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.     

Torture by Cieng: ethical theory meets social practice among the Dinka Agaar of south Sudan

Here I detail violence in South Sudan by first discussing a specific Dinka Agaar practice alongside existing discourses on the social aspects of violence and universal human rights, then I show how these acts had meaning and purpose using data from personal accounts of violence. I posit that the violence described was consistent with Dinka Agaar concepts of justice and basic human rights and that it cannot be judged against any universal human rights standard, devoid of local context or of an overarching metanarrative. These events highlight conflicting subjectivities, ethical norms, and the painful difficulties inherent to advocacy in areas of conflict. Viewed from the perspective of the larger social unit, it is easy to see how violence was required to end violence. However, witnessing punitive violence purposefully enacted on innocent individuals to achieve peace has the potential to create conflicting positions that modern anthropological discourse cannot reconcile.     

Bodily rights and collective claims: the work of legal activists in interpreting reproductive and maternal rights in India

This article engages with anthropological approaches to the study of global human rights discourses around reproductive and maternal health in India. Whether couched in the language of human rights or of other social justice frameworks, different forms of claims‐making in India exist in tandem and correspond to particular traditions of activism and struggle. Universal reproductive rights language remains a discourse aimed at the state in India, where the primary purpose is to demand greater accountability in the domain of policy and governance. Outside of these spheres, other languages are strategically chosen by activists for their greater resonance in addressing individual cases of women claiming reproductive violence within the context of the family as well as localized histories of feminist struggle and social justice. In focusing on the work of legal activists and the discourses which inform their interventions, this article seeks to understand how the language of reproductive rights is used in the context of India, not as a `Western import' which is adapted to local contexts, but rather as one of multiple frameworks of claims‐making drawn upon by legal activists emerging from distinct histories of struggle for gender equality and social justice.     

Afterword to "Anthropology and Human Rights in a New Key": The Social Life of Human Rights

In this article, I argue for an ethnographic approach to human rights that recognizes the plural and fragmentary nature of the international rights regime and the ideological promiscuity of rights talk. Instead of determining in advance the social or political character of rights, anthropologists could profitably draw from the insights of early-20th-century "legal realists" and look closely at the underlying assumptions and hidden practices of political and legal processes. Studying the "social life of human rights" would involve focusing on, inter alia, the performative dimensions of human rights, the dynamics of social mobilization, and the attitudinal changes of elite and nonelite social actors towards formulations of "rights" and "justice," both inside and outside the legal process. I conclude with a review of recent anthropological research on human rights epistemology and evaluate its implications for human rights policy.     

A global biodiversity fund to implement distributive justice for genetic resources

This article examines the question of who has a right to control and benefit from genetic resources globally. To this end it draws on different accounts in the resource rights literature with a focus on the specific features that distinguish genetic resources from other types of natural resources. It will be argued that due to the intangible and non‐territorial nature of genetic resources, territorial rights over these resources are difficult to maintain. Moreover, the vulnerability of genetic resources implies that much cost and effort is required to protect them. I will argue that not only benefits resulting from the use of genetic resources but also these costs associated with their protection should be an object of distributive justice. To accommodate these two points I will introduce the model of a global biodiversity fund that could replace the bilateral access and benefit sharing negotiations suggested by the Convention on Biological Diversity.     

Ethics and genetics in Latin America

Genetic research in human beings poses deep ethical problems, one being the problem of distributive justice. If we suppose that genetic technologies are able to produce visible benefits for the well being of people, and that these benefits are affordable to only a favored portion of society, then the consequence is obvious. We are introducing a new source of inequality. In the first section of this paper, I attempt to justify some concern for the distributive consequences of applying genetics to human beings. This concern transcends a mere preoccupation for material equality. I argue that genetic inequality can undermine the very basis of social cooperation, at least regarding health care. The second section is more practical. My aim is to defend how, at least in some legal and cultural frameworks (such as those clearly apparent in some Latin American countries), the undesired distributive consequences of genetics are more likely to arise and more difficult to avoid.     

Navigating conflicts of justice in the use of race and ethnicity in precision medicine

Given the sordid history of injustices linking genetics to race and ethnicity, considerations of justice are central to ensuring the responsible development of precision medicine programmes around the world. While considerations of justice may be in tension with other areas of concern, such as scientific value or privacy, there are also tensions between different aspects of justice. This paper focuses on three particular aspects of justice relevant to this precision medicine: social justice, distributive justice and human rights. We describe the implications of each for the use of race and ethnicity in precision medicine, and also how they intersect and potentially conflict with each another. By attending to these intersections, we aim to enrich and add nuance to debates over how best to proceed with precision medicine initiatives.     

No guarantees: Symposium on Black Feminist Thought

In this article, I describe four main ideas of Black Feminist Thought as well as the social and intellectual context that influenced how and why I wrote the book. Building on this foundation, I explore how the articles in the Symposium both connect with these key ideas as well as point to ongoing challenges for black feminism. Because there are no guarantees that Black feminism will persist, the richness of the different ways that these contemporary scholars read Black Feminist Thought provides important guidance for similar knowledge projects that are placed in service to social justice.     

Reconciliation and Revenge in Post-Apartheid South Africa. Rethinking Legal Pluralism and Human Rights

Human rights are a central element in the new governmental project in the new South Africa, and this article traces some of the specific forms of connection and disconnection between notions of justice found in townships of the Vaal and rights discourses as articulated by the Truth and Reconciliation Commission. The introduction of human rights in post-apartheid South Africa has had varied social effects. Religious values and human rights discourse have converged on the notion of reconciliation on the basis of shared value orientations and institutional structures. There are clear divergences, however, between human rights ideas and the notions of justice expressed in local lekgotla, or township courts, which emphasize punishment and retribution. The article concludes that the plurality of legal orders in South Africa results not from systemic relations between law and society but from multiple forms of social action seeking to alter the direction of social change in the area of justice within the context of the nation-building project of the post-apartheid state.     

A "Consumer's Right" to Choose a Midwife: Shifting Meanings for Reproductive Rights under Neoliberalism

The "right to choose" has long served as the ideological rallying cry for reproductive rights activists. Yet critical attention to the social, political, and economic conditions under which individuals make such choices has been central to anthropological research on reproduction. In the context of neoliberal public policy shifts that favor trust in the market to remedy all social and economic inequality, I explore how women's reproductive rights are becoming characterized by one's ability to consume uneven reproductive "choices." Based on my ethnographic fieldwork with midwifery supporters in Virginia, I examine how organizers have begun to utilize "consumer rights" rhetoric in their struggle for legal access to midwives. One often-unintended result has been intensified divisions within this movement, particularly as low-income "homebirthers" feel unable to claim the identity of "consumer." I use Virginia as a case study to raise broader questions about women's shifting strategies toward securing reproductive rights under neoliberalism.     

Biological explanations and social responsibility

The aim of this paper is to show that critics of biological explanations of human nature may be granting too much to those who oppose such explanations when they argue that the truth of genetic determinism implies an end to critical evaluation and reform of our social institutions. This is the case because when we argue that biological determinism exempts us from social critique we are erroneously presupposing that our social values, practices, and institutions have nothing to do with what makes biological explanations troublesome. My argument is that what constitutes a problem for those who are concerned with social justice is not the fact that particular behaviours may be genetically determined, but the fact that our value system, and social institutions create the conditions that make such behaviours problematic. Thus, I will argue that even if genetic determinism were correct, the requirement of assessing and transforming our social practices and institutions would be far from superfluous. Biology is rarely destiny for human beings and the institutions they create.     

‘I was celebrating the justice that the victims got’: exploring irreconciliation among Bangladeshi human rights activists in London

This essay investigates transnational human rights activist networks seeking justice for war crimes committed during the Bangladesh War of 1971, especially in light of the International Crimes Tribunal in Dhaka, Bangladesh. Focusing on activists in London, it demonstrates the need to engage with transitional justice initiatives discursively and ethnographically in order to avoid losing sight of the ways in which uses of human rights concepts can veil power dimensions through universalist legalistic abstractions. The essay explores engagements with atrocities of the war by mapping the travel and uses of human rights tropes to articulate claims of justice. It showcases how in addressing the violence of the Bangladesh War, victor justice and punishment are emphasized while futures are imagined in which enemies no longer exist. In the examples, a language of justice is employed to call for prosecution, but justice is reframed so that it is equated with the impossibility of reconciling people on opposing sides during the war.     

Evolutionary dynamics of n-player games played by relatives

One of the core concepts in social evolution theory is kin selection. Kin selection provides a perspective to understand how natural selection operates when genetically similar individuals are likely to interact. A family-structured population is an excellent example of this, where relatives are engaged in social interactions. Consequences of such social interactions are often described in game-theoretical frameworks, but there is a growing consensus that a naive inclusive fitness accounting with dyadic relatedness coefficients are of limited use when non-additive fitness effects are essential in those situations. Here, I provide a general framework to analyse multiplayer interactions among relatives. Two important results follow from my analysis. First, it is generally necessary to know the n-tuple genetic association of family members when n individuals are engaged in social interactions. However, as a second result, I found that, for a special class of games, we need only measures of lower-order genetic association to fully describe its evolutionary dynamics. I introduce the concept of degree of the game and show how this degree is related to the degree of genetic association.     

JUSTICE, STIGMA, AND THE NEW EPIDEMIOLOGY OF HEALTH DISPARITIES

Recent research in epidemiology has identified a number of factors beyond access to medical care that contribute to health disparities. Among the so-called socioeconomic determinants of health are income, education, and the distribution of social capital. One factor that has been overlooked in this discussion is the effect that stigmatization can have on health. In this paper, I identify two ways that social stigma can create health disparities: directly by impacting health-care seeking behaviour and indirectly through the internalization of negative interpersonal judgments. I then argue that social arrangements that foster self-respect can reduce the impact of stigmatization on health disparities. I conclude by showing how John Rawls' conception of justice can be used to address the intersection of stigma, health, and self-respect, in contrast to critics of his position, who have seen him as excessively focused on the allocation of material goods.     

Teaching global bioethics

We live in a world with enormous disparities in health. The life expectancy in Japan is 80 years; in Malawi, 40 years. The under-five mortality in Norway is 4/1000; in Sierra Leone, 316/1000. The situation is actually worse than these figures suggest because average rates tend to mask inequalities within a country. Several presidents of the IAB have urged bioethicists to attend to global disparities and to broaden the scope of bioethics. For the last six years I have tried to do just that. In this paper, I report and reflect on my attempts to teach bioethics in ways that address global health and justice. I then discuss ways to address key ethical issues in global health: the problem of inequalities; the nature of the duty to assist; the importance of the duty not to harm; the difference between a cosmopolitan and a political view of justice. I also discuss how teaching about global health may help to shift the emphasis in bioethics--from sensational cases to everyday matters, from autonomy and justice, and from access to healthcare to the social determinants of health. At the end of my paper, I reflect on questions that I have not resolved: how to delineate the scope of bioethics, whether my approach over-politicises bioethics, and how to understand the responsibilities of bioethicists.     

Global Health Care Justice,Delivery Doctors and Assisted Reproduction: Taking a Note From Catholic Social Teachings

This article will examine the Catholic concept of global justice within a health care framework as it relates to women's needs for delivery doctors in the developing world and women's demands for assisted reproduction in the developed world. I will first discuss justice as a theory, situating it within Catholic social teachings. The Catholic perspective on global justice in health care demands that everyone have access to basic needs before elective treatments are offered to the wealthy. After exploring specific discrepancies in global health care justice, I will point to the need for delivery doctors in the developing world to provide basic assistance to women who hazard many pregnancies as a priority before offering assisted reproduction to women in the developed world. The wide disparities between maternal health in the developing world and elective fertility treatments in the developed world are clearly unjust within Catholic social teachings. I conclude this article by offering policy suggestions for moving closer to health care justice via doctor distribution.     

RETRACING LIBERALISM AND REMAKING NATURE: DESIGNER CHILDREN,RESEARCH EMBRYOS,AND FEATHERLESS CHICKENS

Liberal theory seeks to achieve toleration, civil peace, and mutual respect in pluralistic societies by making public policy without reference to arguments arising from within formative ideals about what gives value to human life. Does it make sense to set aside such conceptions of the good when it comes to controversies about stem cell research and the genetic engineering of people or animals? Whether it is reasonable to bracket our worldviews in such cases depends on how we answer the moral questions that the use of these biotechnologies presuppose. I argue that the moral language of liberal justice – of rights and duties, interests and opportunities, freedom and consent, equality and fairness – cannot speak to these underlying concerns about what the human embryo is, why the natural lottery matters to us, and whether ‘animal nature’ is worth preserving. I conclude that liberal theory is incapable of furnishing a coherent or desirable account to govern the way we use our emerging powers of biotechnology.     

Genetic enhancement--a threat to human rights?

Genetic enhancement is the modification of the human genome for the purpose of improving capacities or 'adding in' desired characteristics. Although this technology is still largely futuristic, debate over the moral issues it raises has been significant. George Annas has recently leveled a new attack against genetic enhancement, drawing on human rights as his primary weapon. I argue that Annas' appeal to human rights ultimately falls flat, and so provides no good reason to object to genetic technology. Moreover, this argument is an example of the broader problem of appealing to human rights as a panacea for ethical problems. Human rights, it is often claimed, are 'trumps': if it can be shown that a proposed technology violates human rights, then it must be cast aside. But human rights are neither a panacea for ethical problems nor a trump card. If they are drafted into the service of an argument, it must be shown that an actual human rights violation will occur. Annas' argument against genetic technology fails to do just this. I shall conclude that his appeal to human rights adds little to the debate over the ethical questions raised by genetic technology.     

Reproductive justice: Non-interference or non-domination?

The reproductive justice movement started by black women’s rights activists made its way into the academic literature as an intersectional approach to women’s reproductive autonomy. While there are many scholars who now employ the term ‘reproductive justice’ in their research, few have taken up the task of explaining what ‘justice’ entails in reproductive justice. In this paper I take up part of this work and attempt to clarify the relevant kind of freedom an adequate theory of reproductive justice would postulate. To do so, I compare two approaches to reproductive freedom: an approach based on freedom as non-interference and an approach based on freedom as non-domination. I then argue that the non-domination approach better fits the ideals of the reproductive justice movement as set forth by its founders and should be treated as one of the necessary conditions in any non-ideal account of reproductive justice. Towards the end, I single out epistemic non-domination as crucial in shaping the narrative around reproductive justice.     

Transnational Human Rights and Local Activism: Mapping the Middle

How do transnational ideas such as human rights approaches to violence against women become meaningful in local social settings? How do they move across the gap between a cosmopolitan awareness of human rights and local sociocultural understandings of gender and family? Intermediaries such as community leaders, nongovernmental organization participants, and social movement activists play a critical role in translating ideas from the global arena down and from local arenas up. These are people who understand both the worlds of transnational human rights and local cultural practices and who can look both ways. They are powerful in that they serve as knowledge brokers between culturally distinct social worlds, but they are also vulnerable to manipulation and subversion by states and communities. In this article, I theorize the process of translation and argue that anthropological analysis of translators helps to explain how human rights ideas and interventions circulate around the world and transform social life.