Bronwen Morrell

Why might people donate tissue for cancer research? Insights from organ/tissue/blood donation and clinical research.

Little is known about why patients with cancer do or do not donate their biopsied/cancerous tissue to research. A review of the literature on motivations to participate in clinical research and to donate tissues/organs for therapeutic use may provide some insights relevant to tumour banking research. While more research is necessary, a better understanding of the factors that motivate patients to give or refuse consent to tumour banking may ultimately improve consent practices, public trust and donation rates.

Cancer as Rubbish: Donation of Tumor Tissue for Research

Tissue banking (or biobanking), thought by many to be an essential form of medical research, has raised a number of ethical issues that highlight a need to understand the beliefs and values of tissue donors, including the motivations underlying consent or refusal to donate. Data from our qualitative study of the legal, social, and ethical issues surrounding tumor banking in New South Wales, Australia, show that participants’ attitudes to donation of tumor tissue for research are partially captured by theories of weak altruism and social exchange. However, we argue that the psychological rewards of value transformation described by Thompson’s rubbish theory provide additional insights into participants’ attitudes to tumor donation. We believe our data provides sufficient justification for an approach to regulation of tumor banking that is aimed at fostering a relationship based on the notions of virtuous reassignment and social exchange.

Medicine, the media and political interests

The news media is frequently criticised for failing to support the goals of government health campaigns. But is this necessarily the purpose of the media? We suggest that while the media has an important role in disseminating health messages, it is a mistake to assume that the media should serve the interests of government as it has its own professional ethics, norms, values, structures and roles that extend well beyond the interests of the health sector, and certainly beyond those of the government. While considerable attention has been given to the ways in which uncritical publication of industry perspectives by news media can negatively impact on public understandings of health and health behaviours, we would argue that it is equally important that journalists not become the ‘lapdogs’ of government interests. Further, we suggest that the interests of public health may be served more by supporting the ongoing existence of an independent media than by seeking to overdetermine its purpose or scope.

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.

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 publics 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 2 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 stakeholders and have their intended effect on the quality of journalism and the actions of news consumers.

Consent: a need for guidelines to reflect local considerations.

As you point out in your Editorial (Nature 460, 933; 2009) on the distribution of human cell lines, withholding scientific material from the broader research community contravenes the basic norms of science. We do not believe, however, that standard international consent guidelines for donors are the solution to this problem and suggest that these should instead be devised on a local scale in collaboration with ethics committees to facilitate tissue distribution. Far from research being “hindered by restrictions from donors” as you suggest, people are generally willing to donate tissue for research, and even to give open-ended consent to unspecified future applications. This willingness is underpinned by donors’ faith in medical research and in their right to protection and confidentiality; the assumption is that their tissue will be used only for ‘ethical’ research. But problems can arise, for example over whether consent covers the proposed usage (at present there are many different models of consent, ranging from specific to general) and when and how tissue should be discarded (K. Aalto-Setala et al. PLoS Biol. 7, e1000042; 2009). The answers may not always be obvious, and ethics committees (in collaboration with donors or their representatives) need to take into account the kind of tissue involved as well as the demographics and potential vulnerability of the donor or donor community, to judge the acceptability of the research proposal.

Policies and practices on competing interests of academic staff in Australian universities.

Objectives: To document the existence and provisions of Australian universities’ policies on the competing interests of academic staff and university practices in recording, updating and making these declarations publicly accessible.

The perils of a vanishing cohort: A study of social comparisons by women with advanced ovarian cancer

Objective: To examine the role social comparisons play in the experience of ovarian cancer patients and to consider the implications this may have for provision of supportive care services for ovarian cancer patients.

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.

The Power of Knowledge, Responses to Change, and the Gymnastics of Causation

This issues explores, inter alia, and in its usual diversity, themes of disclosure, knowledge, response to change, and death causation. We have nine Original Research articles, five Critical Perspectives, one Critical Response, and one Book Review, as well as two Guest Editorials, and the usual Recent Developments. Amongst the Original Research and Critical Perspectives articles we have authors fromArgentina, Australia, China, Italy, Jordan, The Netherlands, the United Kingdom, and the United States. The articles run across clinical ethics, research ethics, and law and address participation in research (Zhang, Huang, and Chen 2018; Tamariz et al. 2018), conflicts of interest (Jacmon 2018), knowledge production (Soofi 2018), academic misconduct (Penders 2018), assisted reproduction (Lima 2018; Shahvisi 2018; Smith and TaylorSands 2018), predictive genetic testing (Manzini andVears 2018), family-centred care (Borgan et al. 2018), assisted dying (Richards and Coggon 2018; Duckett 2018), vaccination for drugs of dependence (Carfora et al. 2018), asylum seekers (Essex and Isaacs 2018), and models of clinical decision-making (Parker et al. 2018). They raise issues relating to a number of different vulnerable populations including research participants (Zhang, Huang, and Chen 2018; Jacmon 2018; Tamariz et al. 2018), children (present and future)(Lima 2018; Manzini and Vears 2018; Shahvisi 2018; Smith and Taylor-Sands 2018), racial and ethnic minorities (Tamariz et al. 2018), illicit drug users (Carfora et al. 2018), asylum seekers (Essex and Isaacs 2018), and patients who have run out of treatment options (Soofi 2018). David Shaw (2018), a member of our Editorial Board, wheels out the trolley problem in a fictitious ethics committee deliberation on thought experiments. The thought finds a thinker, and then the horrified committee Bthought polices^ itself because the thought cannot be held or even contemplated. So in a sense, the committee destroys its own conversation by being unable to have it. Bryan Magee (1997), in his wonderful philosophical memoir Confessions of a Philosopher shares his experience of post-war Oxford language philosophy and logical positivism as a straightjacket that he felt stifled enquiry and curiosity, by making it hard to say anything without being shot down in flames. Queen Elizabeth I famously said she had Bno desire to make windows into men’s souls.^ So do we dare give voice to dangerous thoughts? Or are they hidden or unconsciously present in the room, to do their work in unspoken Bioethical Inquiry (2018) 15:1–4 https://doi.org/10.1007/s11673-018-9849-6