Journal of Bioethical Inquiry, Volume 7, Number 3 (September 2010)
Letters to the Editor
Eliane Pfister and Nikola Biller-Andorno
Glen I. Spielmans and Peter I. Parry
Cameron Stewart, John Coggon, Bill Madden, and Tina Cockburn
Lennard Davis’s “Biocultural Critique” of the alleged certainty of diagnosis (Davis Journal of Bioethical Inquiry 7:227−235, 2010) makes errors of fact concerning psychiatric diagnostic categories, misunderstands the role of power in the therapeutic relationship, and provides an unsubstantiated and vague alternative to the management of psychological distress via a conceptually outdated model of the relationships between physical and psychological disease and illness. This response demonstrates that diagnostic knowledge vouchsafes legitimate power to physicians, and via them relief to patients who suffer from psychological distress. The history of medicine and psychiatry demonstrates that psychiatric diagnosis shares many features with physical diagnosis, while there is also reason to believe that the two types will continue to be distinct in some respects. Diagnostic categories in psychological medicine, like those in physical medicine, are provisional, probabilistic, and often uncertain. These features do not detract from the dependence on diagnosis of therapeutic efficacy in both domains.
The Nobel Prize as a Reward Mechanism in the Genomics Era: Anonymous Researchers, Visible Managers, and the Ethics of Excellence
The Human Genome Project (HGP) is regarded by many as one of the major scientific achievements in recent science history, a large-scale endeavour that is changing the way in which biomedical research is done and expected, moreover, to yield considerable benefit for society. Thus, since the completion of the human genome sequencing effort, a debate has emerged over the question whether this effort merits to be awarded a Nobel Prize and if so, who should be the one(s) to receive it, as (according to current procedures) no more than three individuals can be selected. In this article, the HGP is taken as a case study to consider the ethical question to what extent it is still possible, in an era of big science, of large-scale consortia and global team work, to acknowledge and reward individual contributions to important breakthroughs in biomedical fields. Is it still viable to single out individuals for their decisive contributions in order to reward them in a fair and convincing way? Whereas the concept of the Nobel prize as such seems to reflect an archetypical view of scientists as solitary researchers who, at a certain point in their careers, make their one decisive discovery, this vision has proven to be problematic from the very outset. Already during the first decade of the Nobel era, Ivan Pavlov was denied the Prize several times before finally receiving it, on the basis of the argument that he had been active as a research manager (a designer and supervisor of research projects) rather than as a researcher himself. The question then is whether, in the case of the HGP, a research effort that involved the contributions of hundreds or even thousands of researchers worldwide, it is still possible to “individualise” the Prize? The “HGP Nobel Prize problem” is regarded as an exemplary issue in current research ethics, highlighting a number of quandaries and trends involved in contemporary life science research practices more broadly.
An Australian-Based Study on the Readability of HIV/AIDS and Type 2 Diabetes Clinical Trial Informed Consent Documents
Laura D. Buccini, Donald Iverson, Peter Caputi, and Caroline Jones
The aims of this study were to measure the readability of Australian based informed consent documents and determine whether informed consent readability guidelines have been established by Australian human research ethics committees (HRECs). A total of 20 informed consent documents, 10 HIV/AIDS and 10 type 2 diabetes, were measured for readability using the Simple Measure of Gobbledygook (SMOG) and Gunning Fog Index (Fog). Published guidelines and policy statements of the two local HREC who approved the 20 clinical trials under study where examined to identify whether they had any formal policies/guidelines on the readability of informed consent documents. The two HRECs were contacted via e-mail to also determine whether they utilised any informal readability standards or “rules of thumb” that may not have been mentioned in the published documents. The HIV/AIDS and type 2 diabetes informed consent documents were, on average, written at a grade 13 reading level. Formal readability standards had not been established by the two local HRECs, however, they did verify the use of informal rules for assessing readability of informed consent documents. Based on Australian literacy data, the majority of informed consent documents were written well beyond the reading ability of many Australians. Unreadable informed consent documents may result in patients rejecting trial participation altogether or conversely may result in their participating in a trial with inadequate consent. Therefore, a step toward reducing the complexity of informed consent documents may be to implement objective readability assessments into the human research ethics application and review process.
John Miles Little
To agonise is to “undergo great mental anguish through worrying about something,” according to the New Oxford Dictionary of English. I suggest that agonising in this sense is a fundamental response to any ethical dilemma. It has a long intellectual and literary lineage. In this essay, I agonise over the dilemmas posed by street beggars, their intrusiveness and their appeal to our intuitive sense of social duty. I explore the discomfort we may feel at their presence, and the value that discomfort may have for the evolution of our ethical lives.
Katrina A. Bramstedt
Katrina A. Bramstedt