Issues 19(1): Symposium–The Legacy of Miles Little

This edition of the Journal of Bioethical Inquiry carries a symposium compiled in honour of the work of a distinguished pioneer of Australian bioethics: Miles Little. As the symposium shows, Little started to work on methods and subjects that seem obvious to us now (the patient experience, the sociology and anthropology of health issues) but this was certainly not fashionable or widely accepted in the 1970s when he started these explorations, especially here in Australia.

One of the central concepts that his work badged and explored is that of liminality: a sort of unstable state between states of relatively greater certainly, being perhaps best seen as the interval (for non-sudden deaths) between “normal” life, due, for example, to a cancer diagnosis, and death. Normal in the sense of an “illusion” of settlement, where finitude is managed by aversion of the gaze as a result of good health, together with varying degrees of financial, social, and emotional security. Security but not necessarily safety, as we can never be completely safe, risks surround us every step of the way. But the relatively low risks throughout long western lives generate an emotional state of provisional reality that makes it very hard when there is a real threat of death.

The Side Effects of Vaccines
In this editorial I argue that the detection of extremely rare new side effects alone does not justify vaccine hesitancy among individuals or nations because any such stance must also consider the side effects of delaying vaccination. While there has been some limited discussion concerning the “risks” of not getting vaccinated, this language is insufficient; there are clear and identifiable effects of delaying vaccination on both the individual and the national level, many of them much more closely causatively linked to hesitancy than some of the supposed clotting “side effects” are to vaccines.

The Australian Royal Commission into Aged Care Quality and Safety acknowledged understaffing and substandard care in residential aged care and home care services, and recommendations were made that that the Australian Government should promote assistive technology within aged care. Robotic care assistants can provide care and companionship for the elderly—both in their own homes and within health and aged care institutions. Although more research is required into their use, studies indicate benefits, including enabling the elderly to live independently at home, assistance with medication and monitoring of safety. Nevertheless, there are inherent ethical challenges in the use of robots as carers, including loss of privacy, unwarranted restrictions on autonomy, lack of dignity, deception, and the exacerbation of loneliness. Ethics by design can counter these issues in development of robotics and clinical ethics committees have been put forward as a way of dealing with the ethical use of robotic care in healthcare institutions. In this paper I outline the ethical challenges of robotic care assistants and how these may be mediated in their design and use.

This critical essay evaluates the potential integration of distinct kinds of expertise in policymaking, especially during situations of critical emergencies, such as the COVID-19 pandemic. This article relies on two case studies: (i) herd immunity (UK) and (ii) restricted access to ventilators for disabled people (USA). These case studies are discussed as examples of experts’ recommendations that have not been widely accepted, though they were made within the boundaries of expert epistemic authority. While the fundamental contribution of biomedical experts in devising public health policies during the COVID-19 pandemic is fully recognized, this paper intends to discuss potential issues and limitations that may arise when adopting a strict expert-based approach. By drawing attention to the interests of minorities (disenfranchized and underrepresented groups), the paper also claims a broader notion of “relevant expertise.” This critical essay thus calls for the necessity of wider inclusiveness and representativeness in the process underlying public health policymaking.

It has been forty years since the first multi-channel cochlear implant was used in Australia. While heralded in the hearing world as one of the greatest inventions in modern medicine, not everyone reflects on this achievement with enthusiasm. For many people in the Deaf community, they see the cochlear implant as a tool that reinforces a social construct that pathologizes deafness and removes Deaf identity. In this paper, I set out the main arguments for and against cochlear implantation. While I conclude that, on balance, cochlear implants improve the well-being and broaden the open futures of deaf children, this does not justify mandating implants in circumstances where parents refuse them because this may compound unintended harms when society interferes in the parent-child relationship. For this reason, I argue that parental refusal of cochlear implantation falls within Gillam’s concept of the zone of parental discretion.

The development of the CRISPR gene editing technique has been hyped as a technique that could fundamentally change scientific research and its clinical application. Unrecognized is the fact that it joins other technologies that have tried and failed under the same discourse of scientific hype. These technologies, like gene therapy and stem cell research, have moved quickly passed basic research into clinical application with dire consequences. Before hastily moving to clinical applications, it is necessary to consider basic research and determine how CRISPR/Cas systems should be applied. In the case of single gene diseases, that application is expected to have positive impacts, but as we shift to more complex diseases, the impact could be unintentionally negative. In the context of common disabilities, the level of genetic complexity may render this technology useless but potentially toxic, aggravating a social discourse that devalues those with disabilities. This paper intends to define the issues related to disability that are associated with using the CRIPSR/Cas system in basic research. It also aims to provide a decision tree to help determine whether the technology should be utilized or if alternative approaches beyond scientific research could lead to a better use of limited funding resources.

As patient autonomy expands, a highly controversial issue has emerged. Should the advance directives (ADs) of refusing life-saving treatments or requesting euthanasia of persons with dementia (PWDs) who express changed minds or are often in a happy state be fulfilled? There are two autonomy-related positions. The mainstream position in philosophical discussions supports the priority of ADs based on precedent autonomy. Buchanan and Brock, and Dworkin represent this view. The other position supports the priority of PWDs’ current wishes based on minimal autonomy represented by Jaworska. By rethinking the theoretical and practical challenges of the two positions and their arguments respectively, the paper concludes that in such a scenario, the priority of ADs is morally indefensible, and it is also challenging to establish minimal autonomy defend the moral priority of PWDs’ current wishes. For PWDs whose past values, beliefs, and preferences fade away but who retain apparent intrinsic sentience of well-being, a modified defined quality-of-life (QoL) approach serves as another reasonable basis in their medical decision-making, and the ADs and the QoL should be further merged to reduce the uncertainty of the grey zone.

Death is both a private and public matter. In the euthanasia and assisted dying debates around the world, arguments in favour are based on the primacy of personal freedom and privacy. Compelling to many though these arguments are, states do have an interest in the lives of the citizens, especially to ensure that there has been no kind of foul play or criminal component in the chain of causation. In jurisdictions that follow the English common law tradition, there is a nearly one-thousand-year old coronial jurisdiction, and all countries have some form of legal oversight and recording of the manner of death (Freckleton and Ranson 2006). The state oversight also extends to investigation into the deaths of citizens who die in other countries, especially where an accident or criminal activity is suspected. The state also regulates the processes of death registration, disposal of remains, and of course, laws of succession, all of which play a part in the journey of a death. So it is undeniable that death is both a private and public matter, as, for all citizens, death is also a bureaucratic event: there is no escaping the paperwork. Unless one has the misfortune to be a “stateless” person, people usually have a nationality and/or maybe perhaps a permanent residency somewhere other than their native land and are therefore subject to a particular jurisdiction where they ordinarily reside, and these death-related legal and bureaucratic procedures are certainly more complicated across jurisdictional borders. This has not, however, dissuaded a number of highly motivated individuals from making, often much publicized, journeys to have assistance to die in other permissive jurisdictions because this is not lawful where they live.