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. This expectation is largely implicit, however, and when it is not met, this can give rise to trouble that can have adverse consequences for patients, physicians, and relationships within the clinic. We revisit the concept of the sick role to formalize this new role expectation, and we argue that “informed” consent is a process that is usually incomplete, despite trappings and assumptions that help to create the illusion of completeness. Keywords Informed consent; Sick role; Bioethics; Sociology, Medical; Bone marrow transplantation; Qualitative research; AustraliaNHMR

Increasing diversity at the cost of decreasing equity? Issues raised by the establishment of Australia's first religiously affiliated medical school,

Medical education in Australia is about to undergo major changes, with the founding of six new medical schools, including the first private medical school and the first religiously affiliated medical school in Australia. The establishment of medical schools at Bond University on the Gold Coast, Queensland, and the University of Notre Dame in Fremantle, Western Australia, are particularly noteworthy developments. A recent article in the Journal claimed the new medical schools will foster diversity and are commited to fill “particular workforce needs”. 1 We argue that increasing the range of options for medical education is not an unquestionable good, as it may threaten academic freedom and equity in medical education as well as just provision of health care. This article aims to stimulate awareness, conversation and debate on these issues, not only within the medical community but in the wider Australian community

Beyond rhetoric in debates about the ethics of marketing prescription medicines to consumers: The importance of vulnerability in people, situations and relationships

Background This article examines community responses to the marketing of prescription medicines. Historically, debates about such marketing have focused on alleged unscrupulousness of pharmaceutical companies and on the quality of information provided. 2 Methods Six focus groups were conducted in Sydney, Australia, three with older and three with younger community members. Analysis examined interactions between group members, the positions participants took up, conflicting arguments, and explanations for variation. Results Participants argued specifically rather than generally about consumer marketing of medicines. Neither the moral purpose of corporations nor the quality of information in advertisements was particularly important. Instead, pharmaceutical marketing was assessed in relation to vulnerabilities that existed in individual consumers, in doctors, in the contexts of illness and as a result of medications being potentially dangerous. Conclusions The critical ethical issue in prescription medicine marketing may be the existence of vulnerabilities and the responsibilities they may generate. We outline three possible policy responses suggested by these participants. Key words: DTCA, direct-to-consumer advertising, marketing, vulnerability, doctor-patient relationship, drug industryAustralian National Health and Medical Research Council (NHMRC) Grant 457497

Rules of Engagement: Journalists’ attitudes to industry influence in health news reporting.

Health-related industries use a variety of methods to influence health news, including the formation and maintenance of direct relationships with journalists. These interactions have the potential to subvert news reporting such that it comes to serve the interests of industry in promoting their products, rather than the public interest in critical and accurate news and information. Here we report the findings of qualitative interviews conducted in Sydney, Australia, in which we examined journalists’ experiences of, and attitudes towards, their relationships with health-related industries. Participants’ belief in their ability to manage industry influence and their perceptions of what it means to be unduly influenced by industry raise important concerns relating to the psychology of influence and the realities of power relationships between industry and journalists. The analysis also indicates ways in which concerned academics and working journalists might establish more fruitful dialogue regarding the role of industry in health-related news and the extent to which increased regulation of journalist-industry relationships might be needed.NHMR

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 analysis presented here – which is part of a larger study of industry-journalist relationships – draws on in-depth, semi-structured interviews with representatives of health-related industries in Australia to inductively examine their perceptions of power relations between industry and journalists. Participants painted a picture in which journalists, rather than themselves, were in a position to control the nature, extent, and outcome of their interactions with industry sources. Our results resonate with the concept of “mediatisation” as it has been applied in the domain of political reporting. It appears that, from the perspective of industry representatives, the imposition of media logic on health-related industries may inappropriately influence the information that the public receives about health-related products. KEYWORDS: journalism, ethics, power, public health, qualitative researchNHMR

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. Commentators have proposed two related approaches to protecting the public from potential harms arising from industry-journalist interactions: greater transparency and external regulation. To date, few empirical studies have examined stakeholders’ views of industry-journalist relationships and how these should be managed. We conducted interviews with 13 journalists and 12 industry employees, and two focus groups with consumers. Our findings, which are synthesised here, provide empirical support for the need for greater transparency and regulation of industry-journalist relationships. Our findings also highlight several likely barriers to instituting such measures, which will need to be overcome if transparency and regulation are to be accepted by stakeholder and have their intended effect on both the quality of journalism and the actions of news consumers.NHMR

Decision Making in a Crowded Room: The Relational Significance of Social Roles in Decisions to Proceed With Allogeneic Stem Cell Transplantation

Researchers studying health care decision making generally focus on the interaction that unfolds between patients and health professionals.Using the example of allogeneic bone marrow transplant, in this article we identify decision making to be a relational process concurrently underpinned by patients’ engagement with health professionals, their families, and broader social networks. We argue that the person undergoing a transplant simultaneously reconciles numerous social roles throughout treatment decision making, each of which encompasses a system of mutuality, reciprocity, and obligation. As individuals enter through the doorway of the consultation room and become “patients,” they do not leave their roles as parents, spouses, and citizens outside in the hallway. Rather, these roles and their relational counterpoints—family members, friends, and colleagues—continue to sit alongside the patient role during clinical interactions. As such, the places that doctors and patients discuss diagnosis and treatment become “crowded rooms” of decision making.From NHMRC 457439

Widening the debate about conflict of interest: addressing relationships between journalists and the pharmaceutical industry

The phone-hacking scandal that led to the closure of the News of the World newspaper in Britain has prompted international debate about media practices and regulation. It is timely to broaden the discussion about journalistic ethics and conduct to include consideration of the impact of media practices upon the population’s health. Many commercial organizations cultivate relationships with journalists and news organizations with the aim of influencing the content of health-related news and information communicated through the media. Given the significant influence of the media on the health of individuals and populations, we should be alert to the potential impact of industry-journalist relationships on health care, health policy and public health. The approach taken by the medical profession to its interactions with the pharmaceutical industry provides a useful model for management of industry influence. Keywords Journalism, mass media, pharmaceutical industry, conflict of interest, ethics, media regulationNHMR

Health journalists’ perceptions of their professional roles and responsibilities for ensuring the veracity of reports of health research

Health industries attempt to influence the public through the news media and through their relationships with expert academics and opinion leaders. This paper reports the results of a study of journalists’ perceptions of their professional roles and responsibilities with regard to relationships between industry and academia. Journalists believed that responsibility for the validity of their reports rested with academics and systems of peer review. However this fails to account for the extent these interactions and the failures of peer review. Health journalists’ retention of a critical stance regarding industry-academia relationships will include advocacy for and adoption of mandatory reporting of these relationships