Research integrity and rights of indigenous peoples: appropriating Foucault's critique of knowledge/power

In this paper I appropriate the philosophical critique of Michel Foucault as it applies to the engagement of Western science and indigenous peoples in the context of biomedical research. The science of population genetics, specifically as pursued in the Human Genome Diversity Project, is the obvious example to illustrate (a) the contraposition of modern science and 'indigenous science', (b) the tendency to depreciate and marginalize indigenous knowledge systems, and (c) the subsumption of indigenous moral preferences in the juridical armature of international human rights law. I suggest that international bioethicists may learn from Foucault's critique, specifically of the need for vigilance about the knowledge/power relation expressed by the contraposition of modern science and 'indigeneity'.     

‘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.     

In whose interest? Policy and politics in assisted reproduction

This paper interprets the British legislative process that initiated the first comprehensive national regulation of embryo research and fertility services and examines subsequent efforts to restrain the assisted reproduction industry. After describing and evaluating British regulatory measures, I consider successive failures to control the assisted reproduction industry in the US. I discuss disparities between UK and US regulatory initiatives and their bearing on regulation in other countries. Then I turn to the political and social structures in which the assisted reproduction industry is embedded. I argue that regulatory bodies are seldom neutral arbiters. They tend to respond most readily to special interests and neglect strategies that could more effectively meet the health needs of the people they represent. Neither national nor international bodies have aggressively pursued policies to harness the industry, reduce infertility rates, or meet the needs of people whose fertility is threatened by substandard healthcare and environmental neglect. In conclusion, I consider recent initiatives by activist groups to mount an alternative response to the industry's current practices and build a transnational reproductive justice movement.     

Research for Change versus Research as Change: Lessons from a Mujerista Participatory Research Team

In this article, I aim to further the discussion of engaged research in anthropology and education by examining the unique changes promoted by participatory research in contrast to policy-oriented activist research models. Drawing on my work with Latina immigrant mothers in a school reform movement, I argue for a Latina feminist view of participatory research that illuminates and builds on Latina women's capacities for social critique and transformative resistance.  [participatory research, activist anthropology, Latino parents, school reform]     

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.     

Beyond ‘Riot Porn’: Protest Video and the Production of Unruly Subjects

From the globalization protests of the previous decade to the more recent Occupy Movement, activists have embraced the use of digital video. Many appropriations of the technology, including those by human rights advocates, rest on the theory that ‘seeing is believing’ and understand video to be uniquely suited to forms of truth telling such as witnessing, documenting and reporting. While I encountered such realist uses of video during fieldwork with direct action movements in the former Yugoslavia, activists are also preoccupied with videos depicting the most physical confrontations with the police, videos they sometimes referred to as ‘riot porn’. They engage these videos for the sensory, affective and bodily experiences they facilitate. Indeed, activist practices around and claims for video indicate that they understand video as a technology of the self, using it to forge emotional relationships with activists elsewhere, steel themselves for physical confrontation and cultivate new political desires.     

Some Recent Developments in Evolutionary Approaches to the Study of Human Cognition and Behavior

In this paper I review some theoretical exchanges and empiricalresults from recent work on human behavior and cognition in thehope of indicating some productive avenues for critical engagement.I focus particular attention on methodological debates between Evolutionary Psychologists and behavioral ecologists. I argue for a broader and more encompassing approach to the evolutionarily based study of human behavior and cognition than either of these two rivals present.     

Data sharing across biobanks: epistemic values,data mutability and data incommensurability

Despite the centrality of epistemic issues in biobank knowledge generation, there is currently a lacuna in research addressing the epistemic assumptions of biobank science and data sharing. The article addresses this lacuna. Using the insights of philosophical and sociological analysis, we examine standardization and harmonization and central challenges biobank data-sharing faces. We defend two central epistemic values, namely “spatial and temporal translatability” and “epistemic adequacy” which foster effective biobank knowledge generation. The first refers to the way in which biobank data need to be re-usable and re-purposable by bioscience researchers who did not create them. Given the perennial issues of data mutability and incommensurability, we also propose “epistemic adequacy.” In uncovering the social and epistemic foundations of biobank science, we emphasize issues essential for achieving effective and transparent biobank practice and productive communication and engagement with the public about the nature, potential and limits of biobanks.     

Introduction to "Anthropology and Human Rights in a New Key"

In this "In Focus" introduction, I begin by offering an overview of anthropology's engagements with human rights following the American Anthropological Association's (AAA) 1947 "Statement on Human Rights." After offering a rereading of the Statement, I describe the two major anthropological orientations to human rights that emerged in the 1980s and 1990s, following several decades of relative disengagement. Finally, I locate the articles in relation to this history and indicate how, when taken as a whole, they express a new key or register within which human rights can be studied, critiqued, and advanced through anthropological forms of knowledge. This "In Focus" is in part an argument for an essentially ecumenical anthropology of human rights, one that can tolerate, and indeed encourage, approaches that are both fundamentally critical of contemporary human rights regimes and politically or ethically committed to these same regimes.     

On the Limitations of Biological Knowledge

Scientific knowledge is grounded in a particular epistemology and, owing to the requirements of that epistemology, possesses limitations. Some limitations are intrinsic, in the sense that they depend inherently on the nature of scientific knowledge; others are contingent, depending on the present state of knowledge, including technology. Understanding limitations facilitates scientific research because one can then recognize when one is confronted by a limitation, as opposed to simply being unable to solve a problem within the existing bounds of possibility. In the hope that the role of limiting factors can be brought more clearly into focus and discussed, we consider several sources of limitation as they apply to biological knowledge: mathematical complexity, experimental constraints, validation, knowledge discovery, and human intellectual capacity.     

Defending the social value of knowledge as a safeguard for public trust

The ‘socially valuable knowledge’ (SVK) principle has been widely acknowledged as one of the most important guiding principles for biomedical research involving human subjects. The principle states that the potential of producing socially valuable knowledge is a necessary requirement, although not sufficient, for the ethical conduct of research projects. This is due to the assumption that the social value of knowledge avoids exploitation of research subjects and justifies the use of health resources. However, more recently, several authors have started interrogating the validity of SVK in research and offered various lines of argument against the SVK principle as a necessary constraint to research. In this article, I will reconstruct the main arguments of this discussion between defenders and debunkers of the SVK principle and offer a third way to consider the social value of knowledge in research studies. I will argue that the social value of knowledge can be supported by an independent justification. This justification of the SVK principle addresses the rationality and common interest of researchers. Thus, I will introduce the SVK principle as a safeguarding principle for public trust based on a conceptual framework by Alex John London. My approach justifies keeping the principle as a precautionary and rational requirement for human health research that all rational stakeholders can agree upon.     

Against the inalienable right to withdraw from research

In this paper I argue, against the current consensus, that the right to withdraw from research is sometimes alienable. In other words, research subjects are sometimes morally permitted to waive their right to withdraw. The argument proceeds in three major steps. In the first step, I argue that rights typically should be presumed alienable, both because that is not illegitimately coercive and because the general paternalistic motivation for keeping them inalienable is untenable. In the second step of the argument, I consider three special characteristics of the right to withdraw, first that its waiver might be exploitative, second that research involves intimate bodily access, and third that it is irreversible. I argue that none of these characteristics justify an inalienable right to withdraw. In the third step, I examine four considerations often taken to justify various other allegedly inalienable rights: concerns about treating yourself merely as a means as might be the case in suicide, concerns about revoking all your future freedoms in slavery contracts, the resolution of coordination problems, and public interest. I argue that the motivations involved in these four types of situations do not apply to the right to withdraw from research.     

Culture and Rights after Culture and Rights

Building on a critical, theoretical approach outlined in Culture and Rights: Anthropological Perspectives (Cowan et al. 2001a), I posit rights processes as complex and contradictory: Both enabling and constraining, they produce new subjectivities and social relations and entail unintended consequences. To encourage interdisciplinary engagement on these themes, I explore selected texts that consider the relationship between culture and rights, addressing two literatures: (1) debates on culture, rights, and recognition in the context of multiculturalism among political philosophers and (2) an emerging literature by anthropologists, feminists, critical legal scholars, and engaged practitioners analyzing empirical cases. Although political philosophers elucidate ethical implications and clarify political projects, an outmoded arsenal of theoretical concepts of "culture,""society," and "the individual" has hampered their debates. When accounts are both theoretically informed and empirically grounded, contradictions, ambiguities, and impasses of culture and rights are more fully explored and the liberal model of rights and multiculturalism is more open to interrogation.     

Artificial womb technology and clinical translation: Innovative treatment or medical research?

In 2017 and 2019, two research teams claimed ‘proof of principle’ for artificial womb technology (AWT). AWT has long been a subject of speculation in bioethical literature, with broad consensus that it is a welcome development. Despite this, little attention is afforded to more immediate ethical problems in the development of AWT, particularly as an alternative to neonatal intensive care. To start this conversation, I consider whether experimental AWT is innovative treatment or medical research. The research–treatment distinction, pervasive in regulation worldwide, is intended to isolate research activities and subject them to a greater degree of oversight. I argue that there is a tendency in the literature to conceptualize AWT for partial ectogenesis as innovative treatment. However, there are sufficiently serious ethical concerns with experimental AWT that mean that it must not be first used on humans on the basis that it is a ‘beneficial treatment’. First, I outline the prospects for translation of AWT animal studies into treatment for human preterms. Second, I challenge the conceptualizations of experimental AWT as innovative treatment. It must be considered medical research to reflect the investigatory nature of the process and guarantee sufficient protections for subjects. Identifying that AWT is research is crucial in formulating further ethico-legal questions regarding the experimental use of AWT. Third, I demonstrate that clinical trials will be a necessary part of the clinical translation of AWT because of requirements laid out by regulators. I consider the justification for clinical trials and highlight some of the crucial ethical questions about the conditions under which they should proceed.     

Endangered Forest, Endangered People: Environmentalist Representations of Indigenous Knowledge

Since 1987, Penan foragers in Malaysia have been increasingly affected by the activities of logging companies, and have protested this with blockades. Simultaneously, they have become the focus of a broad-based international environmental campaign. This paper examines the rhetoric of that campaign. In particular, I examine the ways in which Western environmentalists have constructed Penan land rights with reference to Penan knowledge of the landscape and of the biotic elements which exist there. Further, I consider how environmentalists have drawn on ethnographic accounts, and how those accounts are transformed in the process of generating images deployed in the campaign.     

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.     

Improving the dialogue between public health and ecosystem science on antimicrobial resistance

The concept of health has evolved markedly from a bio-medical, mechanistic model to include an interdisciplinary perspective where human, animal and ecosystem health are integrated. One Health, EcoHealth and Planetary Health are examples of approaches to health advocating collaboration and interdisciplinarity at multiple levels. In practice, successful integration has been challenging and in particular, understanding of the ecosystem component of health lags behind the human and animal components. Antimicrobial resistance is an important threat to human health, which develops, is maintained and transmitted at the human–animal–environment interface. While the human and livestock components of resistance are well understood, this is not the case for the ecosystem component. This gap in knowledge leads to a poor representation of the environmental dimension of antimicrobial resistance in key policy documents and in interdisciplinary work around this issue. We interviewed a group of leading researchers in public health and ecology to explore their perceptions on the integration of ecosystem and public health research in the context of antimicrobial resistance. Experts from both fields considered that research on antimicrobial resistance is only beginning to consider ecosystems. They highlighted various barriers that have contributed to limited integration, such as conceptual barriers, and a lack of knowledge translators as facilitators. Better interdisciplinary integration is needed to address the challenge of antimicrobial resistance. Improving the dialogues between the disciplines is a necessary first step in this process. Greater engagement of ecologists is needed to build a more complete understanding of the role of ecosystems in human health, and identify how human interactions with ecosystems can both contribute to, and restrict, the development of antimicrobial resistance.     

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.