Our flawed approach to undue inducement in medical research

Some worry that offering too much money to participate in medical research can seduce people into participating against their better judgment. These overly attractive offers that impair judgment are often referred to as ‘undue inducements’. The current approach to prevent undue inducement is to limit the size of such offers. The hope is that smaller offers will not be attractive enough to impair judgment. Even if this is true, I argue that we should reject this solution. In Section 1, I go over the problem of undue inducement, and our current approach to preventing it, in more detail. In Section 2, I argue that, like money, therapeutic benefits of medical research may also unduly induce. In Section 3, I argue that the current approach to preventing undue inducement is absurd in the case of therapeutic inducements. In Section 4, I argue that our current approach is analogously problematic in the case of monetary inducements.     

Amnesia,Anesthesia, and Warranted Fear

Is a painful experience less bad for you if you will not remember it? Do you have less reason to fear it? These questions bear on how we think about medical procedures and surgeries that use an anesthesia regimen that leaves patients conscious – and potentially in pain – but results in complete ‘drug‐induced amnesia’ after the fact. I argue that drug‐induced amnesia does not render a painful medical procedure a less fitting object of fear, and thus the prospect of amnesia does not give patients a reason not to fear it. I expose three mistakes in reasoning that might explain our tendency to view pain or discomfort as less fearful in virtue of expected amnesia: a mistaken view of personal identity; a mistaken view of the target of anticipation; and a mistaken method of incorporating past evidence into calculations about future experiences. Ultimately my argument has implications for whether particular procedures are justified and how medical professionals should speak with anxious patients about the prospect of drug‐induced amnesia.     

Human Rights and Broken Cisterns: Counterpublic Christianity and Rights-based Discourse in Contemporary England

Although human rights are often framed as the result of centuries of Western Christian thought, many English evangelicals are wary of the U.K.’s recent embrace of rights-based law. Yet this wariness does not preclude their use of human rights instruments in the courts. Drawing upon fieldwork with Christian lobbyists and lawyers in London, I argue that evangelical activists instrumentalise rights-based law so as to undermine the universalist claims on which they rest. By constructing themselves as a marginalised counterpublic whose rights are frequently ‘trumped’ by the competing claims of others, they hope to convince their fellow Britons that a society built upon the logic of equal rights cannot hope to deliver the human flourishing it promises. Given the salience of contemporary political conservatism, I call for further ethnographic research into counterpublic movements, and offer my interlocutors’ instrumentalisation of human rights as a critique of the inconsistencies of secular law.     

Valuing Lives and Allocating Resources: A Defense of the Modified Youngest First Principle of Scarce Resource Distribution

In this paper, I argue that the ‘modified youngest first’ principle provides a morally appropriate criterion for making decisions regarding the distribution of scarce medical resources, and that it is morally preferable to the simple ‘youngest first’ principle. Based on the complete lives system's goal of maximizing complete lives rather than individual life episodes, I argue that essential to the value we see in complete lives is the first person value attributed by the experiencer of that life. For a life to be ‘complete’ or ‘incomplete,’ the subject of that life must be able to understand the concept of a complete life, to have started goals and projects, and to know what it would be for that life to be complete. As the very young are not able to do this, it can reasonably be said that their characteristically human lives have not yet begun, giving those accepting a complete lives approach good reason to accept the modified youngest first principle over a simple ‘youngest first’ approach.     

Do we have a right to an unmanipulated genome? The human genome as the common heritage of mankind

The human genome is commonly regarded as a ‘natural’ connection between all human beings, as it has been handed down to us by our predecessors. As such, it is believed to represent common heritage of humanity, e.g. a resource of outstanding value that should be the object of special protection and international concern. Some critics argue that germline manipulation would disrupt this natural heritage and that we have a duty to preserve the integrity of the human germline. However, a closer look reveals that the concept of common heritage of humanity does not necessarily imply the impermissibility of germline manipulation. If it is restricted to the prevention of severe diseases, germline manipulation does not represent a threat to the unity and identity of the human species, even though this would create a new form of relationship between human beings, namely that between a designer and a genetically designed person.     

The Beginning of Personhood: A Thomistic Biological Analysis

‘When did I, a human person, begin to exist?’ In developing an answer to this question, I utilize a Thomistic framework, which holds that the human person is a composite of a biological organism and an intellective soul. Eric Olson and Norman Ford both argue that the beginning of an individual human biological organism occurs at the moment when implantation of the zygote in the uterus occurs and the ‘primitive streak’ begins to form. Prior to this point, there does not exist an individual human organism, but a cluster of biological cells which has the potential to split and develop as one or more separate human organisms (identical twinning). Ensoulment (the instantiation of a human intellective soul in biological matter) does not occur until the point of implantation. This conception of the beginning of human personhood has moral implications concerning the status of pre‐implantation biological cell clusters. A new understanding of the beginning of human personhood entails a new understanding of the morality of certain medical procedures which have a direct affect on these cell clusters which contain human DNA. Such procedures discussed in this article are embryonic stem cell research, in vitro fertilization, procured abortion, and the use of abortifacient contraceptives.     

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.     

Parental virtue: a new way of thinking about the morality of reproductive actions

In this paper I explore the potential of virtue ethical ideas to generate a new way of thinking about the ethical questions surrounding the creation of children. Applying ideas from neo‐Aristotelian virtue ethics to the parental sphere specifically, I develop a framework for the moral assessment of reproductive actions that centres on the concept of parental virtue. I suggest that the character traits of the good parent can be used as a basis for determining the moral permissibility of a particular reproductive action. I posit three parental virtues and argue that we can see the moral status of a reproductive action as determined by the relationship between such an action and (at least) these virtues. Using a case involving selection for deafness, I argue that thinking in terms of the question ‘would a virtuous parent do this?’ when morally assessing reproductive action is a viable and useful way of thinking about issues in reproductive ethics.     

Mind the Gaps: Intersex and (Re-productive) Spaces in Disability Studies and Bioethics

With a few notable exceptions disability studies has not taken account of intersexuality, and it is principally through the lenses of feminist and queer-theory oriented ethical discussions but not through ‘straight’ bioethics that modes valuing intersex difference have been proposed. Meanwhile, the medical presupposition that intersex characteristics are inherently disabling to social viability remains the taken-for-granted truth from which clinical practice proceeds. In this paper I argue against bioethical perspectives that justify extensive and invasive pre- and post-natal medical interference to eradicate intersex. I argue instead that to constitute the necessary conditions for the recognition of the intersexed child as a person, a life valid in its own right, clinicians must refrain from aggressive interference. Clinical specialists presuppose that intersexed children will be socially disabled and unrecognizable as persons; frustrated by the general failure of traditional interventions to assign a sex, clinicians are now pursuing prenatal technologies, including selective termination, to erase intersex.     

The European Refugee Crisis and Humanitarian Citizenship in Greece

Greece has been at the epicentre of two overlapping ‘humanitarian crises:’ the economic crisis and the crisis of refugees. Since 2011, as austerity policies have hamstrung the Greek state’s capacity to meet the basic needs of citizens, long-term residents, and new arrivals alike, formal and informal humanitarian initiatives have sought to provide for diverse beneficiaries. Meanwhile, the ‘refugee crisis’ has opened up a booming humanitarian marketplace in Greece. This article draws on my long-term research in the field of asylum in Greece, and ethnographic data from research on ‘social solidarity clinics and pharmacies,’ grassroots initiatives meant to provide medicines and care to citizens and non-citizens in need. I argue that the Greek case signals the emergence of what I call ‘humanitarian citizenship’ on European margins: the replacement of both social rights (afforded to citizens) and human rights (afforded to refugees) with humanitarian logics and sentiments, positioning both citizens and non-citizens in a partially shared continuum of precarity.     

ON THE MORALITY OF GUINEA‐PIG RECRUITMENT

Can it be wrong to conduct medical research on human subjects even with their informed consent and even when the transaction between the subjects and researchers is expected to be mutually beneficial? This question is especially pressing today in light of the rise of a semi‐professional class of ‘guinea pigs’– human research subjects that sell researchers a right of access to their bodies in exchange for money. Can these exchanges be morally problematic even when they are consensual and mutually beneficial? I argue that there are two general kinds of concern one can have about such transactions – concerns about the nature of what is sold and concerns about the conditions in which the selling occurs. The former involves worries about degradation and the possible wrongness of selling a right of access to one's body. These worries, I argue, are not very serious. The latter involves worries about coercion, exploitation, and undue influence – about how, by virtue of their ignorance, impulsiveness, or desperation, guinea pigs can be taken advantage of by medical researchers. These worries are quite serious but I argue that, at least in cases where the exchange between guinea pigs and researchers is consensual and mutually beneficial, they do not raise insurmountable moral problems.     

Emancipating ethics: an autonomist reading of Islamic forms of life in Russia

This article advances a framework aimed at capturing the political life of ethical intensity by putting autonomist theory in resonance with ethnographic material pertaining to quietist Muslim milieus in post-Soviet Russia. The emancipatory and prefigurative potential of collective projects of self-legislation – in this case, ‘halal living’ – are explored through the notions of ethical form of life and Rule/Law. It will be argued that autonomist theory (a) is helpful in conceptualizing the friction between ethical projects (however quietist) and dominant moral/political orders; (b) has the potential to broaden anthropological conversations on virtue beyond existing fault lines (notably between what I call ‘traditionist’ and ‘liberal’ theoretical families) as well as conceptual silos (‘religion', ‘secularity’); and (c) can help us envision a radical, politically engaged anthropology of ethics.     

Dispossession in the Age of Humanity: Human Rights,Citizenship, and Indigeneity in the Central Kalahari

Over the past 50 years, the Central Kalahari region of Botswana became a site of struggles over land and resources rights, identity, citizenship, and indigeneity. The policies of the government of Botswana towards the San express the dominant Tswana perspectives on humanity and what is considered human. Since independence in 1966 the goals of the government of Botswana have been to sedentarise the San and to transform them into ‘modern’ citizens who live in villages, keep livestock, and engage in agriculture and business. In this paper I analyse the case of the people of the Central Kalahari Game Reserve and their battles over rights and recognition as citizens of Botswana and as human beings. I examine how the government's decisions to deny Central Kalahari residents their distinct rights to natural resources such as wildlife—in spite of High Court decisions in the San's favour—as well as rights to services and development shared by other citizens—are linked to the dominant Tswana understanding of humanity.     

‘Agent Plus’ and ‘Practical Reasoner’: A Comparative Study of the Ethical Person

This paper explores an understanding of the person in terms of practical reason. Based on my fieldwork among the Jenu Kurumba and on ethnographic data on four other communities, I analyse how these five communities conceptualise the ethical person. To understand these concepts, I consult studies of an anthropology of ethics concerned with practical reason. Additionally I draw on Charles Taylor's concept of the ‘agent plus’ and Alasdair MacIntyre's notion of the ‘practical reasoner’. I argue that both Neo-Aristotelian notions are fundamentally important for understanding the concepts of the ethical person among the five cultural formations investigated in this paper.     

Owning Genetic Information and Gene Enhancement Techniques: Why Privacy and Property Rights May Undermine Social Control of the Human Genome

In this article I argue that the proper subjects of intangible property claims include medical records, genetic profiles, and gene enhancement techniques. Coupled with a right to privacy these intangible property rights allow individuals a zone of control that will, in most cases, justifiably exclude governmental or societal invasions into private domains. I argue that the threshold for overriding privacy rights and intangible property rights is higher, in relation to genetic enhancement techniques and sensitive personal information, than is commonly suggested. Once the bar is raised, so-to-speak, the burden of overriding it is formidable. Thus many policy decisions that have been recently proposed or enacted – citywide audio and video surveillance, law enforcement DNA sweeps, genetic profiling, national bans on genetic testing and enhancement of humans, to name a few – will have to be backed by very strong arguments.     

Sorcery and the dividual in Australia

In this article I present an analysis of Australian Aboriginal sorcery, applying concepts from the New Melanesian Ethnography. My starting‐point is Keen's approach to magic among the Yolngu, which engages Strathern's concept of the dividual, but which focuses on the extension of partible aspects of the person in space and time. Building on Keen's analysis, I draw on ethnographic material from Cape York Peninsula to argue that Aboriginal sorcery might be understood not only as the extension of partible aspects of the person, but also in terms of the interplay between the internal divisions and external connections of dividual personhood, linking that interplay to the various invasive techniques understood to be employed by sorcerers. On that basis, I argue that, in the central Peninsula, sorcery beliefs are best understood as forms of ‘indigenous analysis’ (Strathern) or ‘naïve critique’ (Kapferer) that simultaneously articulate and obscure the anxieties that inhere in postcolonial Aboriginal sociality.     

Contentious Europeanization: The Paradox of Becoming European through Anti-Patent Activism

Through an ethnographic account of a pan-European activist campaign against software patents, I investigate how European identities emerge through contention rather than consensus. I apply anthropological literature on Europeanization and on intellectual property rights in order to rethink conventional theories about the relationship between European integration and the formation of European identity. I develop the term ‘contentious Europeanization’ to denote a set of identities and approaches to Europe that are intimately linked to EU policy-making, yet purport to develop an alternative Europe. More broadly, I argue that information technology and intellectual property law operate as frameworks for the formation of contentious political subjectivities.     

What really is the nature of suffering? Three problems with Eric Cassell’s concept of distress

Eric Cassell famously defined suffering as a person’s severe distress at a threat to their personal integrity. This article draws attention to some problems with the concept of distress in this theory. In particular, I argue that Cassell’s theory turns on distress but does not define it, which, in light of the complexity of distress, problematizes suffering in three ways: first, suffering becomes too equivocal to apply in at least some cases that Cassell nevertheless identifies as suffering; second, Cassell’s account does not explain what sort of experience suffering is, resulting in theoretical and practical difficulties in distinguishing it from other medical conditions; third, there is good reason to believe that, in medical contexts, ‘distress’ just means ‘suffering’ or some cognate concept not yet distinguished from it, rendering Cassell’s theory circular. I consider a rebuttal to my objections and reply, concluding that Cassell’s theory of suffering needs a definition of distress to settle what the nature of suffering really is.     

Consent’s dominion: Dementia and prior consent to sexual relations

In this paper, I answer the following question: suppose that two individuals, C and D, have been in a long‐term committed relationship, and D now has dementia, while C is competent; if D agrees to have sex with C, is it permissible for C to have sex with D? Ultimately, I defend the view that, under certain conditions, D can give valid consent to sex with C, rendering sex between them permissible. Specifically, I argue that there is compelling reason to endorse the Prior Consent Thesis, which states the following: D, when competent, can give valid prior consent to sex with her competent partner (C) that will take place after she has dementia, assuming that D is the same person as she was when she gave prior consent, meaning that, if D, when competent, gave prior consent to sex with C, then C may permissibly have sex with D. In Section 2, I explain both the background and the existing literature on this issue. In Section 3, I outline relevant stipulations about the kinds of cases I will be examining. In Section 4, I defend the Prior Consent Thesis. And, in Section 5, I address objections to the Prior Consent Thesis.     

VIRTUE ETHICS AND THE SELECTION OF CHILDREN WITH IMPAIRMENTS: A REPLY TO ROSALIND MCDOUGALL

In ‘Parental Virtues: A New Way of Thinking about the Morality of Reproductive Actions’ Rosalind McDougall proposes a virtue‐based framework to assess the morality of child selection. Applying the virtue‐based account to the selection of children with impairments does not lead, according to McDougall, to an unequivocal answer to the morality of selecting impaired children. In ‘Impairment, Flourishing, and the Moral Nature of Parenthood,’ she also applies the virtue‐based account to the discussion of child selection, and claims that couples with an impairment are morally justified in selecting a child with the same impairment. This claim, she maintains, reveals that the flourishing of a child should be understood as requiring environment‐specific characteristics. I argue that McDougall's argument begs the question. More importantly, it does not do justice to virtue ethics. I also question to what extent a virtue ethics framework can be successfully applied to discussions about the moral permissibility of reproductive actions.