Christopher F. C. Jordens

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. Discourse can colonize the members of discourse communities, taking over domains of thought by means of ideology. The development of new discourse communities can serve positive ends, but discourse communities create risks as well. In our own work on the narratives of people with interests in health care, for example, we find that patients speak of their illness experiences as victims of circumstance; policy makers construct adverse experiences and challenges as opportunities to be taken; health care workers speak from a mixed perspective, seeing themselves as both victims and opportunists depending on context. To be trapped within the discourse of a particular community is to put at risk the ability to communicate across discourses. Membership of a discourse community can impair the habit of critique, and deny opportunities for heteroglossic discourse. Privileging critique as a mode of discourse perhaps might define the ethical community, suggesting that ethical community may be an antidote to the constraining effects of conventional discourse community.

From advance directives to advance care planning: current legal status, ethical rationales and a new research agenda

Abstract

Direct-to-consumer personal genome testing: ethical and regulatory issues that arise from wanting to ‘know’ your DNA

Direct‐to‐consumer personal genome testing (DTC‐PGT) screens a customers genome for the presence of single nucleotide polymorphisms that are reported to be associated with various diseases, disease risk factors and personal characteristics. The range of health risks covered by personal genome testing (PGT) includes cancer, heart disease, obesity, diabetes mellitus and osteoporosis. PGT also detects a range of other characteristics, such as alcohol ‘flush reaction’, eye colour, ear wax type and bitter taste perception. Information about ancestry and family history is also available. Although DTC‐PGT is still a relatively new enterprise, the technology has the potential for rapid expansion as it becomes more accessible to consumers who wish to obtain information about their genetic profile. This review provides an overview of the broader ethical and regulatory issues raised by personal genome tests that are marketed directly to the public, and that purport to provide information about health risks. We discuss the emergence of DTC‐PGT in Australia, and the possible regulatory responses that may be taken to manage it.

Establishing the role of pre-implantation genetic diagnosis with human leucocyte antigen typing: what place do “saviour siblings” have in paediatric transplantation?

Background: Not all children in need of a haematopoietic stem cell transplant have a suitable relative or unrelated donor available. Recently, in vitro fertilisation (IVF) with pre-implantation genetic diagnosis (PGD) for human leucocyte antigen (HLA) tissue typing has been used to selectively transfer an IVF embryo in order to produce a child who may provide umbilical cord blood for transplantation to an ill sibling. Such children are sometimes called “saviour siblings”. Objective: To examine the published clinical and epidemiological evidence relevant to the use of this technology, with the aim of clarifying those situations where IVF and PGD for HLA typing should be discussed with parents of an ill child. Design: A critical analysis of published literature on comparative studies of umbilical cord blood versus other sources of stem cells for transplantation; comparative studies of matched unrelated donor versus matched related donor transplantation; and the likelihood of finding an unrelated stem cell donor. Conclusion: IVF and PGD for HLA typing is only applicable when transplantation is non-urgent and parents are of reproductive age. Discussions regarding this technology may be appropriate where no suitable related or unrelated donor is available for a child requiring a transplant, or where no suitable related donor is available and transplantation is only likely to be entertained with a matched sibling donor. Discussion may also be considered in the management of any child lacking a matched related donor who requires a non-urgent transplant or may require a transplant in the future.

Direct-to-consumer advertising under the radar: the need for realistic drugs policy in Australia

Direct‐to‐consumer advertising of prescription medicines (DTCA‐PM) is currently banned in Australia. DTCA‐PM is thought to increase health‐care costs by increasing demand for drugs that are both expensive and potentially harmful. However, DTCA‐PM is occurring in Australia despite the current prohibition. We argue that successful regulation of the practice has been undermined as a result of changes brought about by the ongoing communications revolution, the increasing centrality of patient choice in medical decision‐making and the impossibility of drawing and maintaining a sharp distinction between information and advertising. The prohibition is further threatened by recent international trade agreements. These factors make DTCA‐PM inevitable and legislative and professional bodies need to acknowledge this to create a more effective health‐care policy.

How Good Is “Good Enough”? The Case for Varying Standards of Evidence According to Need for New Interventions in HIV Prevention

In 2010, randomized controlled trials (RCTs) of two different biomedical strategies to prevent HIV infection had positive findings. However, despite ongoing very high levels of HIV infection in some countries and population groups, it has been made clear by regulatory authorities that the evidence remains insufficient to support either product being made available outside of research contexts in the developing world for at least two years. In addition, prevention trials in endemic areas will continue to test new interventions against placebo. But the judgments of evidentiary standards are never value-neutral. Using the recent trials and their contexts as case studies, we examine the basis for these decisions, which will potentially delay access to scientific innovation to the people who are most urgently in need of it.

Religious Perspectives on Abortion and a Secular Response

This paper concerns the medical, religious, and social discourse around abortion. The primary goal of this paper is to better understand how seven of the world’s major religious traditions (Roman Catholic, Lutheran, Jewish, Islamic, Buddhist, Confucian, and Hindu) address abortion ‘in the clinic’. We do not aim to critique these commentaries but to draw out some of the themes that resonate through the commentaries and place these within complex social contexts. We consider the intersection of ontology and morality; the construction of women’s selfhood; the integration of religious beliefs and practices in a secular world. We suggest that for many women, religious doctrine may be balanced with secular logic as both are important and inextricably linked determinants of decision making about the termination of pregnancy.

Patient and family education in HSCT: improving awareness of respiratory virus infection and influenza vaccination. A descriptive study and brief intervention

To prevent respiratory virus (RV) infection after hematopoietic SCT (HSCT), patient and household members are advised to have annual influenza vaccinations and avoid symptomatic contacts. The object of this study was to measure and increase patient/household awareness of RV infection and preventive measures. We used a self-administered questionnaire before/after a 5-min educational module (2006–2007) and interviews with HSCT patients (2005–2007). The subjects were patients and their households attending pre-HSCT education in an Australian HSCT Unit. Outcome measures were awareness of RV infection post-HSCT and effective prevention strategies; household influenza vaccination on admission for HSCT. In all, 139 out of 205 (68%) participants completed both questionnaires. Baseline knowledge of RV infection risk was high; knowledge of prevention was low. Intervention increased awareness that influenza post-HSCT could be fatal or require intensive care (68–87%, P=0.003), knowledge of effective prevention strategies (41–78%, P<0.0001) including vaccination (11–58%, P<0.0001), and belief among family/friends (but not patients) that household vaccination reduces influenza risk post-HSCT (57–97%, P<0.0001 and 76–81%, P=0.2, respectively). Household vaccination at HSCT admission was 71% for attenders and 30% for non-participants (RR 2.38, 95% confidence interval (CI) 1.49–3.80, P<0.0001). We concluded that patient and family pre-HSCT education increases awareness of RV prevention strategies and household influenza vaccination.

‘Right’ way to ‘do’ illness? Thinking critically about positive thinking

Exhortations to ‘be positive’ accompany many situations in life, either as a general injunction or in difficult situations where people are facing pressure or adversity. It is particularly evident in health care, where positive thinking has become an aspect of the way people are expected to ‘do’ illness in developed society. Positive thinking is framed both as a moral injunction and as a central belief system. It is thought to help patients cope emotionally with illness and to provide a biological benefit. Yet, the meanings, expectations and outcomes of positive thinking are infrequently questioned and the risks of positive thinking are rarely examined. We outline some of the latter and suggest that health professionals should exercise caution in both ‘prescribing’ positive thinking and in responding to patients and carers whose belief systems and feelings of obligation rest on it.

Vulnerability in the Narratives of Patients and their Carers: Studies of Colorectal Cancer:

Vulnerability is susceptibility to any kind of harm, whether physical, moral or spiritual, at the hands of an agent or agency. It is related to disempowerment and loss of autonomy. It is also a relational category that appears repeatedly in the narratives of colorectal cancer patients and their carers. Although one conventionally associates vulnerability with being ill and needing health care, the practice of health care has its own vulnerabilities that emerge as important in the biographies of health care workers. Vulnerability needs to be recognized and negotiated in health care transactions. This article examines a process of ‘reading-for’ vulnerability, and suggests a classification of vulnerability, at least as it appears in the narratives of cancer patients and their carers. Methods of managing vulnerability are also examined and categorized. Reading for vulnerability brings insight into an important aspect of the health care process. Recognition of its importance should translate into changes in medical education and patient information.