This book examines the intersections of bioethics, human rights and health equity. It does so through the contextual lenses of nation states while presenting global themes on rights, colonialism and bioethics. The book is framed by the following propositions on indigenous health: it is a human rights issue; it is located within the politics of colonization; and subjugated indigenous knowledges require restoring.

Australia has one of the harshest regimes for the processing of asylum seekers, people who have applied for refugee status but are still awaiting an answer. It has received sharp rebuke for its policies from international human rights bodies but continues to exercise its resolve to protect its borders from those seeking protection. One means of doing so is the detention of asylum seekers who arrive in Australia by boat. Health care providers who care for asylum seekers in these conditions (...) experience a conflict of “dual loyalty,” whereby their role in preserving and maintaining the health of patients can run counter to their employment in detention facilities. Many psychiatrists who have worked in the detention setting engage in forms of political activism in order to change the process of seeking refuge. (shrink)

Australia's policy of mandatory indefinite detention of those seeking asylum and arriving without valid documents has led to terrible human rights abuses and cumulative deterioration in health for those incarcerated. We argue that there is an imperative to research and document the plight of those who have suffered at the hands of the Australian government and its agents. However, the normal tools available to those engaged in health research may further erode the rights and well being of this population, requiring (...) a rethink of existing research ethics paradigms to approaches that foster advocacy research and drawing on the voices of those directly affected, including those bestowed with duty of care for this population. (shrink)

Before sailing past the sirens' “flowery meadow,” Ulysses instructed his sailors to lash him to the mast so that he would not succumb to the siren's singing. His advance directive demonstrated that he valued his dispositional or long-term autonomy over his unquestioned right to make decisions. He also indicated to his oarsmen that he understood the nature of temptation and his inability to resist it. Ideas of autonomy and sexual choice are central to this discussion of new AIDS treatments, especially (...) the trials of preventative vaccines. Questions arise over the rights of individuals and the extent that these should be limited by concerns of the gay community. Should the gay community intervene in the risky decisions of individuals if no explicit advance directive exists? If so, how do they justify their paternalism? Could their aims not be better served through strengthening the individual dispositional autonomy of trial participants rather than making specific claims about the common good? (shrink)

This paper analyses the way in which being in possession of an adequate range of options is an essential component of autonomy. I discuss the way in which the conceptualisation of options in terms of basic rights might assist this argument, and apply these ideas to HIV/AIDS clinical research in the developing world. Finally, I suggest that mechanisms should be put in place through which vulnerable research participants can express their views about the relationship between the research in which they (...) are involved, and needs of a worthwhile life. (shrink)

Clinical trials in developing countries are often beset by ethical problems that would be considered unresolvable in countries like Australia and the U.S. Nevertheless, such trials continue to go ahead throughout Asia, Africa and South America, and are often conducted in ways that could be considered to be unethical. In this article I discuss two issues, focussing on an HIV preventative trial of a vaginal gel, the Nonoxynol 9 phase three trial being held in Kenya. The first of these is (...) what makes such a trial unethical given that it has approval from the WHO and seemingly conforms with acceptable standards of consent. The second issue involves using material from such trials, if we accept that they were conducted unethically. (shrink)

Research Ethics, Volume 18, Issue 1, Page 51-63, January 2022. Aboriginal and Torres Strait Islander peoples in Australia, have historically experienced research as another means of colonialization and oppression. Although there are existing frameworks, guidelines and policies in place that respond to this history, the risk of exploitation and oppression arising from research still raises challenging ethical questions. Since the 1990s the National Health and Medical Research Council in Australia has developed specific sets of guidelines that govern research with these (...) populations in an attempt to redress injustices of the past. The current guidelines: Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders, 2018, emphasis six core values which are bound together by “spirit and integrity.” The values are reflected through respect for cultural inheritance, and genuine negotiation of partnerships between researchers, other stakeholders, and communities. We examine whether these guidelines can lead to research and research practices that redress some of the ongoing traumas of colonialization and racism. We draw upon Margaret Urban Walker’s formulation of restorative justice, based upon her “pragmatics of repair” which relies upon “voice, validation and vindication” and at its core, the restoration of relationships. (shrink)

The advent of HIV focussed broad social attention on the group of people most affected by it in Australia, the so-called ‘gay community’. However, what a gay community actually was, and what kind of rights and duties were being attached to it remained unclear. However, it is obvious that such a community — or communities — did not fit the model proposed by communitarian writers like Michael Sandel and Charles Taylor, whereby subjects cannot stand outside their own constitutive attachments. I (...) also consider the common criticism of communitarianism, and see what kinds of collectives can in fact be considered ethical.The first part of this paper looks at the ethical issues surrounding community attachment of this kind in Australia in relation to the ethics of HIV/aids clinical research. In particular I examine the way in which certain forms of gay community attachment can be used to strengthen personal autonomy and check exploitation within the prevention and research process.The second part of this paper draws upon the issues just discussed. In particular I focus on the use of ‘community’ in the research process in developing countries, and suggest ways in which cultural considerations might strengthen autonomy. However, I go on to suggest that in many cases the idea of community has served the opposite purpose, and has in fact been used to oppress certain individuals and groups within the developing world, in the so-called interests of the greater good. In order to avoid this, I suggest a model of social and ethical research whereby all subjects and researchers in the clinical process might stand in greater relationships of equality with each other. (shrink)

In a recent edition of the Medical Journal of Australia, Greg Dore and David Cooper called on persons in developed nations like Australia to bridge the divide between resource-rich countries to nations in the developing world, where therapies to ease or halt the ravages of the virus are nonexistent or in short supply.

The situation around the seeking of refuge, both in Australia and abroad, has become a core human rights issue of our time, engendering protest and activism from the public, researchers, healthcare professionals and academics. The question remains: do bioethicists have duties to advocate on behalf of such populations, and if so, why? I argue that if our work is founded upon the principle of justice, then we do have such duties, and that our research, in itself, can become a form (...) of advocacy. (shrink)

Australia's policy of mandatory indefinite detention of those seeking asylum and arriving without valid documents has led to terrible human rights abuses and cumulative deterioration in health for those incarcerated. We argue that there is an imperative to research and document the plight of those who have suffered at the hands of the Australian government and its agents. However, the normal tools available to those engaged in health research may further erode the rights and well being of this population, requiring (...) a rethink of existing research ethics paradigms to approaches that foster advocacy research and drawing on the voices of those directly affected, including those bestowed with duty of care for this population. (shrink)

This article investigates whether or not theories of justice from political philosophy, first, support the position that health research should contribute to justice in global health, and second, provide guidance about what is owed by international clinical research (ICR) actors to parties in low- and middle-income countries. Four theories—John Rawls's theory of justice, the rights-based cosmopolitan theories of Thomas Pogge and Henry Shue, and Jennifer Ruger's health capability paradigm—are evaluated. The article shows that three of the four theories require the (...) conduct of health research for justice in global health. The theories help identify the ends of justice to which ICR is to contribute, but they cannot tell us how to organize ICR to promote these ends. Aside from Ruger's health capability paradigm, the theories also lack an allocative principle for assigning specific duties to specific actors. This creates difficulties for establishing obligations for certain types of ICR actors. (shrink)

Dual loyalty issues confront health and welfare professionals in immigration detention centres in Australia. There are four apparent ways they deal with the ethical tensions. One group provides services as required by their employing body with little questioning of moral dilemmas. A second group is more overtly aware of the conflicts and works in a mildly subversive manner to provide the best possible care available within a harsh environment. A third group retreats by relinquishing employment in the detention setting. A (...) fourth group is activist in intent and actions. Derived from research and ethnography conducted in Australia, the article explores the moral dilemmas confronting those who are duty-bound by professional codes of ethics while also bound by loyalty to their employers and silenced by confidentiality statements. It provides particular focus on psychiatry, nursing and social work. We conclude by speculating whether a politics of compassion and acts of solidarity can forge a pathway through the ethical terrain. In doing so we draw upon human rights considerations as well as on the works of Joan Tronto and Elisabeth Porter. (shrink)

Bioethicists have long debated the content of sponsors and researchers' obligations of justice in international clinical research. However, there has been little empirical investigation as to whether and how obligations of responsiveness, ancillary care, post-trial benefits and research capacity strengthening are upheld in low- and middle-income country settings. In this paper, the authors argue that research ethics guidelines need to be more informed by international research practice. Practical guidance on how to fulfil these obligations is needed if research groups and (...) other actors are to successfully translate them into practice because doing so is often a complicated, context-specific process. Case study research methods offer one avenue for collecting data to develop this guidance. The authors describe how such methods have been used in relation to the Shoklo Malaria Research Unit's vivax malaria treatment (VHX) trial (NCT01074905). Relying on the VHX trial example, the paper shows how information can be gathered from not only international clinical researchers but also trial participants, community advisory board members and research funder representatives in order to: (1) measure evidence of responsiveness, provision of ancillary care, access to post-trial benefits and research capacity strengthening in international clinical research; and (2) identify the contextual factors and roles and responsibilities that were instrumental in the fulfilment of these ethical obligations. Such empirical work is necessary to inform the articulation of obligations of justice in international research and to develop guidance on how to fulfil them in order to facilitate better adherence to guidelines' requirements. (shrink)

In response to calls to expand the scope of research ethics to address justice in global health, recent scholarship has sought to clarify how external research actors from high-income countries might discharge their obligation to reduce health disparities between and within countries. An ethical framework—‘research for health justice’—was derived from a theory of justice (the health capability paradigm) and specifies how international clinical research might contribute to improved health and research capacity in host communities. This paper examines whether and how (...) external funders, sponsors, and researchers can fulfill their obligations under the framework. (shrink)

This paper explores ethical questions arising from the work of health practitioners in immigration detention centres in Australia. It raises questions about the roles of professional disciplines and the ways in which they confront dual loyalty issues. The exploration is guided by interviews conducted with health professionals who have worked in asylum seeker detention and an examination of the outsider advocacy role undertaken by the social work profession. The paper discusses the stance taken by individuals and professional associations on participation (...) in controlled settings, including as participant, bystander and advocate, and asks when the provision of care becomes collusion with oppression. (shrink)

Many assumptions are made about public willingness to participate in epidemiological research, yet few empirical studies have been conducted to ascertain whether such assumptions are correct. Our qualitative study of the public and of expert stakeholders leads us to suggest that people are generally prepared to participate in epidemiological research, particularly if it is conducted by a trusted public institution such as a government health department, charity, or university. However, there is widespread community distrust of research conducted or sponsored by (...) pharmaceutical companies. Individuals are prompted to take part if the study concerns an illness they or a family member or friend have personally experienced or if they believe the research will confer a widespread public benefit. Preferences vary about the mode of contact for the research to be conducted. Willingness to participate in telephone surveys has decreased in recent years, and this may be a consequence of an increase in calls to homes by telemarketers and market researchers. Participants also stressed the importance of knowing where their names and contact details were sourced and suggested that this information be available to prospective study participants as a matter of course in the first approach or letter. We provide valuable information to epidemiologists in designing studies. (shrink)

The creation of pharmacotherapies, such as Selective Serotonin Reuptake Inhibitors (SSRIs), for the treatment of depression was hailed as a great breakthrough in mental health care. However, since that time, serious questions have arisen as to their safety and the way they are prescribed without full information being provided to patients about a range of important issues, including the possible aetiologies of depression, and the efficacy and potential side-effects of medication. These issues have been especially important in the care and (...) treatment of young people, as there is evidence that SSRIs may be implicated in increased suicidal behaviour. In this article, we examine the experiences of five individuals who were prescribed an SSRI in their late teens or early twenties, and discuss some of the ethical issues that arise from their accounts. (shrink)

We applaud and support the call by Mithani et al. for “a proactive form of bioethics that actively resists and denounces i...

It has been suggested that community advisory boards can play a role in minimising exploitation in international research. To get a better idea of what this requires and whether it might be achievable, the paper first describes core elements that we suggest must be in place for a CAB to reduce the potential for exploitation. The paper then examines a CAB established by the Shoklo Malaria Research Unit under conditions common in resource-poor settings – namely, where individuals join with a (...) very limited understanding of disease and medical research and where an existing organisational structure is not relied upon to serve as the CAB. Using the Tak Province Border Community Ethics Advisory Board as a case study, we assess the extent to which it might be able to take on a role minimising exploitation were it to decide to do so. We investigate whether, after two years in operation, T-CAB is capable of assessing clinical trials for exploitative features and addressing those found to have them. The findings show that, although T-CAB members have gained knowledge and developed capacities that are foundational for one-day taking on a role to reduce exploitation, their ability to critically evaluate studies for the presence of exploitative elements has not yet been strongly demonstrated. In light of this example, we argue that CABs may not be able to perform such a role for a number of years after initial formation, making it an unsuitable responsibility for many short-term CABs. (shrink)

BackgroundHealth research often uses health information, a subcategory of personal information, collected during clinical encounters. Conditions under which such health information can be used for the secondary purpose of research are set out in state, national and international law. In Australia, consent is required or the relevant conditions for a waiver of consent must be met and approved by a human research ethics committee (HREC). Consent for use of health information for research is rarely sought at an emergency department (ED) (...) presentation. Research often occurs after the index visit and gaining consent can be difficult. Waiver of consent provisions are frequently used, but acceptability of this approach to patients is unclear.ObjectiveTo identify ED patients’ knowledge and attitudes towards the use of health information for research, consent preferences and acceptability of waiver of consent.MethodsAn online, anonymous survey of adult patients attending two large EDs in Melbourne, Australia.Results103 patients completed the survey. We found that 52% were unaware that health information might be used for research. A majority (77%) felt that HREC approval for use of health information without consent was acceptable. However, 36% would prefer to be contacted regarding consent.ConclusionThese findings suggest a lack of awareness that health information can be used for research and that waiver of consent is acceptable, but not necessarily preferred, in most of the ED patient population. Efforts to increase awareness and provide opportunities to express preferences about health information use for research are needed. (shrink)

In the social sciences and in everyday speech we often talk about groups as if they behaved in the same way as individuals, thinking and acting as a singular being. We say for example that "Google intends to develop an automated car", "the U.S. Government believes that Syria has used chemical weapons on its people", or that "the NRA wants to protect the rights of gun owners". We also often ascribe legal and moral responsibility to groups. But could groups literally (...) intend things? Is there such a thing as a collective mind? If so, should groups be held morally responsible? Such questions are of vital importance to our understanding of the social world. In this lively, engaging introduction Deborah Tollefsen offers a careful survey of contemporary philosophers? answers to these questions, and argues for the unorthodox view that certain groups should, indeed, be treated as agents and deserve to be held morally accountable. Tollefsen explores the nature of belief, action and intention, and shows the reader how a belief in group agency can be reconciled with our understanding of individual agency and accountability. _Groups as Agents_ will be a vital resource for scholars as well as for students of philosophy and the social sciences encountering the topic for the first time. (shrink)

Responsible Robotics is about developing robots in ways that take their social implications into account, which includes conceptually framing robots and their role in the world accurately. We are now in the process of incorporating robots into our world and we are trying to figure out what to make of them and where to put them in our conceptual, physical, economic, legal, emotional and moral world. How humans think about robots, especially humanoid social robots, which elicit complex and sometimes disconcerting (...) reactions, is not predetermined. The animal–robot analogy is one of the most commonly used in attempting to frame interactions between humans and robots and it also tends to push in the direction of blurring the distinction between humans and machines. We argue that, despite some shared characteristics, when it comes to thinking about the moral status of humanoid robots, legal liability, and the impact of treatment of humanoid robots on how humans treat one another, analogies with animals are misleading. (shrink)

This paper analyses the hidden use of new axioms in set-theoretic practice with a focus on large cardinal axioms and presents a general overview of set-theoretic practices using large cardinal axioms. The hidden use of a new axiom provides extrinsic reasons in support of this axiom via the idea of verifiable consequences, which is especially relevant for set-theoretic practitioners with an absolutist view. Besides that, the hidden use has pragmatic significance for further important sub-groups of the set-theoretic community---set-theoretic practitioners with (...) a pluralist view and set-theoretic practitioners who aim for ZFC-proofs. By describing this, the paper gives a more complete picture of new axioms in set-theoretic practice. These observations, for instance, show that set-theoretic practitioners interested in ZFC-proofs use tools that go beyond ZFC. The analysis is based on empirical data that was collected in an extensive interview study with set-theoretic practitioners. (shrink)

This article argues that the fact that an action will compound a prior injustice counts as a reason against doing the action. I call this reason The Anti-Compounding Injustice principle or aci. Compounding injustice and the aci principle are likely to be relevant when analyzing the moral issues raised by “big data” and its combination with the computational power of machine learning and artificial intelligence. Past injustice can infect the data used in algorithmic decisions in two distinct ways. Sometimes prior (...) injustice undermines the accuracy of the data itself. In these contexts, improving accuracy will also help to avoid compounding injustice. Other times, past injustice produces real-world differences among people with regard to skills, health, wealth, and other traits that employers, lenders, and others seek to measure. When decisions are based on accurate data that itself results from prior injustice, these decisions can also compound injustice. This second dynamic has received less attention than the first but is especially important because improving the accuracy of data will not mitigate this unfairness. (shrink)

This guide leads readers systematically through the arguments of Mary Shepherd's two books. Chapters 1-4 cover the arguments in the Essay Upon the Relation of Cause and Effect (1824), where Shepherd argues that causal principles can be known by reason to be necessary truths and that causal inferences can be rationally justified. Shepherd's primary target in this work is Hume, but she also addresses the views of Thomas Brown and William Lawrence. Shepherd considered her second book, Essays on the Perception (...) of an External Universe, and Other Subjects Connected with the Doctrine of Causation (1827), to be an extension of the earlier project on causation; here she appeals to the causal principles established in the first book to argue that we can know through reason that an external world of continually-existing objects must exist independently of us, as the causes of our sensations. Chapter 5 of this Guide addresses Shepherd's accounts of sensation and reasoning; Chapters 6-9 lead the reader through the arguments of the Essays, as well laying out Shepherd's views on skepticism and Berkeleyan idealism, her accounts of mind and body, her philosophy of religion, and the solutions she offers to two puzzles about vision. (shrink)

In recent discussions on the meaning of derogatory terms, most theorists base their investigations on the assumption that slurring terms could in principle have some neutral, i.e. purely descriptive, counterpart. Lauren Ashwell has recently shown that this assumption does not generalize to gendered slurs. This paper aims to challenge the point and benefit of approaching the meaning of derogatory terms in contrast to their allegedly purely descriptive counterparts. I argue that different discursive practices among different communities of practice sometimes change (...) the semantics of a term. By the example of the term ‘black,’ I show in what ways these different practices may amount to semantic contestations which complicate the assessment of whether a specific politically significant term is purely descriptive. My discussion of politically significant terms provides insights into further phenomena such as the appropriation of derogatory terms by the target group or meaning change more generally. Moreover, it not only accounts for the political aspects of a linguistic phenomenon, but equally highlights and explains the oft-neglected but crucial role that language plays in social and political struggles. It thus contributes to ongoing discussions both in philosophy of language and in social and political philosophy. (shrink)

While many philosophers of science have accorded special evidential significance to tests whose results are "novel facts", there continues to be disagreement over both the definition of novelty and why it should matter. The view of novelty favored by Giere, Lakatos, Worrall and many others is that of use-novelty: An accordance between evidence e and hypothesis h provides a genuine test of h only if e is not used in h's construction. I argue that what lies behind the intuition that (...) novelty matters is the deeper intuition that severe tests matter. I set out a criterion of severity akin to the notion of a test's power in Neyman-Pearson statistics. I argue that tests which are use-novel may fail to be severe, and tests that are severe may fail to be use-novel. I discuss the 1919 eclipse data as a severe test of Einstein's law of gravity. (shrink)

In 1241/4 the theology masters at the university at Paris with their chancellor, Odo of Chateauroux, mandated by their bishop, William of Auvergne, met to condemn ten propositions against theological truth. This book represents the first comprehensive examination of what hitherto has been a largely ignored instrument in a crucial period of the university's early maturation. However, the book's ambition goes wider than this. The condemnation provides a window through which to view the wider doctrinal, intellectual, institutional and historical developments (...) within the emerging university. These include the advent of the Dominicans and Franciscans at the university; and the developing focus of Paris theologians on using their learning for preaching at a time of a rapid and sometimes divergent development of doctrine and concerns over the newly-translated Aristotelian and associated Arab and Jewish works, heresy, the Greek Church and the Jews. The book compares the condemnation's ten articles with the major statement of Catholic principles in the first canon of the Fourth Lateran Council, 1215, and assesses what conclusions can be drawn from their apparent correlation. (shrink)

In arguing against the likelihood of consciousness in non-human animals, Descartes advances a slippery slope argument that if thought were attributed to any one animal, it would have to be attributed to all, which is absurd. This paper examines the foundations of Thomas Willis’ comparative neuroanatomy against the background of Descartes’ slippery slope argument against animal consciousness. Inspired by Gassendi’s ideas about the corporeal soul, Thomas Willis distinguished between neural circuitry responsible for reflex behaviour and that responsible for cognitively or (...) consciously mediated behaviour. This afforded Willis a non-arbitrary basis for distinguishing between animals with thought and consciousness and those without, a methodology which retains currency for neuroscience today. (shrink)

Exploring the philosophical foundations of discrimination law as it exists in several jurisdictions, this collection of all new essays bridges the gap between abstract philosophical work on justice and fairness and legal work on specific types of discrimination.

Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial and difficult to regulate. In the future lies the promise of tailored medical treatments and pharmacogenomics but the borders between medical research and clinical practice are becoming blurred. We see sequencing platforms for research that can have diagnostic value for patients. Clinical applications and research have been kept separate, but the blurring lines challenges existing regulations and (...) ethical frameworks.Then how do we regulate it? This book contains an overview of the existing regulatory landscape for biobank research in the Western world and some critical chapters to show how regulations and ethical frameworks are developed and work. How should international sharing work? How design an ethical informed consent? An underlying critique: the regulatory systems are becoming increasingly complex and opaque. The international community is building systems that should respond to that. According to the authors in fact, it is time to turn the ship around. Biobank researchers have a moral responsibility to look at and assess their work in relation to the bigger picture: the shared norms and values of current society. Research ethics shouldn't only be a matter of bioethicists writing guidelines that professionals have to follow. Ethics should be practiced through discourse and regulatory frameworks need to be part of that public discourse. Ethics review should be then not merely application of bureaucracy and a burden for researchers but an arena where researchers discuss their projects, receive advice and practice their ethics skills. (shrink)

Cheating is deeply embedded in everyday life. The costs of the most common forms of cheating total close to a trillion dollars annually. Part of the problem is that many individuals fail to see such behavior as a serious problem. "Everyone does it" is a common rationalization, and one that comes uncomfortably close to the truth. That perception is also self-perpetuating. The more that individuals believe that cheating is widespread, the easier it becomes to justify. Yet what is most notable (...) about analysis of the problem is how little there is of it. Whether or not Americans are cheating more, they appear to be worrying about it less. In Cheating, eminent legal scholar Deborah L. Rhode offers the only recent comprehensive account of cheating in everyday life and the strategies necessary to address it. Because cheating is highly situational, Rhode drills down on its most common forms in sports, organizations, taxes, academia, copyright infringement, marriage, and insurance and mortgages. Cheating also reviews strategies necessary to address the pervasiveness and persistence of cheating in these contexts. We clearly need more cultural reinforcement of ethical conduct. Efforts need to begin early, with values education by parents, teachers, and other role models who can display and reinforce moral behaviors. Organizations need to create ethical cultures, in which informal norms, formal policies, and reward structures all promote integrity. People also need more moral triggers that remind them of their own values. Equally important are more effective enforcement structures, including additional resources and stiffer sanctions. Finally, all of us need to take more responsibility for combatting cheating. We need not only to subject our own conduct to more demanding standards, but also to assume a greater obligation to prevent and report misconduct. Sustaining a culture that actively discourages cheating is a collective responsibility, and one in which we all have a substantial stake. (shrink)