Malcolm Parker

It is increasingly asserted that the disagreements of abstract principle between adversaries in the euthanasia debate fail to account for the complex, particular and ambiguous experiences of people at the end of their lives. A greater research effort into experiences, meaning, connection, vulnerability and motivation is advocated, during which the euthanasia 'question' should remain open. I argue that this is a normative strategy, which is felicitous to the status quo and further medicalises the end of life, but which masquerades as a value-neutral assertion about needing more knowledge.

SenilityCalled from pleasuresI go tap-tapping down an old man’s backdown the skin of eighty summers wastingon a rib-ladder closingon a history of heart and lungs.These narrowly contracting bags I find, proclaim“Today his chest is clear as yours or mine.”This is the news requiredas the tide of vigilancelaps his sheets each surfacing dawn.“He’s doing very well.”He leans his gaze to the voice dintingthe routine of his roombut slides the focal point towards infinitypast those gatheredto the motes of memoryto wherepinned in the windthrough their age and bondher sacrificial flags go flutteringbattered and fastened into the room’s cornerhinged haggard to his unhinging.In this too a workless son and centrelessclock-bound slaveto the incontinent brain and its seepage.Two tight-wire walkerswell talked out by nine each bed-wet daythe backyard hoist their prayer-wheel creaking.The sheets flap up the scent of their detentions.Time in its time will track them round their modest cornernovice at the f

The Australian Health Ethics Committee’s National Statement on Ethical Conduct in Research Involving Humans (1999) expanded the health and medical focus of preceding statements by including all disciplines of research. The Statement purports to promote a uniformly high ethical standard for this expanded range of research, and is endorsed by, inter alia, the Australian Academy of the Humanities, the Australian Academy of Science, and the Academy of Social Sciences in Australia.High ethical standards should apply to all research involving humans. However, uniformity in the review processes of disparate research endeavours is not a necessary condition for uniformly high ethical standards. Bringing the ethical review of all research under a model which has developed within the context of health and medical research ethics for over thirty years may be inappropriate and at times incoherent. The language, methods, nature and products of research in areas such as the Humanities are often very different from those of health, medical and other sciences.The Behavioural and Social Sciences Ethics Review Committee at The University of Queensland (UQ) had, since the mid-1980s, considered that the guidelines of the time did, in fact, cover all aspects of human experimentation. We describe the ways in which this position was implemented, how issues raised by the new wording in the National Statement have been recently managed by UQ’s research ethics committees, and point to outstanding questions.

Clinical geneticists are increasingly confronted with ethical tensions between their responsibilities to individual patients and to other family members. This paper considers the ethical implications of a “familial” conception of the clinical genetics role. It argues that dogmatic adherence to either the familial or to the individualistic conception of clinical genetics has the potential to lead to significant harms and to fail to take important obligations seriously.Geneticists are likely to continue to be required to make moral judgments in the resolution of such tensions and may find it useful to have access to ethics training and support

A crescendo of panting to her stiff-lunged yearspressed in on her for three days and a bit before the succumbingno word could be wedged between gasps.A knife twist in her life’s two year tail two years’witness to others’ ministerings at her flesh-raw chestturned outward to the airenforced fluency in the language of lint.From nests of treason in her breastat night the insurgency pushed outinto the bloodlinesoutriders of a black hostthe dreadful propaganda of cellsbridgeheads locked down in bone and braina Reichstag fire flowering in her backherstory crumblingmidnight dominoes along her spine.At the endat the panting postin the room curtained for deathher body spat and crackled with a foreign fevereven past the last breath and her eyes drying.In the bare room a malignant hum.When they came for her a thin smoke hung

The recently published BMA Guidelines on Withholding and Withdrawing Medical Treatment encourage a balance between deriving maximal benefit from medical treatment, and achieving as natural a death as possible in the circumstances. I argue that the concepts of burdensomeness, natural death and medicalised death are of greater fundamental importance than that of intention, and do not help constitute a moral distinction between withdrawal of treatment and active assistance to die. Nor should they continue to ground the corresponding legal distinction. In the situations of both treatment withdrawal and active assistance to die, disease causation, human agency and moral responsibility are related in the same way. In both situations, we can intend that a person die for the right reasons, based on a concern for natural death.However, the law is reluctant to impose positive obligations on people, in contrast to the protection of negative rights. For example, the Northern Territory’s Rights of the Terminally Ill Act (1996) provided for assisted death as a lawful exception to an otherwise unlawful act, rather than as an enforceable right like the right to refuse unwanted medical treatment. Nevertheless, that the enforceability of a positive right to assisted death is difficult to conceive, is itself the product of a particular historical/moral/religious frame of reference currently under deconstruction. Genuine natural death statutes would consolidate the important principles supported here, and could apply uniform safeguards to all death-hastening decisions.

Objectives To determine the role played by law in medical specialists9 decision-making about withholding and withdrawing life-sustaining treatment from adults who lack capacity, and the extent to which legal knowledge affects whether law is followed. Design Cross-sectional postal survey of medical specialists. Setting The two largest Australian states by population. Participants 649 medical specialists from seven specialties most likely to be involved in end-of-life decision-making in the acute setting. Main outcome measures Compliance with law and the impact of legal knowledge on compliance. Results 649 medical specialists (of 2104 potential participants) completed the survey (response rate 31%). Responses to a hypothetical scenario found a potential low rate of legal compliance, 32% (95% CI 28% to 36%). Knowledge of the law and legal compliance were associated: within compliers, 86% (95% CI 83% to 91%) had specific knowledge of the relevant aspect of the law, compared with 60% (95% CI 55% to 65%) within non-compliers. However, the reasons medical specialists gave for making decisions did not vary according to legal knowledge. Conclusions Medical specialists prioritise patient-related clinical factors over law when confronted with a scenario where legal compliance is inconsistent with what they believe is clinically indicated. Although legally knowledgeable specialists were more likely to comply with the law, compliance in the scenario was not motivated by an intention to follow law. Ethical considerations (which are different from, but often align with, law) are suggested as a more important influence in clinical decision-making. More education and training of doctors is needed to demonstrate the role, relevance and utility of law in end-of-life care.

The materials consist of a co-authored, peer-reviewed book, a co-authored, peer-reviewed book chapter, 30 single authored peer-reviewed journal papers, and 15 co-authored peer-reviewed journal papers, of which I was the lead author on 8 papers. There are 32 papers from Australasian journals, at least two of which are also regarded as international. 22 papers are published in international journals. The co-authored book was favourably described in his foreword by Justice Michael Kirby of the High Court of Australia. The refereed chapter is contained in an issue of the Australian Legal Monographs series. The papers constitute a body of work in Australasian and international contexts in a field which is relatively new to academic achievement, broadly understood as philosophy of medicine, medical ethics and health law. The journals in which the papers are published include two of the most highly regarded bioethics journals in the world, Australia’s leading medical journal, the two leading world medical education journals, Australia’s leading journal for health and medical law, and the Torts Law Journal, an Australian journal which is recognized as one of the world’s leading journals in the field of tort law.

The Human Fertilisation and Embryology Authority have recently granted a licence to perform preimplanation genetic diagnosis (PGD) for the homozygous form of familial hypercholesterolaemia (FH), explicitly excluding its use for the heterozygous form. The grounds for such decisions centre on how serious a condition is thought to be as well as on the availability of effective treatment, and decisions are made on a case-by-case basis. The case for licensing homozygous FH is discussed and compared with other cases, and the case for making a distinction between PGD for homozygous and heterozygous FH is also examined. Testing for homozygous FH raises difficult issues of non-disclosure of results for heterozygous FH. Fears that this decision may represent a ‘slippery slope’ to more widespread testing are argued to be overstated

They enterin curves and stoopslimping and tappinga file of bare armscreased faces upliftedred eyelids poutingeyes curtained in cataract.The syringes are magazined at his hip.A pinch of skinin a chill autumn morninga stinging spreads outat the borders of shouldersthe grim supplicationfor all his attentionthe trembling smileon his remembering a name.Swabs spent in bucketsthe names all collecteda shifting and amblingacross the lawns to their liveson small porchesand in dim echoing cells.Washing his handsof the short easy morningthose bird-bone armsgrow stars of Davidin the injected whealsand the upturned headspull at his neckfor a sparklet of mercyhe prodding them downinto the frostfrom the stinking trainsat the point of more serious weaponry.They are a herdfanning out to their winding down daysdark-eyed ones shuffling blindto other deaths, gassed and limed

Plural democratic societies encourage and require the tolerance of disparate views. However, in relation to contentious areas like assisted reproductive technologies and destructive embryo research, tolerance is strained by the normative force of our fundamental beliefs about the moral status of early human forms. Yet in the continuing debates, spokespersons for different positions often do not concede all the implications of their arguments, may sidestep the real moral issues, and can fail to be clear about the foundations on which their arguments and policy advice ultimately rely. Guidelines and statutes can be rendered incoherent by the desire to balance and satisfy opposing values, rather than honestly reflecting the primary values they espouse.I call for greater clarity and honesty as these issues continue to be debated. An uncritical adherence to pluralism will encourage strategic obfuscation, but citizens of democracies need to be clearly informed about all the premises of opposing positions. Decisions about ethically and legally acceptable reproductive technologies ultimately depend on support for one metaphysical grounding at the expense of another. This should be acknowledged, as should its implications for policy.