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.     

Patient and public involvement: Two sides of the same coin or different coins altogether?

Patient and public involvement (PPI) has gained widespread support in health research and health policy circles, but there is little consensus on the precise meaning or justifications of PPI. We argue that an important step towards clarifying the meaning and justification for PPI is to split apart the familiar acronym and draw a distinction between patient and public involvement. Specifically, we argue that patient involvement should refer to the practice of involving individuals in health research or policy on the basis of their experience with a particular condition, while public involvement should refer to the practice of involving individuals in health policy or research based on their status as members of a relevant population. Analyzing cases from the UK, Australia, and the USA, we show how our proposed distinction can deliver much needed clarity to conversations on PPI, while guiding the development and evaluation of future PPI‐based policies.     

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]     

Bioethicists to the Barricades!

In this article I begin with an anecdote as a way of exploring just exactly what activism entails. Are we talking about the kind of activism every citizen ought to engage in? Should we confine our topic to activism in health care settings? Just what is activism anyway, and how much and what kind ought bioethicists to engage in? Finally, I consider the possibility that it’s perfectly permissible for bioethicists not to be activists of any kind.     

On‐ground habitat restoration: Interview with Nancy Pallin

Nancy Pallin has been involved in bush regeneration practice for over 25 years as well as being involved in conservation advocacy. Her main work, helping to establish the Ku‐ring‐gai Flying‐Fox Reserve and coordinating its ecological restoration, draws on an ability to interpret nature to others and inspire collective action     

Theory and practice of clinical ethics support services: narrative and hermeneutical perspectives

In this paper we introduce narrative and hermeneutical perspectives to clinical ethics support services (CESS). We propose a threefold consideration of 'theory' and show how it is interwoven with 'practice' as we go along. First, we look at theory in its foundational role: in our case 'narrative ethics' and 'philosophical hermeneutics' provide a theoretical base for clinical ethics by focusing on human identities entangled in stories and on moral understanding as a dialogical process. Second, we consider the role of theoretical notions in helping practitioners to understand their situation in clinical ethics practice, by using notions like 'story', 'responsibility', or 'vulnerability' to make explicit and explain their practical experience. Such theoretical notions help us to interpret clinical situations from an ethical perspective and to foster moral awareness of practitioners. And, thirdly, we examine how new theoretical concepts are developed by interpreting practice, using practice to form and improve our ethical theory. In this paper, we discuss this threefold use of theory in clinical ethics support services by reflecting on our own theoretical assumptions, methodological steps and practical experiences as ethicists, and by providing examples from our daily work. In doing so, we illustrate that theory and practice are interwoven, as theoretical understanding is dependent upon practical experience, and vice-versa.     

“Whoever decides for you without you,s/he is against you!”: immigrant activism and the role of the Left in political racialization

Much of the migration literature neglects the questions of why and how “native” allies obstruct activism by immigrants and ethnic minorities. Left-wing organizations in particular are often assumed to be supportive of inclusion, and little research exists on the ways they have prevented the migrant population from having a voice in the political arena and from taking part in society as equals. Drawing on the critical theory literature, I introduce the concept of political racialization. This concept refers to mechanisms whereby political actors, in order to legitimize their work on immigration, have partially included immigrants in the political sphere, but in a relationship of “ethnic” or “racial” subordination. Through the analysis of 57 in-depth interviews with immigrant activists, I show how political racialization works within the Italian Left and how it contributes to marginalize the migrant population. I further explain how immigrant activists have challenged political racialization through their 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.     

Unsettling Power: Domestic Violence,Gender Politics,and Struggles over Sovereignty in Ghana

This article provides a new lens for analyzing power formations in human rights practices by examining Ghanaian struggles over a Domestic Violence Bill. While the hegemonic character of human rights advocacy is well-established, we know less about exercises of power in discourses and practices that oppose rights. I analyze how the Ghanaian government constructed the discourse of cultural sovereignty and deployed it against women's rights. The government legitimated this discourse by appropriating the voice of ‘the people’ and superimposing notions of ‘foreignness’ onto both the Bill and Ghanaian women's rights activists. Drawing on the historiography of colonialism and ethnography of political performance, I argue that this case illustrates how the discourse of cultural sovereignty is mobilized in a struggle over shifting configurations of gender, political activism, and state sovereignty.     

Genetic variation in male attractiveness: It is time to see the forest for the trees

Female choice based on multiple male traits, rather than on any single one, has been reported in many species and may well be a rule rather than an exception. However, the implications this has for selection acting on choosiness itself remain underappreciated. We argue that this constitutes one of the important impediments to our understanding of the evolution of mate choice. We discuss this issue primarily in the context of the Fisherian model of sexual selection. We review theory and empirical data, showing how the crucial parameter of the model—genetic variation in male attractiveness—can be estimated when attractiveness is a function of multiple traits. Based on the reviewed theory, we show how relying on individual male traits, instead of overall attractiveness, can produce biased estimates of Fisherian benefits of female choice. This bias can be substantial, especially when many traits contribute to male attractiveness. We discuss a number of methodological issues that, we hope, will stimulate future studies and help resolving the long‐standing mystery of mate choice.     

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.     

The Evolution of Facilitated Industrial Symbiosis

While much work has been done on the conditions surrounding the emergence and establishment of industrial symbiosis (IS), new attention is being paid to understanding the evolution of IS over time. We demonstrate empirically how a new, facilitated IS initiative developed and evolved over an 8‐year period. We explore its network evolution by considering how the facilitator's actions enabled and precluded two fundamental network processes—serendipitous and goal‐directed processes. We discuss implications for a more generalized theory of IS development by exploring why and how different evolutionary trajectories may unfold.     

Antagonistic pleiotropy in species with separate sexes,and the maintenance of genetic variation in life‐history traits and fitness

Antagonistic pleiotropy (AP)—where alleles of a gene increase some components of fitness at a cost to others—can generate balancing selection, and contribute to the maintenance of genetic variation in fitness traits, such as survival, fecundity, fertility, and mate competition. Previous theory suggests that AP is unlikely to maintain variation unless antagonistic selection is strong, or AP alleles exhibit pronounced differences in genetic dominance between the affected traits. We show that conditions for balancing selection under AP expand under the likely scenario that the strength of selection on each fitness component differs between the sexes. Our model also predicts that the vast majority of balanced polymorphisms have sexually antagonistic effects on total fitness, despite the absence of sexual antagonism for individual fitness components. We conclude that AP polymorphisms are less difficult to maintain than predicted by prior theory, even under our conservative assumption that selection on components of fitness is universally sexually concordant. We discuss implications for the maintenance of genetic variation, and for inferences of sexual antagonism that are based on sex‐specific phenotypic selection estimates—many of which are based on single fitness components.     

Politicizing place perception: a phenomenology of urban activism in Istanbul

Phenomenology intuits that people's perception of the environment is related to their lived activities, emotions, and perspectives, and is in this process also temporally experienced. This article applies these insights to political activism, exploring its conditioning of militants’ sensory experience of the city and showing how militants’ urban knowledge is intimately connected to political practices of organizing, mobilizing, and agitating, each orientated in turn by the pursuit of revolution. Based on fieldwork in Istanbul with ex‐militants and their memories of political action from the years immediately before and after the 1980 military coup, the article applies and extends phenomenological understandings of place perception to explore their changing experiences of the city. This quality of perception as a temporal process is vital for understanding both historical and contemporary features of ex‐militants’ remembering of Istanbul, related as they are to a state project to shape and simplify public knowledge of their activities, and to certain political developments posited by activists themselves as efficacious in transforming the meaning of their past acts. It concludes by illustrating how these two processes come together in the recent institution by ex‐militants of a new museum (12 September Museum of Shame), opened some thirty years after the events it objectivizes.     

Plasticity‐led evolution: A survey of developmental mechanisms and empirical tests

Recent years have witnessed increased interest in evaluating whether phenotypic plasticity can precede, facilitate, and possibly even bias adaptive evolution. Despite accumulating evidence for “plasticity‐led evolution” (i.e., “PLE”), critical gaps remain, such as: how different developmental mechanisms influence PLE; whether some types of traits and taxa are especially prone to experience PLE; and what studies are needed to drive the field forward. Here, we begin to address these shortcomings by first speculating about how various features of development—modularity, flexible regulation, and exploratory mechanisms—might impact and/or bias whether and how PLE unfolds. We then review and categorize the traits and taxa used to investigate PLE. We do so both to identify systems that may be well‐suited for studying developmental mechanisms in a PLE context and to highlight any mismatches between PLE theory and existing empirical tests of this theory. We conclude by providing additional suggestions for future research. Our overarching goal is to stimulate additional work on PLE and thereby evaluate plasticity's role in evolution.     

<Emphasis Type="Bold">Intersex Activists in Israel: Their Achievements and the Obstacles They Face</Emphasis>

This article focuses on the dynamic between the medical policy on intersex bodies and intersex activists in Israel. Recently, in many countries changes have taken place in medical guidelines regarding intersex patients and laws that regulate medical practices and prohibit irreversible surgeries for intersex babies for cosmetic reasons and without the patient’s consent. In Israel, intersex activists are limited by several factors. On the one hand, they are influenced by the achievements of intersex activism around the world but on the other, the pathologizing medical discourse and socio-medical practices, which include early diagnosis, early irreversible surgeries, and secrecy surrounding intersexed bodies, present obstacles to achieving bodily autonomy for intersex individuals and social recognition of different sex development. Nevertheless, intersex activists are attempting to find different social and media spaces in which to achieve public acknowledgement and future bodily autonomy for intersexed people and seeking medical professionals’ cooperation. Recently, the Israeli Ministry of Health published a new circular for intersex/DSD patients, and while it does not clearly forbid irreversible surgeries, it provides information about the complexities of intersex people and their experience.     

Radical masculinity: morality, sociality and relationships through recollections of Naxalite activists

In this article I argue that the concern with gender relations and the challenges female activists were facing foreclosed any discussion of the transformation activism signalled for male comrades, and thus for wider society. I am particularly interested in men’s own views of their social roles and personal predicaments as the more subtle processes of transformation in the lives of male activists are often overlooked. The article takes a closer look at relationships between men, whether friendships or kin relations, as important roles and everyday practices former activists were/are involved in—during their phase of active participation, but crucially also before they become militants and in the aftermath of their involvement in the movement.     

SPITE VERSUS CHEATS: COMPETITION AMONG SOCIAL STRATEGIES SHAPES VIRULENCE IN PSEUDOMONAS AERUGINOSA

Social interactions have been shown to play an important role in bacterial evolution and virulence. The majority of empirical studies conducted have only considered social traits in isolation, yet numerous social traits, such as the production of spiteful bacteriocins (anticompetitor toxins) and iron‐scavenging siderophores (a public good) by the opportunistic pathogen Pseudomonas aeruginosa, are frequently expressed simultaneously. Crucially, both bacteriocin production and siderophore cheating can be favored under the same competitive conditions, and we develop theory and carry out experiments to determine how the success of a bacteriocin‐producing genotype is influenced by social cheating of susceptible competitors and the resultant impact on disease severity (virulence). Consistent with our theoretical predictions, we find that the spiteful genotype is favored at higher local frequencies when competing against public good cheats. Furthermore, the relationship between spite frequency and virulence is significantly altered when the spiteful genotype is competed against cheats compared with cooperators. These results confirm the ecological and evolutionary importance of considering multiple social traits simultaneously. Moreover, our results are consistent with recent theory regarding the invasion conditions for strong reciprocity (helping cooperators and harming noncooperators).     

Are ME/CFS Patient Organizations “Militant”?

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and by extension, ME/CFS patient organizations (POs)—exhibit “militant” social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness. However, we identify a common trope in the discourse over ME/CFS: the claim of “militant” patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications. Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.