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In this essay, I argue that to create a genomics that offers more gifts than weights, central attention must be paid to questions of justice. This will require expanding bioethical imaginations so that they grasp and can respond to questions of structural inequity. It will necessitate building novel coalitions and collaborations that turn the attention of bioethical governance away from narrow individual questions such as, "Do I consent?" and toward the broader collective question, is this just? What kind of lives and collectivities are made possible? What rights and principles should govern them? The essay ends with one example of this novel coalition building arising from the Science and Justice Research Center at the University of California, Santa Cruz. It draws lessons from this effort to build new alliances that bridge the social sciences and natural sciences, arts and engineering, to create new kinds of training and thinking that create a genomics that more adequately responds to fundamental questions of justice.

Many people hope for a future in which genomics and its offspring (i.e. personalized medicine) achieve their promises: new cures and longer and better lives for all. However, for that to come to pass, this chapter argues that the field must support meaningful, thoughtful speech about that which it does. It provides an account of the history of genomics that brings to light the choices made by architects of genomics to set to one side important questions about the meaning of their endeavours. For decades the field focused on creating data and tools, a project they understood as separate from forging knowledge and meaning. As a result, genomics became susceptible to inadvertently and unreflectively fostering racial and capitalist logics that exclude many from its benefits. Drawing upon the work of Hannah Arendt, the chapter presents a model of thoughtfulness capable of fostering a genomics more able to respond to the needs and cares of a more diverse range of lives. It argues that cultivating this kind of response-able, thoughtful genomics should be the field’s next milestone.

At stake in the debate about personal genomics is what kind of person can be trusted to interpret genomes. Deciding this hinges not just on determining if consumers can interpret genomic information, but on deciding which biological and medical experts (if any) can perform these interpretive acts. Understanding why personal genomics has generated such tension and attention requires bringing these struggles, over who can interpret ‘the code of life’, into focus. While debates about personal genomics focus largely on relatively narrow issues of fraud and deception, this emerging new scientific and political terrain poses more fundamental questions about how the study of biological life, as well as the organization of democratic life, should proceed in genomic times.

Over the course of the last five years, a worldwide financial crisis combined with plummeting trust in institutions has led to significant changes in the organization and funding of research and education. These changes have troubled the very foundations of universities, but they also have created new opportunities to re-imagine and re-form practices of knowledge production, a key concern of Science and Technology Studies (S&TS) and feminist science studies (FSS). Here we reflect on how these changing institutional landscapes as well as increased demands for substantive ethics training create openings for novel institutional practices that embody core insights of S&TS and FSS. Specifically, we describe the creation of the Science & Justice Graduate Training Program at University of California, Santa Cruz. Taking its inspiration from recent feminist science studies re-workings of responsibility as response-ability, the SJTP created novel pedagogical and research practices that enabled collaboration across all divisions of the University. A focus on justice proved critical to our efforts. In its call to attend to the first principles that shape collective life, justice allowed us to open up the space of research ethics in novel ways, and helped us to create the basis for working across disciplines on shared problems and objects. As S&TS and FSS increasingly move toward generating new modes of gathering and practices of care, we suggest that justice might open up models of collectivity that fit better with the current zeitgeist and produce the kind of responsive knowledge and institutions long imagined.

Biological samples collected from indigenous communities from the mid-20th century for scientific study and preserved in freezers of the Global North have been at the center of a number of controversies. This essay explores why the problem of indigenous biospecimens has returned to critical attention frequently over the past two decades, and why and how Science and Technology Studies should attend to this problem. We propose that mutation – the variously advantageous, deleterious, or neutral mechanism of biological change – can provide a conceptual and analogical resource for reckoning with unexpected problems created by the persistence of frozen indigenous biospecimens. Mutations transcend dichotomies of premodern/modern, pro-science/anti-science, and north/south, inviting us to focus on entanglements and interdependencies. Freezing biospecimens induces mutations in indigenous populations, in the scientists who collected and stored such specimens, and in the specimens themselves. The jumbling of timescales introduced by practices of freezing generates new ethical problems: problems that become ever more acute as the supposed immortality of frozen samples meets the mortality of the scientists who maintain them. More broadly, we propose that an ‘abductive’ approach to Science and Technology Studies theories of co-production can direct attention to the work of temporality in the ongoing alignment of social and technical orders. Attending to the unfolding and mutating vital legacies of indigenous body parts, collected in one time and place and reused in others, reveals the enduring colonial dimensions of scientific practice in our global age and demonstrates new openings for ethical action. Finally, we outline the articles in this special issue and their respective ‘mutations’ to postcolonial Science and Technology Studies, a field that, like genome science, is racked with ethical and temporal dilemmas of reckoning for the past in the present.

In the last few years, justice has emerged as a matter of concern for the contemporary constitution of technoscience. Increasingly, both practicing scientists and engineers and scholars of science and technology cite justice as an organizing theme of their work. In this essay, I consider why “science and justice” might be arising now. I then ask after the opportunities, but also the dangers, of this formation. By way of example, I explore the openings and exclusions created by the recent conjugation of science and justice in the field of personal genomics. Finally, I conclude with reflections on what other forms “science and justice” might take, and what might be gained or lost in fostering them.

During the nineteenth century, the American School of Anthropology enfolded Native peoples into their histories, claiming knowledge about and artifacts of these cultures as their rightful inheritance and property. Drawing both on the Genographic Project and the recent struggles between Arizona State University and the Havasupai Tribe over the use of Havasupai DNA, in this essay we describe how similar enfoldments continue today—despite most contemporary human scientists’ explicit rejection of hierarchical ideas of race. We seek to bring greater clarity and visibility to these constitutive links between whiteness, property, and the human sciences in order that the fields of biological anthropology and population genetics might work to move toward their stated commitments to antiracism (a goal, we argue, that the fields’ antiracialism impedes). Specifically, we reflect on how these links can inform extralegal strategies to address tensions between U.S. and other indigenous peoples and genome scientists and ...

The opening decade of this millennium witnessed genome scientists, policy makers, critical race theorists and world leaders standing together to pronounce the anti-racist democratic potential of human genomics. Understanding and assessing this rise of ‘anti-racist, democratic genomics’ requires distinguishing between two problems of power and science: the first characterized by what Michel Foucault labeled states of domination; the second by what he described as relations of power. When states of domination exist, as in the case of Nazi science, liberal efforts to extend new powers of participation and autonomy to research subjects may play important roles in redressing power imbalances between researchers and their subjects. However, when distinctions between scientist and research subject blur, as in the case of much human genomics, efforts to extend liberal rights to subjects of genomic studies—or genomic liberalism—may produce novel problems, including: (1) human genome scientists' loss of capacity to...

I want to commend the organizers of the Chacmool Conference panel. All too often attempts to discuss the broader social and cultural dimensions of genetic studies of ancient human migrations devolve into simplistic celebrations or condemnations. It is heartening to find here an example of a conference session that managed to avoid these dangerous poles, and to grapple instead with the hard task of discerning the issues raised and not raised by genomic studies of human migrations and history. I would like to devote my commentary to exploring what might be learned from the discussions at Chacmool.

Following the stringent critiques of organizers of the Human Genome Diversity Project for excluding people from the initiative's early planning, subsequent administrators of high-profile efforts to study human genetic variation, such as the International HapMap Project, have made great efforts to stress the importance of including the people who are to be the objects of study in research design and regulation. Such efforts to ‘democratize’ genomics would appear to represent a positive development. However, in practice they have satisfied few as they fail to recognize the most basic lesson of the Human Genome Diversity Project debates: genomics raises questions not just about the inclusion of people, but about their very constitution. Positing concrete, stable subjects in society, current efforts to ‘democratize’ genomics fail to recognize that entangled in the fundamental questions about nature posed by this emergent form of technoscience are fundamental questions about the order and constitution of societies. The creation of sustainable and desirable forms of governance require us to come to terms with challenges posed to liberal democratic practices and values, such as inclusion, in an age defined partially by this mutual dis/ordering of nature and society.

jenny reardon is Assistant Research Professor of Women's Studies and Scholar in Genome Sciences and Policy at Duke University. In the academic year 2004-2005 she will be a Scholar in Residence at the Pembroke Center for Teaching and Research on Women at Brown University. Her book Race to the Finish: Identity and Governance in an Age of Genomics is forthcoming with Princeton University Press in December of 2004.

Since its inception in 1991, the design of the proposed Human Genome Diversity Project has shifted several times. However, one unchanging and central Project goal is to collect blood and other human tissue samples from `genetically distinct' indigenous groups around the globe. This goal has proved highly controversial, and the Diversity Project has thus far failed to move beyond the planning stage. In this paper I argue that the reason for the Project's inconclusive and open-ended character is that project organizers are attempting to stabilize and control a highly contested terrain structured by emotionally and politically charged discourses. These discourses inextricably entangle scientific and social issues - including North/South relations, colonization, intellectual property rights and the origins of human diversity. To move forward, as the paper demonstrates, project organizers would have to negotiate these entanglements, and `coproduce' a natural and social order that could accommodate their project. The paper explains why this process of coproduction proved to be so labour-intensive in the case of the Diversity Project, and why the Project's main responses to its critics to date have failed to provide the tools needed to do this work.

Personal-genome tests are blurring the boundary between experts and lay people. Barbara Prainsack, Jenny Reardon and a team of international collaborators urge regulators to rethink outdated models of regulation.

Commercially available tests of genetic ancestry have significant scientific limitations, but are serious matters for many test-takers.