the public, and as such the quality and independence of health news reporting is an important concern. Concerns have been expressed that journalists reporting on health are increasingly dependent on their sources--including representatives of industries responsible for manufacturing health-related products--for story ideas and content. Many critics perceive an imbalance of power between journalists and industry sources, with industry being in a position of relative power, however the empirical evidence to support this view is limited.

The work of living with a rare cancer: multiple myeloma.

Aim: To report findings from a qualitative study of the experiences of long-term survivors of multiple myeloma.

Background: Multiple Myeloma is a malignant disease of the bone marrow. Until recently, it was rapidly fatal.

Views of health journalists, industry employees and news consumers about disclosure and regulation of industry-journalist relationships: an empirical ethical study.

Bioethicists and policymakers are increasingly concerned about the effects on health journalism of relationships between journalists and private corporations. The concern is that relationships between journalists and manufacturers of medicines, medical devices, complementary medicines and food can and do distort health reporting. This is a problem because health news is known to have a major impact on the public's health-related expectations and behaviour.

Growing up with cancer: accommodating the effects of cancer into young people's social lives.

Adolescence and young adulthood are transitional periods of rapid and dramatic personal change. Few events can cause as unpredictable and challenging alterations to this process as the onset of a serious illness, such as cancer. Although we know much about the physical and psychological consequences of having cancer at this time, we know little about the effect of cancer on young people's relationships.

Religious perspectives on the use of psychopharmaceuticals as an enhancement technology.

The use of psychopharmaceuticals as an enhancement technology has been the focus of attention in the bioethics literature. However, there has been little examination of the challenges that this practice creates for religious traditions that place importance on questions of being, authenticity, and identity. We asked expert commentators from six major world religions to consider the issues raised by psychopharmaceuticals as an enhancement technology.

Trouble in the gap: a bioethical and sociological analysis of informed consent for high-risk medical procedures.

Concerns are frequently raised about the extent to which formal consent procedures actually lead to "informed" consent. As part of a study of consent to high-risk medical procedures, we analyzed in-depth interviews with 16 health care professionals working in bone-marrow transplantation in Sydney, Australia. We find that these professionals recognize and act on their responsibility to inform and educate patients and that they expect patients to reciprocate these efforts by demonstrably engaging in the education process.

"Good mothering" or "good citizenship"?

Umbilical cord blood banking is one of many biomedical innovations that confront pregnant women with new choices about what they should do to secure their own and their child's best interests. Many mothers can now choose to donate their baby's umbilical cord blood (UCB) to a public cord blood bank or pay to store it in a private cord blood bank. Donation to a public bank is widely regarded as an altruistic act of civic responsibility.