Restricted treatments, inducements, and research participation

In this paper, I support the claim that placing certain restrictions on public access to possible new treatments is morally problematic under some exceptional circumstances. Very ill patients may find that all available standard treatments are unacceptable, either because they are ineffective or have serious adverse effects, and these patients may understandably be desperate to try something new even if this means stepping into the unknown. Faced with certain death, it is rational to want to try something new and to chance a dire outcome. Restricting possible new treatments to research trials may put these treatments scientifically, geographically or economically out of reach of these patients. For those who can get access, research restrictions could weaken, though not necessarily eliminate, the value of consent participants of such trials are able to give. Some participants may therefore be exploited for scientific purposes in the name of public interest. There are nonetheless compelling reasons for keeping some restrictive regulation in this area.     

Governance of indigenous policy in the neo-liberal age: indigenous disadvantage and the intersecting of paternalism and neo-liberalism as a racial project

Thinking about the governance of Indigenous poverty as an economic, social and racial project, the paper offers a way of understanding the dynamics of Indigenous policy formation in Australia in the neo-liberal age as what Howard Winant first coined a racial formation. In providing this analysis, this paper sits alongside a small, but growing body of work that reveals the racialized effects of governing through poverty in the neo-liberal age.     

Coercive treatment and autonomy in psychiatry

There are three lines of argument in defence of coercive treatment of patients with mental disorders: arguments regarding (1) societal interests to protect others, (2) the patients' own health interests, and (3) patient autonomy. In this paper, we analyse these arguments in relation to an idealized case, where a person with a mental disorder claims not to want medical treatment for religious reasons. We also discuss who should decide what in situations where patients with mental disorders deny treatment on seemingly rational grounds. We conclude that, in principle, coercive treatment cannot be defended for the sake of protecting others. While coercive actions can be acceptable in order to protect close family and others, medical treatment is not justified for such reasons but should be given only in the interest of patients. Coercive treatment may be required in order to promote the patient's health interests, but health interests have to waive if they go against the autonomous interests of the patient. We argue that non-autonomous patients can have reasons, rooted in their deeply-set values, to renounce compulsory institutional treatment, and that such reasons should be respected unless it can be assumed that their new predicaments have caused them to change their views.     

The medical decision-making process and the family: the case of breast cancer patients and their husbands

Objectives:  The objectives of the study were (1) to assess similarities and differences between breast cancer patients and their husbands in terms of doctor-patient/spouse relationships and shared decision making; and (2) to investigate the association between breast cancer patients and husbands in terms of preference of type of doctor, doctor-patient relationship, and shared decision making regarding medical treatment.
Method:  Fifty-seven women with breast cancer, and their husbands, completed questionnaires measuring doctor-patient/spouse relationships (paternalism, autonomy), and decision making regarding medical treatment.
Results:  Patients believe they have a key role in the medical decision-making process (93%) and that the participation of their husbands, and their agreement with the decision, is important (84% and 89%, respectively). Both breast cancer patients and their husbands prefer a shared decision-making process to paternalistic or autonomy-based approaches.
Conclusion:  In contrast to legal and bioethical approaches, which focus on the patient as the primary decision maker, this study reflects a practical recognition of the role of the breast cancer patient's husband in the decision-making process. It also reflects a relational rather than an individualistic perception of patient autonomy.     

SHOULD WE PREVENT NON‐THERAPEUTIC MUTILATION AND EXTREME BODY MODIFICATION?

In this paper, I discuss several arguments against non-therapeutic mutilation. Interventions into bodily integrity, which do not serve a therapeutic purpose and are not regarded as aesthetically acceptable by the majority, e.g. tongue splitting, branding and flesh stapling, are now practised, but, however, are still seen as a kind of 'aberration' that ought not to be allowed. I reject several arguments for a possible ban on these body modifications. I find the common pathologisation of body modifications, Kant's argument of duties to oneself and the objection from irrationality all wanting. In conclusion, I see no convincing support for prohibition of voluntary mutilations.     

Non-therapeutic modification and self-interest: reply to Schramme

In this article I reply to Thomas Schramme's argument that there are no good reasons for the prohibition of severe forms of voluntary non‐therapeutic body modification. I argue that on paternalistic assumptions there is, in fact, a perfectly good reason.     

IS PAYMENT A BENEFIT?

What I call ‘the standard view’ claims that IRBs should not regard financial payment as a benefit to subjects for the purpose of risk/benefit assessment. Although the standard view is universally accepted, there is little defense of that view in the canonical documents of research ethics or the scholarly literature. This paper claims that insofar as IRBs should be concerned with the interests and autonomy of research subjects, they should reject the standard view and adopt ‘the incorporation view.’ The incorporation view is more consistent with the underlying soft‐paternalist justification for risk‐benefit assessment and demonstrates respect for the autonomy of prospective subjects. Adoption of the standard view precludes protocols that advance the interests of subjects, investigators, and society. After considering several objections to the argument, I consider several arguments for the standard view that do not appeal to the interests and autonomy of research subjects.     

Misplaced Paternalism and other Mistakes in the Debate over Kidney Sales

Erik Malmqvist defends the prohibition on kidney sales as a justifiable measure to protect individuals from harms they have not autonomously chosen. This appeal to ‘group soft paternalism’ requires that three conditions be met. It must be shown that some vendors will be harmed, that some will be subject to undue pressure to vend, and that we cannot feasibly distinguish between the autonomous and the non‐autonomous. I argue that Malmqvist fails to demonstrate that any of these conditions are likely to obtain. His argument involves two common errors. First, he, like many, proceeds on a mistaken understanding of how to assess harm. What matters is not the balance of costs and benefits of vending, but a comparison of potential vendors’ welfare across two possible courses of action. Second, Malmqvist's concerns about third‐party pressure are predicated on an empirically unrealistic understanding of the operation of a regulated market. A widely underappreciated fact is that kidney sales will be relatively rare, and most who try to vend will be unable to. Because pressure on another to vend will not result in the desired outcome, few will exert it.     

Two kinds of physician‐assisted death

I argue that the concept ‘physician‐assisted suicide’ covers two procedures that should be distinguished: giving someone access to humane means to end his own life, and taking co‐responsibility for the safe and effective execution of that plan. In the first section I explain the distinction, in the following sections I show why it is important. To begin with I argue that we should expect the laws that permit these two kinds of ‘assistance’ to be different in their justificatory structure. Laws that permit giving access only presuppose that the right to self‐determination implies a right to suicide, but laws that permit doctors to take co‐responsibility may have to appeal to a principle of mercy or beneficence. Actually this difference in justificatory structure can to some extent be found in existing regulatory systems, though far from consistently. Finally I argue that if one recognizes a right to suicide, as Oregon and other American states implicitly do, and as the European Court of Human Rights has recently done explicitly, one is committed to permit the first kind of ‘assistance’ under some conditions.     

Paternalism and certitude

When paternalism is deemed morally justified, weak paternalism—which restricts itself to assisting the target of paternalism realize his own preferences—is the preferred (less problematic) alternative. In determining the appropriateness of weak paternalism, the level of certitude of the paternalist regarding the correctness of her assessment of the true preferences of the one-paternalized is obviously a crucial factor. Yet in the ethics of paternalism this parameter has escaped systematic treatment. This paper aims to initiate discussion on this indispensable consideration for weak paternalism. Analysing a real-life dilemma of paternalism in healthcare, the paper focuses on the theoretical question of how the paternalist can optimize her certitude by combining personal knowledge of the individual patient with population data on treatment refusal/consent of patients facing similar decisions. The paper presents an outline of a decision-making scheme that can be valuable in medical ethics and beyond.