Race to the Finish

Identity and Governance in an Age of Genomics

Jenny Reardon

• Publisher: Princeton University Press
• Year: 2009
• Print ISBN:
  9780691118574
  9780691118567
• eBook ISBN:
  9781400826407
• Topic: Biological Sciences
• Subtopic: Genetics & Genomics
• Index: Biological Sciences

In the summer of 1991, population geneticists and evolutionary biologists proposed to archive human genetic diversity by collecting the genomes of "isolated indigenous populations." Their initiative, which became known as the Human Genome Diversity Project, generated early enthusiasm from those who believed it would enable huge advances in our understanding of human evolution. However, vocal criticism soon emerged. Physical anthropologists accused Project organizers of reimporting racist categories into science. Indigenous-rights leaders saw a "Vampire Project" that sought the blood of indigenous people but not their well-being. More than a decade later, the effort is barely off the ground.


How did an initiative whose leaders included some of biology's most respected, socially conscious scientists become so stigmatized? How did these model citizen-scientists come to be viewed as potential racists, even vampires?


This book argues that the long abeyance of the Diversity Project points to larger, fundamental questions about how to understand knowledge, democracy, and racism in an age when expert claims about genomes increasingly shape the possibilities for being human. Jenny Reardon demonstrates that far from being innocent tools for fighting racism, scientific ideas and practices embed consequential social and political decisions about who can define race, racism, and democracy, and for what ends. She calls for the adoption of novel conceptual tools that do not oppose science and power, truth and racist ideologies, but rather draw into focus their mutual constitution.

Chapter 1

Introduction

By all accounts, no one expected it.

In the summer of 1991, leading population geneticists and evolutionary biologists from the United States proposed a project to sample and archive the world's human genetic diversity (Cavalli-Sforza et al., 1991).¹The proposed survey, they argued, promised "enormous leaps" in our understanding of "who we are as a species and how we came to be" (ibid., 491; Human Genome Diversity Project 1992a,1). To realize these promised advances in knowledge, proponents urged the scientific community to act swiftly. Social changes that facilitated the mixing of populations, they warned, threatened the identity of groups of greatest importance for understanding human evolutionary history-"isolated indigenous populations" (Cavalli-Sforza et al., 1991). To unravel the mysteries of human origins and migrations, these valuable gene pools would need to be sampled before they "vanished" (ibid.). The resulting time pressure, and the tens of millions of dollars it would take to conduct the survey, posed substantial challenges. Proponents recognized these constraints. It crossed nobody's mind that the project might one day be accused of inventing a new form of colonialism.

Initially, the proposal captured the imaginations of leaders in the human genomics community worldwide. The Human Genome Organization (HUGO), an international body responsible for coordinating activities within the Human Genome Project, formed a committee to investigate how to carry the initiative forward. The National Science Foundation (NSF), the National Human Genome Research Center (NHGRC), the National Institute of General Medical Sciences (NIGMS) and the Department of Energy (DOE) provided funds for three planning workshops. With this support in place, by the end of 1992 organizers had every reason to believe that what had become known as the Human Genome Diversity Project would begin operation by 1994.²

Their expectations, however, were disappointed. Far from winning support, in a series of events that many organizers have found inexplicable and even bizarre, the Diversity Project became the target of vociferous outrage and opposition shortly after the initiative's second planning workshop in October 1992.³ In May 1993 some physical anthropologists accused the initiative of using twenty-first-century technology to propagate the concepts of nineteenth-century racist biology (Lewin 1993). In June of that year, indigenous leaders from fourteen United Nations member states drafted a declaration calling for an immediate halt to the initiative. In July the Third World Network charged the Project with violating the human rights of indigenous peoples by turning them into objects of scientific research and "material for patenting" (Native-L 1993a). And in December the World Congress of Indigenous Peoples dubbed the initiative the "Vampire Project," a project more interested in collecting the blood of indigenous peoples than in their well-being (Indigenous Peoples Council on Biocolonialism 1998). By 1998 over a hundred groups advocating for the rights of tribes in the United States and indigenous groups worldwide had signed declarations condemning the Project (ibid.).

In the aftermath of these events, the puzzle for many scientists, ethicists, and government officials who seek to study human genetic differences is how this seemingly beneficent and well-intentioned initiative came to be so stigmatized.⁴The Project's leaders included some of biology's most respected, socially conscious scientists-scientists who had devoted significant energy over many decades to fighting racism and promoting human rights. Mary-Claire King, a medical and population geneticist, used genetic techniques to assist the Abuelas de Plaza de Mayo (Grandmothers of the May Plaza) in their effort to identify grandchildren kidnapped during Argentina's Dirty War.⁵ Luca Cavalli-Sforza, a human population geneticist, debated William Shockley, a Stanford physicist who called for the sterilization of women from "inferior races," during the race and IQ debates of the 1970s. Robert Cook Deegan, a physician and geneticist, worked for Physicians for Human Rights. These were not self-seeking researchers who sought to extract the blood of indigenous peoples for the sake of financial and political gain. They were scientists who sincerely hoped to create a project that would deepen the stores of human knowledge while fighting racism and countering Eurocentrism (Bowcock and Cavalli-Sforza 1991, Cavalli-Sforza 1994). It would be historically inaccurate, and morally insensitive, to understand the Diversity Project as an extension of older racist practices by labeling the initiative the product of white scientists wielding the power of science to objectify and exploit marginalized groups. The story of the Project is more complicated. It raises questions that cannot be resolved so easily.

I argue in this book that, far from being a straightforward story about the powerful exploiting the powerless, the Diversity Project debates raise fundamental questions about how to understand the very constitution of power and its relationship to science in an age when scientific claims about the human-in particular, its genomes-increasingly influence decisions about how humans should regulate and conduct their lives. Dominant analytic frameworks in the social sciences assume power distorts science and the work of scientists-leading them, for example, to produce racist ideologies. Science, in reverse, is the antidote to power; it produces truth that counters ideologies. In the case of the Diversity Project, however, this understanding of the oppositions between science and power, or truth and ideology, proved inadequate. Claims that the Project would lead to the end of racism by producing reliable scientific knowledge were just as unconvincing as some of the critics' claims that the Project would propagate racism and colonialism by exploiting the genes of indigenous peoples.

In order to understand the Diversity Project debates, a different understanding of science and its relation to power is needed. In place of a framework that casts science and power as already-formed entities that oppose each other, the simultaneous emergence of novel forms of knowing, and of governing the human, evident in this initiative, challenges us to find conceptual tools that will draw into view the ways in which knowledge and power form together. The Diversity Project raised fundamental questions about how to characterize human genetic diversity for the purpose of understanding human evolution and history. Yet, these questions about how to order and classify an aspect of nature to advance human understanding proved inseparable from an allied set of questions about how to organize human differences for the purposes of creating credible and legitimate systems of governance. The conceptions of science and power upon which many Project organizers relied did not bring these entanglements into sharp focus. Thus, organizers were continually caught off guard when questions about power-for example, questions about how to make authoritative claims about human diversity-turned out to be embedded in what they viewed as merely a scientific, humanistic, and anti-racist endeavor to understand the history and evolution of the human species.

Although the Diversity Project has ceased to move forward in its original form, the contentious questions it raised endure in their importance. Human genetic-variation research now tops the agendas of both private and public research institutions. In October 2002, the National HumanGenome Research Institute (NHGRI) announced the launching of a $100 million public-private effort to map human genetic variation, the International Haplotype Map (HapMap) Project (http://genome.gov/10005336). Countless other initiatives speckle the life sciences landscape as researchers interested not just in human evolution, but also in medicine and public health, seek to understand the human-its diseases, health, and potential-using the new powerful tools of the genomic revolution. Far from transcending the problems raised by the Diversity Project, these current efforts have only generated similar troubling questions (Couzin 2002).⁶ By returning to the Diversity Project debates, this book seeks to bring into view and clarify the underlying contestations over the nature of knowledge, power, and expertise that were at stake in this effort to catalog human genetic diversity, and that continue to create discomfort today.

Race, Expertise, and Power

At the center of these contestations is a broader struggle over the meaning of race in science, medicine, and the modern state. As the last millennium ended, efforts to use racial categories in biomedical research and public health generated fundamental questions. Is race an obsolete concept that should be left behind by the operations of liberal democratic societies and scientific and medical research, insofar as this is possible, as some cultural and scientific critics have argued (Appiah 1990, Freeman 1998, Gilroy 2000, Wilson et al, 2001)? Or should race be understood as a positive category that designates both cultural and national belonging, and contributes to public health efforts to reduce the burden of disease (Du Bois 1961 [1903], Cruse 1968, NIH 1994, Risch 2002)? Can past misconduct and inequities in government, including the provision of health services, be overcome by transcending the concept of race, or, conversely, must this concept be actively employed to overcome those racial structures that continue to oppress?

Diversity Project organizers found themselves in a peculiarly ambiguous and paradoxical position with respect to these questions. On the one hand, they claimed that the Diversity Project would help "combat the scourge of racism" by demonstrating that "there is no absolute 'purity'" and no "documented biological superiority of any race, however defined" (Cavalli-Sforza 1994, 1, 10). Rather than promote racial division, Project organizers promised the initiative would demonstrate "humanity's diversity and its deep and underlying unity" (Cavalli-Sforza, 1994, 1). As one step toward these goals, one of the Project's main scientific leaders, the human population geneticist Luca Cavalli-Sforza, advocated abandoningthe category of 'race' in favor of the categories 'group' and 'population' (Cavalli-Sforza 1994, 11).*

Yet, as we will see, at the same time that proposers of the Project disavowed the use of the category of race, they found themselves being accused by many of reinscribing old racial categories, and even of being racist. Some physical anthropologists argued that the Project employed categories that carried forward notions of racial purity (Lewin 1993, Marks 1995). Numerous indigenous rights groups charged Diversity Project organizers with continuing a long tradition of the West's use of racial science to justify its exploitation of the powerless (Mead 1996, Indigenous Peoples Council on Biocolonialism 1998). In an ironic turn, in the face of these critiques, some Project organizers began to explicitly employ racial categories. Representing what appeared to be a turnaround from the earlier disavowal of race, some leaders of the initiative now argued that the Project would include the genomes of African Americans and other "major ethnic groups," and in this way would serve as an "affirmative action" response to the Human Genome Project (Weiss 1993).

As the chapters that follow illustrate, underlying these debates about race were fundamental questions about how knowledge of the human should be produced in a genomic age, and who possesses the expertise needed to participate in this pursuit. How could human beings come to know their own species-its history and evolution-in an age when novel technologies enabled a purportedly molecular vision of human existence? What role, if any, could studies of human genetic differences play? How should such studies be designed? Which of the human sciences, if any, could provide the organizing concepts and methods? Human population genetics? Physical anthropology? Cultural anthropology? All of them?

These questions about the constitution of the right kind of knowledge were connected to questions about the nature of power. As Michel Fou-cault demonstrated through his studies of madness, the clinic, and the prison, the human sciences play central roles in constituting techniques and procedures for directing human behavior in the modern epoch (Fou-cault 1973, 1975, 1976). This modern age witnessed the entanglement of rules that govern what can count as knowledge with rules that determine which human lives can be lived. The result was the emergence of a new kind of power, what Foucault named biopower (ibid., 1976).

This close relationship between the rules that structure power and knowledge (a relationship Foucault highlighted through use of the contraction power-knowledge) was tellingly revealed in the attempts to plan the Diversity Project. Not surprisingly, a scientific endeavor that promised "enormous leaps in our grasps of human origins, evolution, prehistory, and potential" provoked questions about the role the initiative might play in producing human subjects who could be governed in novel, and potentially oppressive, ways (Cavalli-Sforza et al., 1991, 491).Would Diversity Project organizers' seemingly benevolent efforts to include groups in the design and the regulation of the sampling initiative facilitate their inclusion in an ethical manner, or would these efforts only threaten the sovereignty rights of tribes in the United States and marginalize other minority groups? Would the sampling and potential patenting of indigenous DNA bring benefits to indigenous groups through royalty sharing and medical advances, or would it merely enable their further objectification and exploitation? And who, if anyone, could speak for tribes and major ethnic groups in the United States, and indigenous groups across the globe, on these novel issues raised by a global survey of human genetic diversity? As these questions would make clear, at stake in the struggles over the Diversity Project were not only the validation of a research project, but also the resolution of some of the central social debates in an age defined by the emergence of genomics, globalization, deepening tensions between the (global) North and South, and a renewed struggle over the status and definition of race in the United States.

Co-Production: A Framework for Studying Emergence

To address these connections more directly, this book tells the story of the Project from within an analytic framework in science and technology studies that seeks to understand how scientific knowledge and social order are produced simultaneously-or, in a word, co-produced (Jasanoff 2004).⁷By linking critical studies of scientific knowledge and analyses of political institutions and social structures, I along with other scholars working within this analytic framework am attempting to clarify the ways in which bringing technoscientific phenomena or objects into being (objects, for instance, like 'human genetic diversity') require the simultaneous production of scientific ideas and practices and other social practices-such as norms of ethical research and credible systems of governance-that support them.

The resulting fine-grained portrayals of the mutual constitution of natural and political order have done much to undo grand narratives that have either celebrated science as an ideal polity (Merton 1973), or condemnedit for reinscribing hegemonic and oppressive political orders (Habermas 1975). In the place of totalizing broad-stroked accounts, we have gained richer, more useful pictures of science and technology (S&T) that neither simply sanctify nor condemn, but rather bring to light the locally contingent and often ambivalent roles the creation of S&T plays in the ongoing human struggle to produce societal arrangements in which humane and meaningful lives can be lived.

On a terrain prone to polarization, the co-production idiom is a particularly valuable resource for countering analyses that too easily celebrate enlightened, objective studies of human genetic diversity, or too readily dismiss them as ideological and racist. It provides a framework that enables us to see that all efforts to organize such studies necessarily entail the production of both c...

Table of contents

• Table of Contents
• Acknowledgments
• Chapter 1 Introduction
• Chapter 2 Post-World War II Expert Discourses on Race
• Chapter 3 In the Legacy of Darwin
• Chapter 4 Diversity Meets Anthropology
• Chapter 5 Group Consent and the Informed, Volitional Subject
• Chapter 6 Discourses of Participation
• Chapter 7 Conclusion
• Appendix A: Methodological Appendix
• Appendix B: Code for Interviews
• Appendix C: Human Genome Diversity Project Time Line
• Notes
• Bibliography