Activism,Bioethics and Academic Research

This article sketches a taxonomy of the activities in which bioethics academics engage, including activities that may make their own research more impactful, from little or no engagement outside academia to activism or extreme activism. This taxonomy, the first of its kind, may be useful in determining what obligations bioethics academics have in relation to activism and activities that fall short of activism.     

On beginning with justice: Bioethics,advocacy and the rights of asylum seekers

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.     

Do junior academic bioethicists have an obligation to be activists?

Activism and bioethics have enjoyed a somewhat strained relationship. In this paper, I consider activism specifically from the perspective of junior academics. I will argue that although there may be a prima facie duty for bioethicists to be activists, countervailing considerations for junior academics may mean that they, in particular, should refrain from undertaking activist activities. I will argue this on the basis of two key claims. First, I argue that activism may come at a potential cost to the academics who undertake it, and that these costs are potentially of greatest detriment to junior academics undertaking activism. Second, I argue that junior academics are likely to be less effective activists than established academics. Moreover, undertaking activism as a junior academic may prevent one from becoming an effective activist later. Finally, I will discuss the implications of this argument for activist commitments later in one’s career.     

Conscience claims,metaphysics, and avoiding an LGBT eugenic

Novel assisted reproductive technologies (ART) are poised to present our society with strange new ethical questions, such as whether lesbian, gay, bisexual, and transgender (LGBT) couples should be allowed to produce children biologically related to both parents, or whether trans‐women who want to experience childbirth should be allowed to receive uterine transplants. Clinicians opposed to offering such technologies to LGBT couples on moral grounds are likely to seek legal shelter through the conscience clauses enshrined in U.S. law. This paper begins by briefly discussing some novel ART on the horizon and noting that it is unclear whether current conscience clauses will permit fertility clinics to deny such services to LGBT individuals. A compromise approach to conscience is any view that sees the value of respecting conscience claims within limits. I describe and critique the constraints proposed in the recent work of Wicclair, NeJaime and Siegel as ultimately begging the question. My purpose is to strengthen their arguments by suggesting that in the controversial situations that elicit claims of conscience, bioethicists should engage with the metaphysical claims in play. I argue that conscience claims against LGBT individuals ought to be constrained because the underlying metaphysic—that God has decreed the LGBT lifestyle to be sinful—is highly implausible from the perspective of a naturalized metaphysic, which ought to be the lens through which we evaluate conscience claims.     

Autism beyond pediatrics: why bioethicists ought to rethink consent in light of chronicity and genetic identity

Autism is a chronic neurodevelopmental disorder that presents unique challenges to bioethicists. In particular, bioethicists ought to reconsider pediatric consent in light of disparity between beliefs that are held about the disorder by parents and adults with autism. The neurodiverse community ought to be given some consideration in this debate, and, as such, there may be a role for autistic narratives in clarifying this problem.     

Value theory and the best interests standard

The idea of a patient's best interests raises issues in prudential value theory–the study of what makes up an individual's ultimate (nonmoral) good or well-being. While this connection may strike a philosopher as obvious, the literature on the best interests standard reveals almost no engagement of recent work in value theory. There seems to be a growing sentiment among bioethicists that their work is independent of philosophical theorizing. Is this sentiment wrong in the present case? Does value theory make a significant difference in interpreting best interests? In pursuing this question, I begin with a quick sketch of broad kinds of value theories, identifying representatives that are plausible enough to count as contenders. I then explore what each account suggests in (1) neonatal treatment decisions, and (2) decisions for patients in persistent vegetative states. I conclude that while these accounts converge somewhat in their interpretations of best interests, they also have importantly different implications.     

‘You Say You’re Happy, but…’: Contested Quality of Life Judgments in Bioethics and Disability Studies

In this paper, I look at several examples that demonstrate what I see as a troubling tendency in much of mainstream bioethics to discount the views of disabled people. Following feminist political theorists who argue in favour of a stance of humility and sensitive inclusion for people who have been marginalized, I recommend that bioethicists adopt a presumption in favour of believing rather than discounting the claims of disabled people. By taking their claims at face value and engaging with disabled people in open dialogue over impairment and disadvantage, bioethicists may take to heart an important lesson about human fragility and resilience.     

Assisted Reproduction and Distributive Justice

The Canadian province of Quebec recently amended its Health Insurance Act to cover the costs of In Vitro Fertilization (IVF). The province of Ontario recently de‐insured IVF. Both provinces cited cost‐effectiveness as their grounds, but the question as to whether a public health insurance system ought to cover IVF raises the deeper question of how we should understand reproduction at the social level, and whether its costs should be a matter of individual or collective responsibility. In this article I examine three strategies for justifying collective provisions in a liberal society and assess whether public reproductive assistance can be defended on any of these accounts. I begin by considering, and rejecting, rights‐based and needs‐based approaches. I go on to argue that instead we ought to address assisted reproduction from the perspective of the contractarian insurance‐based model for public health coverage, according to which we select items for inclusion based on their unpredictability in nature and cost. I argue that infertility qualifies as an unpredictable incident against which rational agents would choose to insure under ideal conditions and that assisted reproduction is thereby a matter of collective responsibility, but only in cases of medical necessity or inability to pay. The policy I endorse by appeal to this approach is a means‐tested system of coverage resembling neither Ontario nor Quebec's, and I conclude that it constitutes a promising alternative worthy of serious consideration by bioethicists, political philosophers, and policy‐makers alike.     

Beyond the Sterility of a Distinct African Bioethics: Addressing the Conceptual Bioethics Lag in Africa

In the current debate on the future of bioethics in Africa, several authors have argued for a distinct communitarian African bioethics that can counter the dominancy of Western atomistic principlism in contemporary bioethics. In this article I examine this rather contentious argument and evaluate its validity and viability. Firstly, I trace the contextual origins of contemporary bioethics and highlight the rise and dominance of principlism. I particularly note that principlism was premised on a content‐thin notion of the common morality that is in need of enrichment. I also contend that bioethics is essentially two‐dimensional, being both conceptual and empirical, and indicate the lag in Africa with regard to conceptual bioethics. I then appeal for authentic engagement by 1) African health care professionals, 2) African health care training institutions, 3) Africa's bioethics development partners, and 4) African bioethicists and philosophers, towards addressing this critical lag. I underline the need to maintain the essential universality of bioethics as a discipline. I particularly argue against the pursuit of a distinct African bioethics, as it appears to be rooted in sterile African ethno‐philosophy. Rather, African bioethicists and philosophers would do well to elucidate the universalisability of insights from traditional African thought, for the benefit of bioethics as a whole. Thus we must engage beyond the sterility of a distinct African bioethics ‐ authentically reflecting on the essentially universal contemporary bioethical concerns ‐ to effectively articulate a viable trajectory for bioethics in Africa.     

Whose crisis counts? Intersectionality,austerity and the politics of survival

Foregrounding the voices of minority women in England, Scotland and France, Minority Women and Austerity provides a rich and compelling account of austerity’s lived effects. Through its intersectional analyses and historically attendant frame, the book locates minority women’s experiences of austerity not as fundamentally “new” but rather as an extension and sharpening of conditions of “routinized crisis” and inequality. In doing so it compels its readers to ask: whose crisis counts? In this review paper, I summarize the book’s key contributions. In particular, I discuss the book’s theorizations of “political racelessness” to critique the erasure of minority women’s experiences and activism. I reflect on what this means for those researching austerity and its deleterious effects, and for those participating in anti-austerity activism. I end by discussing the analytical tools that the book offers for interrogating the Left’s response to on-going austerity within a post-Brexit Britain.     

The responsibilities of the engaged bioethicist: Scholar,advocate, activist

The work of a bioethicist carries distinctive responsibilities. Alongside those of any worker, there are responsibilities associated with giving guidance to practitioners, policy makers and the public. In addition, bioethicists are professionally exposed to and required to identify situations of moral trouble, and as a result may find themselves choosing to work as advocates or activists, with responsibilities that are distinct from those generally acknowledged within academia. The requirement for bioethics to make normative judgements entails taking a stance, which means there cannot be a sharp line between ‘academic’ or ‘objective’ bioethics, and advocacy/activism, but a continuum of bioethicists’ engagement and an associated continuum of responsibilities.     

DISPUTING THE ETHICS OF RESEARCH: THE CHALLENGE FROM BIOETHICS AND PATIENT ACTIVISM TO THE INTERPRETATION OF THE DECLARATION OF HELSINKI IN CLINICAL TRIALS

In this paper we argue that the consensus around normative standards for the ethics of research in clinical trials, strongly influenced by the Declaration of Helsinki, is perceived from various quarters as too conservative and potentially restrictive of research that is seen as urgent and necessary. We examine this problem from the perspective of various challengers who argue for alternative approaches to what ought or ought not to be permitted. Key themes within this analysis will examine these claims and argue they have implications for the interests of the research subject, research governance and regulation. Using our work with TREAT‐NMD, the neuromuscular clinical trials network, we posit that there is a place for advancing the discourse of moral rights and moral duties in the context of research, especially from the perspective of patients and their families, and for including the politics of patient activism and empowerment. At the same time we remain vigilant to the danger that the therapeutic misconception and other serious vulnerabilities for the patient population in clinical trials, are at risk of being overlooked.     

‘There are no chickens in suicide vests’: the decoupling of human rights and animal rights in Israel

In this article, I consider the shifting politics of animal rights activism in Israel in relation to human rights activism. I find that whereas in the past, human and animal rights activism were tightly linked, today they have become decoupled, for reasons I explore in this article. Although human and animal rights activism once shared social and ideological foundations in Israeli society, today much of the current animal rights activism is assertive and explicit in its disregard for human rights issues, such as the ongoing occupation of Palestine and the treatment of Palestinians. This decoupling has been heightened by the appropriation of animal rights politics by a right‐wing state for the purposes of ethical legitimation. This article considers the dilemmas of ethical responsibilities towards humans and animals as it plays out in one of the most vexed political environments in the world. I consider the shifting politics of human and animal rights activism, and demonstrate how they implicate and entangle each other in the context of the ongoing Israeli‐Palestinian conflict. I further consider what the decoupling of the human and animal rights movements might suggest regarding the ongoing academic critique of human rights and humanism.     

EXISTENCE: WHO NEEDS IT? THE NON‐IDENTITY PROBLEM AND MERELY POSSIBLE PEOPLE

In formulating procreative principles, it makes sense to begin by thinking about whose interests ought to matter to us. Obviously, we care about those who exist. Less obviously, but still uncontroversially, we care about those who will exist. Ought we to care about those who might possibly, but will not actually, exist? Recently, unusual positions have been taken regarding merely possible people and the non‐identity problem. David Velleman argues that what might have happened to you – an existent person – often doesn't merit moral consideration since the alternative person one would have been had what might have happened actually happened is a merely possible person about whom one has no reason to care. He argues that his way of thinking can eliminate the non‐identity problem. Caspar Hare argues that merely possible people have interests and are morally relevant. He argues that we can solve the non‐identity problem by rejecting the view that merely possible people are morally irrelevant. Both Hare and Velleman argue that focusing on one's de dicto rather than on one's de re children can help us avoid the non‐identity problem. I analyze the role that merely possible, nonexistent hypothetical entities ought to play in our moral reasoning, especially with regard to procreation. I refute both Velleman's and Hare's views and demonstrate the difficulties we encounter when we try to apply their views to common non‐identity cases. I conclude with the common‐sense view regarding who matters, morally: only those who do, did, or will exist.     

Justifying the risks of COVID-19 challenge trials: The analogy with organ donation

In the beginning of the COVID pandemic, researchers and bioethicists called for human challenge trials to hasten the development of a vaccine for COVID. However, the fact that we lacked a specific, highly effective treatment for COVID led many to argue that a COVID challenge trial would be unethical and we ought to pursue traditional phase III testing instead. These ethical objections to challenge trials may have slowed the progress of a COVID vaccine, so it is important to evaluate their merit. One common way of doing so is to make an analogy to other social practices that are relevantly similar and which we currently sanction. We submit that non-directed live organ donation (NDLOD) is a promising analogy. After arguing that the risks to volunteers for each activity appear similar, we explore potential disanalogies that would undermine the comparison. We note that there are differences in both the kind and certainty of benefit secured by NDLOD compared to challenge trials. We conclude these differences are insufficient to make NDLOD permissible and challenge trials impermissible. Ultimately, if we think the risks associated with NDLOD are ethically permissible, then we should think the same of the risks associated with COVID challenge trials.     

Human cloning: category, dignity, and the role of bioethics

Human cloning has been simultaneously a running joke for massive worldwide publicity of fringe groups like the Raelians, and the core issue of an international movement at the United Nations in support of a treaty to ban the use of cloning techniques to produce a child (so called reproductive cloning). Yet, even though debates on human cloning have greatly increased since the birth of Dolly, the clone sheep, in 1997, we continue to wonder whether cloning is after all any different from other methods of medically assisted reproduction, and what exactly makes cloning an 'affront to the dignity of humans.' Categories we adopt matter mightily as they inform but can also misinform and lead to mistaken and unproductive decisions. And thus bioethicists have a responsibility to ensure that the proper categories are used in the cloning debates and denounce those who try to win the ethical debate through well-crafted labels rather than well-reasoned argumentations. But it is as important for bioethicists to take a position on broad issues such as human cloning and species altering interventions. One 'natural question' would be, for example, should there be an international treaty to ban human reproductive cloning?     

Still Quiet After All These Years

Some 14?years ago, I published an article in which I identified a prime site for bioethicists to ply their trade: medical responses to requests for hormonal and surgical interventions aimed at facilitating transgendered people??s transition to their desired genders. Deep issues about the impact of biotechnologies and health care practices on central aspects of our conceptual system, I argued, were raised by how doctors understood and responded to people seeking medical assistance in changing their gender, and there were obviously significant issues of regulation involved as well. Yet mainstream bioethics was conspicuous by its relative absence from the discussion. Here, I return to the matter and find that, while the conceptual issues are just as profound and their connection to health care practice and policy just as intimate, even as transgender issues have become much more socially visible, bioethical engagement with gender reassignment has increased only slightly. I set the little movement that has occurred against the backdrop of the situation as I saw it in 1998 and conclude, once again, by trying to make the bait for bioethicists inviting.     

Moving from Complaints to Action: Oppositional Consciousness and Collective Action in a Political Community

This article analyzes the process of youth political activism and development by drawing on ethnographic research on Asian and Pacific Islander youth activists. Young people revealed that collective action begins with a critical analysis of their lived experiences with inequalities. Their actions also involved oppositional consciousness that was nurtured in social justice-oriented community organizations. Tracking youth's successful efforts for school reform, I show how oppositional consciousness is realized and what activism looks like in practice.  [youth activism, oppositional consciousness, social–educational change, Asian and Pacific Islanders]     

WHO'S ARGUING? A CALL FOR REFLEXIVITY IN BIOETHICS

In this paper we set forth what we believe to be a relatively controversial argument, claiming that ‘bioethics’ needs to undergo a fundamental change in the way it is practised. This change, we argue, requires philosophical bioethicists to adopt reflexive practices when applying their analyses in public forums, acknowledging openly that bioethics is an embedded socio‐cultural practice, shaped by the ever‐changing intuitions of individual philosophers, which cannot be viewed as a detached intellectual endeavour. This said, we argue that in order to manage the personal, social and cultural embeddedness of bioethics, philosophical bioethicists should openly acknowledge how their practices are constructed and should, in their writing, explicitly deal with issues of bias and conflict of interest, just as empirical scientists are required to do.     

An African theory of bioethics: reply to MacPherson and Macklin

In a prior issue of Developing World Bioethics, Cheryl Macpherson and Ruth Macklin critically engaged with an article of mine, where I articulated a moral theory grounded on indigenous values salient in the sub-Saharan region, and then applied it to four major issues in bioethics, comparing and contrasting its implications with those of the dominant Western moral theories, utilitarianism and Kantianism. In response to my essay, Macpherson and Macklin have posed questions about: whether philosophical justifications are something with which bioethicists ought to be concerned; why something counts as 'African'; how medicine is a moral enterprise; whether an individual right to informed consent is consistent with sub-Saharan values; and when thought experiments help to establish firm conclusions about moral status. These are important issues for the field, and I use this reply to take discussion of them a step or two farther, defending my initial article from Macpherson's and Macklin's critical questions and objections.