Journal of Bioethical Inquiry, Volume 5, Number 4 (December 2008)

Editorials

Editorial

Kate Cregan

Recent Developments

Recent Developments in Law

Cameron Stewart

Original Research

Bioethics, Disability, and the Good Life: Remembering Christopher Newell, 1964–2008

Gerard Goggin
The untimely passing of Reverend Canon Dr Christopher Newell, AM, came as a shock to many in the bioethics world. As well as an obituary, this article notes a number of important themes in his work, and provides a select bibliography. Christopher’s major contribution to this field is that he was one of a handful of scholars who made disability not only an acceptable area of bioethics—indeed a vital, central, fertile area of enquiry. Crucially Christopher emphasised that where we do ethics is actually in everyday life—while we mourn his passing, his rich work and example will continue to inspire bioethical inquiry.

Embodied Subjects and Fragmented Objects: Women’s Bodies, Assisted Reproduction Technologies and the Right to Self-Determination

Jyotsna Agnihotri Gupta and Annemiek Richters
This article focuses on the transformation of the female reproductive body with the use of assisted reproduction technologies under neo-liberal economic globalisation, wherein the ideology of trade without borders is central, as well as under liberal feminist ideals, wherein the right to self-determination is central. Two aspects of the body in western medicine—the fragmented body and the commodified body, and the integral relation between these two—are highlighted. This is done in order to analyse the implications of local and global transactions in women’s reproductive body parts for their right to self-determination and individual agency and what this means for their embodiment. We conclude by exploring whether women can become embodied subjects by exercising their proprietary right to their bodies through directing technology to achieve their own goals, while at the same time being fragmented into parts and losing their personhood and bodily integrity.

Reconciliation and Australian Indigenous Health in the 1990s: A Failure of Public Policy

Andrew Gunstone
In 1991, the Australian Commonwealth Parliament unanimously passed the Council for Aboriginal Reconciliation Act 1991. This Act implemented a 10-year process that aimed to reconcile Indigenous and non-Indigenous people by the end of 2000. One of the highest priorities of the reconciliation process was to address Indigenous socio-economic disadvantage, including health, education and housing. However, despite this prioritising, both the Keating Government (1991–1996) and the Howard Government (1996–2000) failed to substantially improve socio-economic outcomes for Indigenous people over the reconciliation decade. In this paper, I examine one of the most prominent socio-economic areas, that of Indigenous health. First, I discuss the appalling levels of Indigenous health throughout the reconciliation decade by analysing a number of health indicators, including life expectancy, infant mortality rate, standard mortality ratios, hospital rates and health Infrastructure. This analysis reveals significant and often worsening disadvantage in these health indicators. Second, I analyse a number of policies and programs concerning Indigenous socio-economic disadvantage that were developed by Commonwealth Governments in the 1990s. I argue that these policies and programs largely failed to address Indigenous socio-economic disadvantage. I also discuss alternative policies and programs that could reduce the significant levels of socio-economic disadvantage suffered by Indigenous people.

Futility by Any Other Name: The Texas 10 Day Rule

Geoffrey Miller
This commentary examines the ethics and law in the United States as they relate to the foregoing of life sustaining treatment when such treatment is deemed medically inappropriate. In particular the article highlights the procedural approach when there is disagreement between physicians and surrogates or patients as exemplified in Texas Law. This approach, although worthy in concept, may in practice invite opposition and dissatisfaction as it may be perceived as coercive and pitting the weak against powerful adversaries and interests, in addition to discouraging the exercise of professional virtues. Too inflexible an approach erodes trust, and furthermore the Texas law allows hospital ethics committees to move from an advisory nonjudgmental role to a quasi-legal court with real legal power but no credentialing or oversight.

Exploring Scientific Misconduct: Isolated Individuals, Impure Institutions, or an Inevitable Idiom of Modern Science?

Benjamin K. Sovacool
This paper identifies three distinct narratives concerning scientific misconduct: a narrative of “individual impurity” promoted by those wishing to see science self-regulated; a narrative of “institutional impropriety” promoted by those seeking greater external control of science; and a narrative of “structural crisis” among those critiquing the entire process of research itself. The paper begins by assessing contemporary definitions and estimates of scientific misconduct. It emphasizes disagreements over such definitions and estimates as a way to tease out tension and controversy over competing visions of scientific research. It concludes by noting that each narrative suggests a different approach for resolving misconduct, and that the difference inherent in these views may help explain much of the discord concerning unethical behavior in the scientific community.

Challenges of Macro-Ethics: Bioethics and the Transformation of Knowledge Production

Hub Zwart
One interesting aspect of the Hwang-case has been the way in which this affair was assessed by academic journals such as Nature. Initially, Hwang’s success was regarded as evidence for the detrimental effects of research ethics, slowing down the pace of research in Western countries. Eventually, however, Hwang’s debacle was seen as evidence for the importance of ethics in the life sciences. Ironically, it was concluded that the West maintains its prominence in science (as a global endeavour) precisely because it has its ethics in place. Bioethics was now seen as an indispensable part of quality control. In this article, I will claim that the Hwang case rather reveals that there is no reason for complacency and that there are substantial challenges awaiting us. They have to do with major transformations in the way knowledge is produced and research in the life sciences is conducted (such as the increase in pace and scale, globalisation and the growing importance of ICT and bioinformation). These transformations call for a different kind of bioethics. The focus must shift from duties of autonomous researchers concerning visible research subjects (“micro-ethics”) to responsibilities of institutionalised research networks in managing and processing large amounts of bioinformation (“macro-ethics”). Concepts such as transparency, reliability and benefit-sharing will become more important than concepts such as informed consent. Basically, it is a resurgence of the tension between the Kantian and the Hegelian view of ethics. The contours of macro-ethics will be elaborated notably as it is emerging in bioethical debates over biobanking and genetic databanks.

The Ethics of Research on Less Expensive, Less Effective Interventions: A Case for Analysis

Merle Spriggs
The Kennedy Krieger lead paint study is a landmark case in human experimentation and a classic case in research ethics. In this paper I use the lead paint study to assist in the analysis of the ethics of research on less expensive, less effective interventions. I critically evaluate an argument by Buchanan and Miller who defend both the Kennedy Krieger lead paint study and public health research on less expensive, less effective interventions. I conclude that Buchanan and Miller’s argument is flawed but that does not mean that research designed to find less effective interventions cannot be justified in some situations. Based on my analysis, I suggest questions to ask when considering such research and I offer some principles to guide us. In the process, light is shed on the various debates and issues raised by the lead paint study; e.g. standards of care, researchers’ responsibilities to research subjects, the distinction between treatment and research and the question of what it is that legitimizes public health research.

Guidelines for Community-Based Ethics Review of Children’s Science Fair Projects

Martin Tolich
Low-level community based ethics committees staffed by teachers, parents and community representatives can readily review children’s science fair projects subject to the revision of two core assumptions currently governing children’s Science Fairs. The first part of the paper recasts the New Zealand Royal Society guidelines from its primary emphasis on risk to a new assumption, without benefit there can be no risk. Equally, this revision gives more prominence to the participant information sheet, allowing it to act as a quasi application form which provides ethical transparency between student researchers, participants and a community based ethics committee. A second core assumption, more accurately labeled a cult of originality, produces a random, open-ended array of student topics taking ethics review beyond the confidence level of most community based ethics review committees. This paper reins in Science Fair coordinators recommending they make community level ethics review more manageable by providing a list of preapproved topics for those students wanting to conduct research involving human participants. These revised assumptions create a workable division of labour. Teachers’ preapproved topics involving human participants are more likely to be low risk, permitting community level ethics review to focus primarily on two aspects of the minimization of harm: first, for all participants, especially those with diminished autonomy, and second, for the child researchers themselves, as some participants may be unknown to the student. These revised assumptions make science and ethics more accessible to public education thus demonstrating how Science Fairs can lead students and the community into better understanding the role and function that ethics has in all scientific research human participants.

Reviews

Naked on the Inside

Christopher Jordens

Case Studies

Republication: Professional Justice?

Malcolm Parker
This article was originally published in the Journal of Bioethical Inquiry 5(2–3): 227, doi:10.1007/s11673-008-9098-1. It is reprinted here for the sake of coherence.

Response

Margaret Kay

Response

Hilton Koppe

In That Case: Sunscreen Safety

Thomas Faunce