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JOANNA RADIN

Yale University
EMMA KOWAL
Deakin University

Indigenous blood and ethical regimes in


the United States and Australia since
the 1960s
A B S T R A C T uman populations characterized as geographically isolated,

H
Blood samples collected from members of close to nature, and—most recently—indigenous have long at-
indigenous communities in the mid-20th century by tracted interest from scientists,1 who have been critiqued for
scientists interested in human variation remain seeing them as portals to the past (e.g., Fabian 1983; Kuklick
frozen today in institutional repositories around the 1991; Reardon and TallBear 2012; Stocking 1987; Wolf 1982).2
world. This article focuses on two such This perspective animated the earliest anthropological efforts to document
collections—one established and maintained in the and salvage the social practices, cultural artifacts, and languages of such
United States and the other in Australia. Through groups (e.g., Gruber 1970; Trouillot 1991).
historical and ethnographic analysis, we show how In a mid-20th-century iteration of this interest, peoples who now iden-
scientific knowledge about the human species and tify as indigenous came to be valued by a range of scientists who sought to
ethical knowledge about human experimentation are salvage their blood. Assumptions about the isolation of these populations
coproduced differently in each national context over allowed them to be cast as natural laboratories for the study of unique so-
time. Through a series of vignettes, we trace the matic signatures and genetic mutations thought to have been accumulated
attempts of scientists and indigenous people to through millennia of living in a state of adaptive equilibrium. With new re-
assemble and reassemble blood samples, ethical search priorities and forms of molecular analysis, this blood became a pre-
regimes, human biological knowledge, and cious and polyvalent biomedical resource (Bangham and de Chadarevian
personhood. In including ourselves—a U.S. 2014; Radin 2013; Reardon 2005; Santos et al. 2014).
historian of science and an Australian Concern about the homogenizing forces of an encroaching modernity
anthropologist—in the narrative, we show how allowed this project of salvage to be cast as an especially urgent one,
humanistic and social scientific analysis contributes essential to generating knowledge relevant to the future of the species
to ongoing efforts to maintain indigenous samples. more broadly. Anthropologists, human geneticists, and epidemiologists
[indigenous, biospecimens, science, genomics, anticipated that such blood, if properly preserved at low temperature,
postcolonial, ethics, cryopreservation] could reveal manifold facets of human evolution and variation—even
after the societies from whom they were collected had disintegrated—and
would continue to do so as “yet unknown” future technologies emerged
(Radin 2013, 2014).3 Through the eyes of these scientists, indigenous
populations were understood to be both fundamental and exceptional:
It was their apparent lack of social and cultural change that made them
essentially and uniquely biologically human.
A crucial episode in the mid-20th-century effort to freeze a precious
resource before it was too late was the International Biological Program
(IBP), a large-scale effort to take stock of the biosphere that ran from
1964 to 1974. Its Human Adaptability arm (the only one of seven program

AMERICAN ETHNOLOGIST, Vol. 42, No. 4, pp. 749–765, ISSN 0094-0496, online
ISSN 1548-1425. 
C 2015 by the American Anthropological Association. All rights reserved.
DOI: 10.1111/amet.12168
American Ethnologist  Volume 42 Number 4 November 2015

areas dedicated to the study of humans) represented one of a trained physician who studies the ethics and politics of
the first coordinated, worldwide efforts to salvage and pre- human genome research in Indigenous Australia. This re-
serve bodily substance from members of supposedly disap- search has pulled her into the past, where she has become
pearing populations to aid in the present and future study involved with negotiating the management of a contested
of human relations to the environment (Radin 2012; Santos set of frozen blood samples collected in the 1960s by Robert
2002). Histories of the IBP have tended to focus on its fail- (Bob) Kirk, a British–Australian geneticist whose research
ure to achieve its broad ecological goals (Aronova et al. 2010; focused on human biological variation. Kirk led Australia’s
Coleman 2010; Kwa 1987). However, when we examine the contribution to the Human Adaptability arm of the IBP.
legacies of its human-oriented endeavors, it becomes ev- Joanna Radin is a historian of science, who began her
ident that the IBP was hugely influential in shaping the research with an interest in collections of frozen blood
course of research in human biology, biological anthropol- from human communities in the Pacific and Amazon
ogy, and human population genetics in ways that persist in created under the auspices of the IBP. Many of these col-
the present (Collins and Weiner 1977; Little 1982; Roberts lections endure, and the project of tracking their vital lega-
1993; Ulijaszek and Huss-Ashmore 1997). cies has oriented her attention toward their management
The materials on which we focus here are part of the in the present. Among others, she has examined the col-
afterlife of the Human Adaptability arm of the IBP: two col- lection practices of Nobel Laureate D. Carleton Gajdusek,
lections of frozen blood samples that endure into the 21st a physician and biomedical researcher who accumulated
century, one in Australia and the other in the United States. hundreds of thousands of samples through his own ex-
These stockpiles of human biological variation, made pos- peditions and exchanges with other scientists, including
sible through mid-20th-century technologies of preserva- Kirk.4
tion and transportation, are truly global assemblages. Our We were brought together through our own inter-
approach, following anthropologists Stephen J. Collier and national academic networks. We first met at the 2009
Aihwa Ong, is to view freezers filled with blood samples American Anthropological Association annual meeting
as phenomena that are articulated in specific situations at a presidential session on “Consuming Genomics” that
yet are “abstractable, mobile, and dynamic.” As such, they Joanna co-organized with Deborah Bolnick, a biological
are “domains in which the forms and values of individ- anthropologist and science studies scholar. Over dinner
ual and collective existence are problematized in the sense in Philadelphia, we realized the extent of our overlapping
that they are subject to technological, political, and ethical and congruent interests. This article has emerged from our
reflection and intervention” (Collier and Ong 2005:4). The attempts since then to assemble fragments of historical
subjects of this article—blood sample collections but also data relevant both to the relationship between Gajdusek
ethical frameworks and even scientists themselves—are and Kirk and to the enduring collections of fragmented
“assemblages.” In this sense, they are the products of un- body parts the two scientists assembled in the mid-20th
even and shifting technological, political, and ethical beliefs century. Although the two collections are the product of
and practices. These assemblages are ideal substrates for a the same epistemologies and technical practices, they are
science studies analysis of how biological knowledge about embedded in different ethical regimes and have met very
the human species and ethical knowledge of human ex- different fates in the present. Gajdusek’s collection, housed
perimentation have shifted—or as we prefer, “mutated”— in the United States, has received substantial funding to
over time. Within these mutating assemblages of the human be reassembled for genomic analysis; Kirk’s collection in
species and human subjects, we are particularly interested Australia has, until recently, languished under institutional
in continuities and changes in the roles of samples, persons, indifference due to prohibitive ethical barriers.
and communities marked as “indigenous”—and the differ- In the balance of this article, we tell the tale of these
ent circumstances in which that label becomes significant. two collections and consider their implications for the pro-
We draw on the conceptual term assemblage as a noun but duction of knowledge about the human as a species and
are also attentive to the verb form, tracing how different ac- about humans as experimental subjects. We first outline the
tors, ourselves included, perform the work of assemblage bureaucratic, ethical, and moral contexts of the two collec-
and reassemblage. tions, describe the combination of concepts and theoretical
This article, then, is an intellectual experiment across approaches we employ, and spell out the stakes of our anal-
multiple axes of space and time. It brings us, an Australian ysis. We then present a series of historical and ethnographic
anthropologist and a U.S. historian, into dialogue about vignettes drawn from our engagement with the two collec-
the divergent fates of our research subjects—scientists tions. Finally, we analyze the different kinds of reassem-
and members of indigenous communities—and research blage work currently occurring in the Australian and U.S.
objects—freezers of old, cold blood and the ethical regimes collections, linking it with broader discussions of the hu-
that govern their use. Emma Kowal is an anthropologist and man as subject and object of research.

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Indigenous blood and ethical regimes  American Ethnologist

Ethical regimes and moral economies the United States or in Australia. It is our comparative
analysis that has highlighted this circumstance and may
Our use of the term ethical regimes does not denote regimes have consequences for the endurance of such materials in
that are normatively “ethical” and that might be opposed U.S. freezers.
to “unethical” regimes. Rather, the term allows us to draw At this point, a brief review of the dominant ethical
attention to regimes of ethics, the “specific biotechnol- research regimes in the United States and Australia is nec-
ogy policies and styles” of bureaucratic structures and essary. The development of such institutionalized regimes
systems developed largely within state and academic in virtually all industrialized countries can be traced to
research institutions to facilitate scientific and biomedical post–World War II concerns about the abuses of Nazi sci-
research (Ong and Chen 2010:4; see also Jasanoff 2005). ence, expressed most famously in the “Nuremberg Code”
These structures include ethical review bodies, informed (Nuremberg Military Tribunals 1946–49:181–182) and the
consent procedures, and committees and panels formed Declaration of Helsinki (World Medical Association 1964),
within professional associations, all of which have become along with concern about unethical domestic research, the
subjects of historical and ethnographic attention (Epstein most famous U.S. case being the Tuskegee Syphilis Study
2007; Hamilton 2009; Hoeyer and Hogle 2014; Petryna et al. (United States Department of Health and Human Services
2006; Stark 2011). 1979; see also Beecher 1966). Institutional review boards
This recent research has demonstrated that such struc- (IRBs) in the United States and human research ethics
tures, while appearing to transcend local circumstance committees (HRECs) in Australia were developed to review
and deploy “universal” ethical principles of beneficence, research applications and ensure that proposed research
nonmaleficence, autonomy, and justice, are in all cases designs and methods conformed to prevailing ethical stan-
conditioned by multiple and varying moral economies. In dards. Since the 1980s, technologies such as information
invoking the phrase “moral economies,” we direct atten- sheets, consent forms, and procedures for withdrawal
tion to the intellectual as well as the political stakes of from research have emerged, producing more complex
our project (Fassin 2011). For several decades, historians and bureaucratized ethical regimes (as summarized most
of science have used the phrase (often credited to labor recently in Hoeyer and Hogle 2014).
historian E. P. Thompson) as a means of exploring the U.S. and Australian ethical regimes are generally sim-
“affect-saturated values” that create the “balanced system ilar, united above all by the symbolic ideal of donor con-
of forces” that allow scientific communities to operate sent as articulated through international organizations like
(Daston 1995).5 UNESCO (Hoeyer 2008). However, the emergence of histor-
In other words, the bureaucratic structures of an eth- ically specific moral economies in the two countries has led
ical regime only make sense and produce “ethical” action to distinctively different ethical regimes governing research
within the moral economies in which they are deployed. in groups marked as “indigenous.”
Kirk’s and Gajdusek’s collections are embedded within very In Australia, a comprehensive Indigenous critique of
different moral economies in at least two ways. First, Kirk’s Western research has developed since the 1980s, in paral-
collection is recognized as being composed of indigenous lel with global critiques (Smith 2012) that consider research
biospecimens, while Gajdusek’s is not, or to put it more to be an extension of colonization and thus the cause of
precisely, it has not yet been explicitly identified in this ill health and harm rather than its alleviation (Johnston
way (although it does contain samples from Alaskan Native 1991; Paul and Atkinson 1999; Royal Australasian College
communities). But even if Gajdusek’s collection were so of Physicians 2003). Such critiques tend to converge on a
identified, it is unclear what the immediate or long-term vision of research practices controlled by Indigenous peo-
consequences would be. The definition of “indigenous ple and modified to suit their aims, priorities, and methods
biospecimens” and the reach of bureaucratic mechanisms (Henry et al. 2002). The strong notion of pan-indigeneity
to regulate them differ significantly between Australia and in Australia—a sense of a national Indigenous polity—
the United States, as we discuss below. and the relatively greater attention given to indigenous is-
The effect of these differing moral economies is illus- sues by Australian governments (in comparison with U.S.
trated by the fact that aliquots (portions) of samples of the governments6 ) have been influential in translating these In-
same individuals very likely exist in the Kirk and Gajdusek digenous critiques into a nationwide Indigenous-specific
collections. In other words, we are not just dealing with two ethical regime.
similar collections (similar in that they maintain materials Crucial elements of this regime are the guidelines
from groups who would today identify as indigenous) for Indigenous health research released by the Australian
that are managed differently. More than that, we see how National Health and Medical Research Council (NHMRC;
frozen samples collected from the same person stand to 1991, 2003). The guidelines address issues of consultation
assume different ethical valences and even different modes and community involvement in research as well as own-
of personhood depending on whether they are stored in ership and publication of data. These national guidelines

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are used by all Australian HRECs to make decisions about Our efforts to highlight those differences may also,
Indigenous health research projects. In addition, four of the in turn, lead to collections assembled under the ethical
eight Australian states and territories have specific HRECs regimes of the 1960s and 1970s and currently maintained
with majority or solely Indigenous membership. Some uni- in different nations being reassembled in the 21st cen-
versity HRECs require approval from an Indigenous HREC, tury. It may also lead individual specimens—such as those
and all require a letter of approval from a community from Alaska Natives or Australians maintained in collec-
for research to proceed. As we explore below, research on tions in the United States—to become the subject of claims
old biospecimens collected long before this ethical regime by members of indigenous groups, threatening some col-
emerged has proven a difficult issue in Australia, but the lections with disassemblage (Mello and Wolf 2010).
emerging consensus requires researchers using so-called
indigenous biospecimens to seek consent from the donors The coproduction of mutating ethical regimes
(or their descendants) and their communities.
In the United States, the ethical regime for research in In the introduction to a recent special issue of Social
American Indian and Alaskan Native communities shares Studies of Science focused on indigenous body parts and
some similarities with Australia but also has some key postcolonial contexts, we argued for the need to attend
differences. Many Native American tribes have been far to the “unfolding and mutating vital legacies” of research
more successful than groups in Australia at asserting their materials “collected in one time and place and reused in
sovereignty rights and creating a sustainable economic others” (Kowal et al. 2013:465). For us, “mutation”—in its
base. Thus, while indigenous critiques of research similar invocation of the variously advantageous, deleterious, or
to those in Australia have also emerged in the United States neutral mechanisms of biological change—is also an idiom
since the 1980s (see, e.g., Indigenous Peoples Council for reckoning with the unique and unexpected outcomes of
on Biocolonialism 2000; Rural Advancement Foundation efforts to freeze bits of indigenous bodies for future uses.
International [RAFI] 1994), these are expressed bureau- The concept of mutation served to point to the tem-
cratically as tribal guidelines for research (and sometimes poral dimensions of “coproduction,” a concept developed
tribal moratoriums on research; see Navajo National Coun- within science and technology studies to describe how so-
cil 2002) rather than in a national regulatory approach. cial and technical domains of life are mutually produced
Some tribes and the Indian Health Service have developed (Jasanoff 2006).7 Science studies scholars who draw on co-
comprehensive guidelines and systems of ethical approval production frameworks assume that “successful” scientific
and oversight, while some tribes have none. Such locally advances are those that have succeeded in social and polit-
innovated ethical regimes generally do not reach outside ical realms as much as in technical ones.
the physical territory of the tribe (or Indian Health Service In our view, coproduction is a form of engaged sci-
facilities) to affect research conducted elsewhere (Sahota ence studies that allows for the diagnosis as well as the
2007). This combination of factors makes it less likely that rehabilitation of global assemblages. We were inspired by
the current custodians of Gajdusek’s collection, and others Jenny Reardon’s (2001, 2005) demonstration of the value
like it in the United States, would consider that they hold of a coproductive approach in interpreting the challenges
“indigenous” samples requiring special regulatory status that beset scientists involved the Human Genome Diversity
or that they would seek to consult with American Indian or Project (HGDP) of the early 1990s. The HGDP, a global stock-
Alaskan Native stakeholders on their management. taking project of indigenous genetic material, was a direct
The problem of boundaries also applies on a larger descendant of the biological salvage efforts of the IBP (San-
scale to the ethical regulation of samples outside their tos 2002). Reardon diagnosed the derailment of the HGDP
nation of origin. For example, as we mention above, if a as the result of a failure to coproduce social protections ap-
portion of a sample that is considered “indigenous” in propriate to the science in question. HGDP organizers had
Australia is stored in a freezer overseas, it falls outside the not considered that an emerging pan-indigenous rights
Australian ethical regime, effectively losing its “indigenous” movement, global concerns about biopiracy and gene
status. That different settler colonial nations, in this case, patenting, and broad concern about informed consent
the United States and Australia, have similar ethical regimes would arouse suspicion and mistrust among those they
for managing human biospecimens but different practices sought to enroll in their research. For Reardon, coproduc-
for those now marked as “indigenous” points to the un- tion was both an analytic strategy as well as therapeutic
even legacies of mid-20th-century projects to consolidate practice for achieving a more socially aware and justice-
knowledge about the human species. The differences bring oriented genomic science. Her book, Race to the Finish
into sharp relief the historical contingencies that constitute (2005) was meant to be both a critique and a blueprint.
technoscience as it unfolds in contexts that are never fully In the decades since the HGDP was proposed, ad-
postcolonial (Abraham 2006; Anderson 2009; Comaroff and vances in genomics have made indigenous biomaterials
Comaroff 2003; Hecht 2011; Seth 2009; Simpson 2007). more desirable and more politicized than ever. The ethical

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innovations that came out of the Euro-American meeting Our comparative analysis of these collections has three
rooms of the last decade of the 20th century—such as group aims. First, we seek to illustrate the merits of a compar-
consent and statements condemning racism—are proving ative approach to studying the mutating relationship be-
inadequate to the task of determining the appropriate use tween social and technical orders in two national contexts.
of samples stored in freezers since the 1960s. This situation The following section narrates our engagement with these
has arisen, in part, because morality and ethics, as Didier two collections through a series of vignettes that track back-
Fassin has argued, “are not a given, but the result of the ac- ward and forward through time and space and illustrate
tion of men and women to defend certain values against the overlapping and competing attempts of scientists, so-
others” (2011:484). With Reardon, we concluded that copro- cial scientists, and indigenous people to consolidate the
duction must be regarded as a process that is “ongoing and human species and the indigenous subject. In assembling
nonlinear, raising new questions about what it means to live fragments in this way, we aim to re-create the experience of
and die, to seek justice and experience harm, and to create temporal, ethical, and political disorientation that can oc-
and resist group identities in the different spatial and tem- cur when preserved biospecimens fall out of sync with the
poral contexts in which body parts continue to be studied dominant ethical regime (or we could say, fail to coproduce
and collected anew” (Kowal et al. 2013:467). the dominant ethical regime), even as we outline patterns
A coproduction approach to the reuse of biospecimens and meanings that might be emerging from the disorder.
and the mutating ethical regimes that surround their Our second aim is to show what can be gleaned from
management directs our efforts toward tracking ongoing a reflexive analysis of the insights gained from our col-
realignments of social and technical orders.8 Both kinds laborative, interdisciplinary approach. In the final section
of work—social and technical—are required to maintain, of the article, we analyze the ethical, historical, and tech-
rehabilitate, and renew sample collections. In the case nical work that is currently being conducted on the Aus-
examined in this article—the material afterlives of two tralian collection to facilitate its future use for scientific
collections of blood created during the IBP and persisting study. This work of reassembling scientists, samples, and
today—the technical work of maintaining the value of personhood—work that has not been deemed necessary for
the samples has involved transferring old blood to new sustaining the U.S. collection—illustrates the differential la-
cryovials, recombining aliquots, entering data into sample bor required for samples to maintain their potential to pro-
management systems, and myriad quality assurance prac- duce knowledge over time.
tices. At the same time, the ethical viability of samples must It also illustrates the differing potential of sample col-
also be negotiated. Doing so has come to involve obtaining lections to influence broader ethical regimes and the social
institutional ethics approval, keeping within the bounds relations they produce. For example, Klaus Hoeyer (2005)
of accepted ethical practice (or working to change what is has argued that the practice of “biobanking” has generated
acceptable), and maintaining a scientific guardian for the a new form of actor in the medical assemblage: the rights-
samples. A failure of either scientific or social work places bearing tissue sample. By talking about samples as prox-
the samples in jeopardy, causing mutations that threaten ies for persons, freezers become potentiated with intense
to render them either subject to being returned, destroyed, expectations. Human relationships with donated samples
or impossible to discard (Kowal 2013). are reconfigured. We argue that this profound shift in the
The comparative story we tell here is of two responses making is influenced by “indigenous” samples, particularly
to fragmentation, two modes of coproduction, resulting in as they have been conceived within Australia. The contem-
local variations of global assemblages or communities of porary management of Kirk’s collection suggests that in-
fate (Ong and Chen 2011; Ong and Collier 2005). One as- digenous biospecimens have come to set the benchmark
semblage exists in the United States and incorporates (and for the ethical treatment of human subjects in ways that
perhaps intensifies) the epistemological practices that frag- may ultimately travel beyond Australia. The “special” con-
ment persons and knowledge-making subjects. Samples ventions developed for management of indigenous samples
there are being transformed into substrates for the genomic are increasingly evaluated as the standard for all human
future without addressing the fragmented social ties and samples.
subjectivities that were produced at the time of their ini- Comparison of the U.S. and Australian cases illustrates
tial assemblage. The assemblage in Australia tells a differ- the creative potential of mutating ethical regimes and failed
ent story. Its current fate is grounded in resistance to frag- attempts at coproduction. The successful coproduction of
mentation, in responding and contributing to postcolonial Gajdusek’s samples saw them mutate within the United
critiques of scientific exchange and knowledge production. States, where their use required IRB approval from both the
Within this ethical regime, only biospecimens that are rec- National Institutes of Health (NIH) and the research uni-
ognized as connected to (and, perhaps, belonging to) their versity where they are now maintained. It did not require
donors can produce knowledge, and only virtuous scientists specific approval from organizations such as the National
can speak the truth about indigenous bodies. Congress of American Indians, an advocacy group that

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has made policy recommendations about the appropriate In taking this approach, we do not mean to be obstruc-
use of biospecimens collected from communities who now tive, apologetic, or opaque. Our position aims to reflect
identify as indigenous (American Indian and Alaska Na- our intellectual stance, following key anthropological
tive Genetics Resource Center 2012), or from the specimen critiques that consider “ethics” an object of empirical study
donors or their descendants. (Brodwin 2000; Hoeyer 2005; Ong and Chen 2011; Petryna
In contrast, Kirk can be understood to have failed 2005). As scholars appointed through research universi-
to coproduce samples to fit an emerging ethical regime ties, we are unavoidably imbricated in the networks that
in Australia in which informed consent must be demon- brought the collections we study together and that now
strated for the use of all indigenous biospecimens. His sam- seek to retain or distribute them (Calvert 2013; Marcus
ples mutated to the point that they were no longer viable 1997). We are entangled in overlapping commitments to
substrates of science. The work of rehabilitating them— indigenous people, scientists, and colleagues who have
remedial work of coproduction, of realigning ethical and varied expectations and make varied demands on our
technical domains—has, to date, been more productive in methods, our arguments, and our politics. This precarious
the realm of ethics than in the production of biological position is inherent to knowledge making of all kinds. It is
knowledge. Reestablishing the collection as a scientific tool particularly visible in fields such as ours where “historical”
has mutated the ethical regimes of indigenous research figures can and do speak back and where ethnographic
and, potentially, broader notions of personhood. Gajdusek’s subjects are highly interested in the outcome of analysis.
samples, while today scientifically more productive than In this environment, some would find comfort in a nor-
Kirk’s, have not yet contributed to developing new protec- mative position, either explicitly bioethical or wrapped in
tions for vulnerable populations (Kowal and Radin 2015). critical theory of some kind. Readers searching here for such
Finally, throughout the article, we highlight stakes that an argument will be frustrated. There is no moral to this
are integral to all social inquiry but that become particularly story and no prescription for policy. There are no villains
visible at the intersection of indigeneity and science, his- or heroes among this story’s actors, including its narrators.
tory and anthropology. At this intersection, moral precarity There are only fragmented, shifting efforts to understand
is unavoidable. The scientists we study considered them- humans, over time.
selves to be virtuous and were so considered by their peers.
Fragment 1: Canberra, 2011
Only through mutations in social, technical, and geopo-
litical orders have their methods and outputs come to be Emma’s story begins in Canberra, Australia’s national capi-
viewed with suspicion. Studying them cannot teach us what tal, on a crisp autumn day in May 2011. She was at the Aus-
to avoid but shows us that shifting ethical terrain is un- tralian National University to visit a professor of genetics
avoidable. We conclude that to be ethical is to be open to the named Simon Easteal who had asked for her help with an
dynamisms inherent in producing knowledge in a changing old collection of Indigenous DNA samples. They had first
world. This means, among other things, resisting the com- spoken on the phone eight months earlier when Emma,
fort provided by the static approvals of IRBs or universaliz- who had heard about the existence of the collection from
ing moral principles derived from a Western philosophical geneticists working in Indigenous communities, decided to
tradition that seeks to transcend time and place. call Simon. Ten minutes into the conversation, he had asked
Like the contemporary scientists whose work interests for Emma’s help to determine what should be done with the
us, we too are subject to the ethical imperative to be virtu- collection. For over a decade after the collection was closed
ous, truth-seeking scholars: in our case, as an anthropol- to scientific study, he had sought advice on what do to with
ogist and a historian making knowledge about indigenous it, without success. Emma’s experience and contacts within
bodies and about the scientists that handled them. We are the world of Indigenous health research and her particular
equally implicated in the contemporary ethical norms we expertise in the social and ethical aspects of Indigenous ge-
study, a system geared toward questioning our motives for nomic research made her well situated to help him negoti-
analyzing the 20th-century history of biology and its after- ate unfamiliar ethical terrain.
math. To some, to analyze this area at all is to be complicit in Approaching the striking frontage of the John Curtin
the relations of power that made past biocollecting possible. School of Medical Research, where she was to meet Si-
If we must study this issue, such an interlocutor might say, mon, Emma was greeted by an imposing façade of glass
we should, at a bare minimum, emphatically condemn the and jagged edges, Black Mountain rising behind it. The
scientist collectors and their efforts. In response, we would new structure backed onto and concealed the original 1960s
argue that demonizing these scientists and their histori- building that was being progressively demolished. Simon
cal projects of collecting may lead to missed opportunities met her in the foyer, and she followed him through the secu-
to better characterize past and present attempts to under- rity entrance, through open, light spaces with walls of solid-
stand human nature and human difference, including at- color blocks, and into one of the few glass-walled offices
tempts that are currently considered ethical.9 around the edges of the open-plan floor.

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to know what had happened to all of the blood samples,


whether any still survived. She was interested to learn that
some of them were stored in freezers at Binghamton. This is
what led her to contact Ralph.
She walked across the campus, an array of concrete
buildings nestled on a hill overlooking the Susquehanna
River, to a low-slung hall known as “Science 3,” where she
was to meet Ralph. There, she learned about his archive,
a series of freezers that he had brought north to Bingham-
ton from his former post at the NIH in Bethesda, Maryland.
Binghamton was first established in 1946 as the two-year
Triple Cities College to serve World War II veterans seek-
ing degrees under the GI Bill. The region was home to IBM’s
first manufacturing plant, and the college was able to sat-
isfy a demand for semiskilled technical laborers as the com-
puter industry rapidly expanded following the war. In 1950,
Triple Cities was incorporated into the State University of
New York system as Harpur College. In 1965, it was reorga-
nized as the State University of New York at Binghamton.
Though it is recognized as the crown jewel in the New York
State university system, it does not have a medical school.
Figure 1. Box labeled “Master Workbooks Index, Vol. 1” on Professor Simon The recruitment of Ralph and his research materials were
Easteal’s desk at the John Curtin School of Medical Research, Australian part of an effort to prepare students to pursue postgradu-
National University, Canberra, May 30, 2011. Credit: Emma Kowal.
ate degrees that could lead to careers in biomedicine and
biotechnology.
On this first visit, Joanna received a tour of the serum
On entering, she noticed a wooden box in a pleas-
archive, which consisted of a suite of three rooms in
ing shade of teak, about 20 centimeters square (Figure 1),
the building’s basement. The first contained a filing cab-
placed on the desk. The label on the front read “Master
inet, two computers, and bound sets of field notes and
Workbooks Index, Vol. 1.” The box contained handwritten
“bleed lists”—identifying information of those who gave
index cards with separators from A to Z. Each card was in-
their blood—on a bookshelf. All of the historical informa-
scribed with a three-letter code at the top left-hand corner,
tion available pertaining to original collection of the frozen
each code referring to an Indigenous Australian commu-
blood was kept there. It was assembled in keeping with
nity or to some other group or nation. Written below each
standards outlined in technical reports produced by the
code were the associated range of sample numbers, dates of
WHO and reproduced and disseminated in official IBP pub-
collection, and corresponding analysis results books. In all,
lications (Radin 2013).
over a hundred thousand samples were indexed in this box,
The second room was a wet lab where technicians,
including some seven thousand samples collected from the
many of whom were pursuing master of science degrees in
particular Indigenous Australian communities that Emma
biomedical anthropology, handle old blood. In the wet lab,
was there to discuss with Simon. She recalls feeling over-
a wipe-off board listed more than a dozen collections cur-
whelmed as she leafed though the box. Every card, ev-
rently being archived, including samples from an Indige-
ery corner of the world, each three-letter code condensed
nous community in Northern Australia. The third room was
decades of colonial history and scientific endeavor. All of
the freezer room. In it, a bank of more than a dozen tall
these fragments were assembled inside the box.
REVCO –20°C freezers, wired up to alarms, produced a deaf-
ening white noise.
Fragment 2: New York, 2009
Within these three rooms a rotating cast of tech-
Joanna’s story begins in a semirural region of the United nicians–known as “serum archivists”–whose work is sub-
States in the fall of 2009. She was at the State University of sidized by an NIH grant, carefully transferred old blood
New York at Binghamton to visit a biological anthropolo- samples, many of which have never been analyzed, into
gist named Ralph Garruto, who maintains a large collection a form that will facilitate their use in genomic research.
of old, cold blood samples as part of what he has named Since 2003, day in and day out, these serum archivists have
a “serum archive.” She had been researching the history of methodically assessed the quality of each blood sample,
anthropological blood collection undertaken in Amazonia transferring materials from cracked glass vials into plastic
and Melanesia under the auspices of the IBP. She wanted cryovials.

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Back in his office, Ralph showed Joanna the detailed


technical manual of protocols he has produced for archiv-
ing serum. It was Ralph’s hope that this effort would allow
these fragments to be assembled into new forms of knowl-
edge that might help address questions of health and illness
among descendants of the people whose blood samples are
in the freezers.

Fragment 3: Canberra, 1960–1970s


From the late 1960s, the human biology lab at the John
Curtin School of Medical Research at the Australian Na-
tional University was a major center of international bio-
logical research. It was led by Robert Louis Kirk, a modest, Figure 2. Bob Kirk’s framed copy of Norman Tindale’s Tribal Boundaries
quiet man who grew up in a middle-class family in cen- in Aboriginal Australia (1974) on the wall of a temporary tearoom in the
tral England. In the early 1950s, after completing graduate soon-to-be-demolished old building, John Curtin School of Medical Re-
studies with Lancelot Hogben at Birmingham University, he search, Australian National University, Canberra, May 30, 2011. Credit:
was recruited to the University of Western Australia in Perth. Emma Kowal.
The university had been established in 1911 as the first
free university in the British Empire and sought to develop
of the 500 different language groups across the country
the fledgling state economy by investing in human capital.
(Figure 2). It was a talking point when Kirk showed visitors
Student enrollments increased fourfold in the two decades
through the lab. Seeing the map when she visited, now
after World War II as the university benefited from a boom-
displaced from its original site and relegated to a temporary
ing economy, increased demand for higher education, and
tearoom, Emma imagined that, for Kirk, it had functioned
no local competition from other institutions. Kirk benefited
as an organizing device, marking out territories repre-
from the demand for academics and was recruited by Ho-
sented in his collection and those not yet assembled, and
race (Harry) Waring, a close colleague of Hogben’s who had
as a reminder of a scientific puzzle to be solved through the
been appointed as the first professor of zoology in 1948. At
laborious production of protein types.
this juncture, a series of chance events shifted Kirk’s scien-
By the time the IBP had come to a formal end in 1974,
tific interests from snail to human evolution. Kirk quickly
some within Kirk’s lab felt that his knowledge of both Abo-
recognized that the enormous state of Western Australia,
riginal genetics and Aboriginal people was itself fragmen-
which takes up a third of the Australian continent and is
tary. He had no Aboriginal friends and few acquaintances.
only sparsely settled by Europeans, presented a remarkable
His own collecting trips had been short and mainly con-
scientific opportunity to gain insights into human evolution
fined to the early 1960s. His scholarly contributions to the
by collecting blood in Aboriginal settlements.
peopling of Australia and the Pacific were based on simple
Over the next decade, he initiated the collection that
descriptive genetics that did not incorporate theoretical de-
became his life’s work. By the time the IBP began planning
velopments in the field.
in earnest in 1965, Kirk had already made many field trips
While the map and the starch gel factory promised sci-
to the north of Western Australia and published articles
entific mastery of Aboriginal biology, that promise turned
on the novel blood proteins he had found among Indige-
out to be fleeting. By the time direct DNA methods were es-
nous groups there. He was sought out to lead a major IBP
tablished in the late 1980s, Kirk had lost touch with the most
study of human adaptation among Australian Aborigines.
recent science. The man who had devoted his career to the
His collection expanded exponentially after he moved to the
study of human evolution had failed to adapt. After his re-
John Curtin School in 1967 and assembled a state-of-the-
tirement, he abandoned the collection, refusing to answer
art starch gel laboratory. His facility attracted thousands of
routine questions his former staff would occasionally put to
samples from researchers impressed by his ability to rapidly
him about it.
produce multiple blood group and protein results.
Although his lab analyzed samples from around the
Fragment 4: Bethesda, Maryland, 1960s and
world, Australian samples were always Kirk’s special inter-
1970s
est. Anthropologist Norman Tindale’s groundbreaking map
of Australia, produced in 1974, dominated the tearoom Daniel Carleton Gajdusek, the U.S. son of Hungarian-Slovak
of Kirk’s wing of the John Curtin School. Instead of the immigrants was a precocious child with an innate interest
state boundaries seen on conventional maps of Australia, in explorations, scientific and otherwise. He grew up
Tindale’s two-meter-high map depicts the territory of each in Yonkers, New York, where he was an avid Boy Scout,

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Indigenous blood and ethical regimes  American Ethnologist

keeping meticulous notes on the many excursions made was not secretive about his liaisons, bringing his “boys” on
by his troop. From a young age he had interests in science board the Alpha Helix, which prompted the ship’s captain
and visions of his own future greatness, which he began to to write to administrators at the Scripps Institute that he
invest in at the University of Rochester, where he studied wished Gajdusek would employ greater discretion. In field
physics, biology, chemistry, and math. notes that he later copied, bound, and donated to several
After earning a medical degree from Harvard and do- university libraries, Gajdusek recorded details of his sex-
ing postgraduate work in neurology at Columbia, Gajdusek ual encounters and documented the challenges of bringing
conducted virology research at the Walter Reed Army Med- up boys he had adopted from the Pacific and relocated to
ical Service Graduate School. There, he met Dr. Joseph the United States. His meticulous archiving of the details of
Smadel, who would later create a position for him as part both enterprises—boys and blood—but especially the for-
of the extramural research program at the NIH. After gradu- mer, would come back to haunt him in the 1990s when,
ate school and before joining NIH, he spent time in Tehran in Europe, he was convicted of child molestation and sen-
and in Melbourne, where he studied with disease ecologist tenced to 12 months in prison and five years probation. He
and Nobel Laureate MacFarlane Burnet and initiated a life- never returned to his lab or to the United States.10
long interest in Pacific peoples. It was during these early It was under this shadow of ethical violation that
years that Gajdusek became interested in the relationship Ralph inherited his mentor’s collection of human frag-
between population and disease. He began to collect blood ments. Ralph believed Gajdusek had suffered greatly in his
samples as he traveled, to be subjected to various kinds of final years (he died in 2008) and urged Joanna to resist a
immunological and virological analyses back in the lab. simplistic or sensationalist characterization of Gajdusek’s
Though he spent a good deal of time in the field while actions. She has taken this injunction seriously. Neverthe-
at NIH, by the late 1950s, Gajdusek had become director less, other perceptions of Gajdusek’s transgressions con-
of laboratories of virology and neurological research at the tinue to compete with and, in some cases, overshadow his
agency. Visitors came from all over the world to learn about scientific legacy.11
the innovative work he was leading on slow viruses (later
identified as prions) and other kinds of epidemiological
mysteries. Ralph Garruto would later join the lab, first as a
Fragment 5: Canberra, 1990s–2011
postdoctoral fellow, then as a formal member. He soon be-
came a close collaborator. In the world of human genetics, the 1990s were marred
In 1976, Gajdusek was awarded the Nobel Prize for hav- by controversy surrounding the Human Genome Diver-
ing discerned the etiology of kuru, a degenerative neuro- sity Project. Efforts to sample communities, initially labeled
logical disease affecting the Fore people of the Papua New “isolates of historical interest,” were criticized as grossly
Guinea highlands that had puzzled scientists for decades. insensitive attempts to steal the genetic resources of in-
Crucial to his success had been his ability to work with col- digenous communities and patent them for the benefit
lections of infected brains and other body parts collected of scientists, governments, and multinational corporations
from the Fore people and frozen at NIH (Anderson 2014). (M’Charek 2005; Reardon 2005). The World Congress of
Beyond his research on kuru, Gajdusek was an in- Indigenous Peoples dubbed it the “vampire” project. The
veterate collector of blood and other fragments and took most extreme criticism held that the project was part of a
advantage of all of the resources at his disposal to make conspiracy to create biological weapons that would selec-
his assemblages. They included the Alpha Helix, a floating tively target indigenous people, a biotechnological means
laboratory managed by the Scripps Institute for Oceano- to complete the genocidal project of colonization (Indige-
graphic Research and funded by the U.S. National Science nous Peoples Council on Biocolonialism 2000).
Foundation. In 1972, Gadjusek took the Alpha Helix to col- In the wake of this controversy, Bob Kirk’s collection
lect blood from a range of populations in the island regions was shut down in the late 1990s by Judith Whitworth, the
of the Western Pacific (Radin 2012; Widmer 2014). This work then head of the John Curtin School, in what head of depart-
was undertaken in conjunction with the IBP. His field notes ment Simon Easteal called a “voluntary moratorium” on re-
from that voyage reveal the challenges he faced in making search. Using the samples had, by that point, raised a range
such collections and the extent to which he relied on a of ethical concerns. One might say the collection could
colleague in Australia, Bob Kirk, to analyze the thousands of no longer “hide the length of its network” (Redfield 2002).
samples he accumulated. When one of the freezers on the The absence of formally documented informed consent—
ship failed, it was Kirk that Gajdusek appealed to for help. indeed, most samples had been collected before such a
Gajdusek collected boys as well as blood. During his standardized protocol existed—was the most obvious eth-
Western Pacific trip, as on many others, Gajdusek estab- ical obstacle that left the university highly vulnerable to cri-
lished intimate and, in some cases, sexual relationships tique in an environment of worldwide indigenous concern
with a number of young, male islanders he encountered. He about the “vampiric” tendencies of genetic researchers.

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American Ethnologist  Volume 42 Number 4 November 2015

It was a difficult time for Simon, who had assumed cus- today entails a set of practices and assumptions that are not
todianship of the collection a few years before. Sue Ser- part of the management of the collection under Ralph Gar-
jeantson, a key figure in international human leukocyte ruto’s stewardship in the United States, even though the two
antigen (HLA) research, had been the guardian of the collec- collections are partial mirror images, potentially containing
tion from the time Kirk retired in 1987 until 1994, when she aliquots of samples collected from the same people.
left the lab to become the ANU deputy vice chancellor for Scientists responsible for the Australian samples were
research. Simon, who had taken up the John Curtin School unable to keep up with the mutating social landscape:
post vacated by Kirk in 1987, had been involved with the social and scientific worlds fell out of sync. In Australia,
collection from that time but officially assumed guardian- the task of reestablishing the coproduction of indigenous
ship after Serjeantson left. In the decade that followed the biospecimens in the present has become a project of piec-
closure of the collection, Simon made a number of unsuc- ing together fragments.
cessful attempts to establish what should be done with it, There are at least three aspects to these multiple and
until Emma became involved. All the while, the collection concurrent acts of reassemblage.13 First, Kirk himself must
itself was fragmenting under institutional pressures and sci- be reassembled as an ethical subject. Ethical guidelines
entific neglect. produced specifically for research in Indigenous Australian
At the time of Emma’s visit to the lab, the wing of the communities make it clear that the “motivations” and “in-
old building where Kirk’s laboratory once stood had been tegrity” of the researcher are critical factors in judging the
recently demolished to make way for Phase 2 construc- ethics of research (NHMRC 2003). A simulacrum of a pre-
tion of the new building. The place where it once existed empirical mode of knowledge production, only an ethical
was empty space 20 meters above a cavernous hole in the person can produce ethical research.14 As the collection of
ground. The collection that had been housed in the lab samples preceded the doctrine of formally documented in-
was in fragments, dispersed among various freezers set at formed consent and the exact circumstance of collection
various temperatures throughout the old building and the can never be known, establishing the intentions that guided
new: a clotted sample here, a box of plasma samples there; the initial assemblage of body fragments now understood to
a few hundred extracted DNA samples in one place, sam- be indigenous has become crucial.
ples elsewhere that had evaporated, leaving a small yellow- These intentions have sent Emma into the archives
ish deposit; even a closely wrapped and taped frozen parcel to excavate Kirk’s character. His mention of using inter-
marked “R L Kirk” that had never been opened. preters when collecting samples, his distaste for the as-
Emma followed Simon around the old building, from sembly line sampling practices of other expeditions he
freezer to freezer, looking for boxes of samples, as he told witnessed,15 ethical advice given to an anthropologist col-
of recent freezer malfunctions that threatened parts of the league, and his wife’s involvement with land rights activism
collection. The old building was to be completely vacated in are all fragments that can be drawn together to make an
a few months. Lab administrators argued there was insuffi- argument about his moral fiber—and, therefore, the legit-
cient freezer space in the new building to accommodate the imate use of the biological tissues he extracted and chose to
collection and urged Simon to find a permanent home for it preserve.
elsewhere. Given Gajdusek’s personal history, his biography may
be unlikely to stand up to similar ethical scrutiny. His later
career was marred by accusations of child molestation that
Reassemblage: Scientists, samples, personhood
led to his voluntary exile to a remote community in north-
Emma is currently working with Simon, his university, and ern Europe. Kirk, meanwhile, was known as a quiet En-
a group of senior Indigenous leaders to develop a man- glishman with a devoted wife and two daughters. He greatly
agement strategy for the collection. This attempt to thaw admired Gajdusek, who sent him samples and was a wel-
the collection takes place in a politico-ethical environment come visitor to his lab and his home. Ironically, it is the
that has mutated to the point that Kirk would be unlikely to scandalous American’s samples that can still be used to pro-
recognize it. Over the last two decades, key organizations duce biomedical knowledge, while in recent years the mild
and Australian national agencies have acknowledged the Englishman’s collection has been most productive in con-
continuities between oppressive colonial practices and tributing ethical knowledge to the moral economy of In-
contemporary research on Indigenous people and have digenous research in Australia.
demanded a range of reforms to give Indigenous people We have attended to the personal histories of Kirk and
more power over research. These organizations include Gajdusek here not to pass judgment on intimate encoun-
RAFI, the Indigenous Peoples Council on Biocolonialism, ters of the scientific or the sexual kind but to highlight the
tribal councils and national indigenous organizations, varied political and ethical mutations induced through
and government agencies in Australia, Canada, and New the passing of time amidst different moral economies. In
Zealand.12 As a result of these shifts, using the collection the future perfect tense, much that is currently considered

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Indigenous blood and ethical regimes  American Ethnologist

ethical will have been wrong, regardless of how well it institutionally and physically, a fact dramatically illustrated
conforms to contemporary norms. by the progressive demolition of the building that housed
As Emma has become actively involved with the reha- it. The Tindale map that once hung proudly on a wall of the
bilitation of Kirk’s collection through her collaboration with wing was similarly vulnerable, exiled to a temporary tea-
Simon, she is acutely aware of her wager with the future. room, as the architects of the new building decreed that
Her experience working in Indigenous health and her nothing could be hung on its walls.
contacts in the field have made her appear a valuable inter- To protect the collection, Emma, Simon, and the In-
locutor for scientists who seek to conform to current ethical digenous leaders with whom they collaborate, must work
approaches and provide benefits to Indigenous people. She to shift the samples into a quite different mode of vulner-
has been instrumental in developing an Indigenous con- ability. They must reestablish the vital link between these
sultative process that is led by national Indigenous leaders. biological objects and the vulnerable Indigenous subjects
Responsibility for the consequences of the collection’s from whom they were derived. The samples will thereby be
rehabilitation will be borne not just by scientists but also transformed from vulnerable objects that can be destroyed
by Emma and the Indigenous leaders with whom she is into vulnerable subjects that demand protection. In other
collaborating. words, to reduce the vulnerability of the collection, it must
She is uneasy about her potential role in reigniting be made vulnerable in a fashion intelligible to contempo-
racial science if the attempt to construct an ethical ap- rary Australian ethical regimes.
proach to indigenous genomics fails. She is equally uneasy The effort to reconstitute the Indigenous collection is
with the possibility of success. As we discuss below, an indi- also a fragmentation of the collection as a whole. On a sub-
genized form of genomic research in Australia could ensure sequent visit to the John Curtin School, Emma found the
the protection of vulnerable indigenous peoples and their resourceful lab technician hired to go through the archives
biospecimens, but it could also accelerate the development with the wooden box on her desk, lid open. Some of the
of fragmented personhood contained in all frozen samples. index cards had been turned perpendicularly, protruding
The coproduction of Kirk’s collection as a viable above the other cards. These are the cards relating to the
biomedical resource in the 21st century requires the re- Indigenous community collections, singled out for easy ref-
assemblage not just of Kirk but also of his samples. To erence. The other cards are those that continue to stand,
rehabilitate the collection, each vial of stored blood also seemingly unproblematically, for communities, races, and
requires reassembly into a person with the capacity to give ecosystems that persist in freezers beyond the Australian
or withdraw consent. Crucially, this process would not usu- continent, at least for now.
ally be required in Australia if the samples were not marked In the United States, Ralph views the collection as pri-
as “indigenous.” While Australian ethical guidelines allow marily a biomedical—and not an indigenous—one. He is
collections of old, cold blood to be stripped of identifiers aware that emerging concerns about secondary uses of
and used by scientists with a waiver of consent, this process samples, which have resulted in instances of repatriation,
is cautioned against where “participants are vulnerable” may be endangering the persistence of Gajdusek’s collec-
(NHMRC 2007). tion (BBC News 2015; Couzin-Frankel 2010; Harmon 2010).
The construction of Indigenous people as vulnerable It is true that an indigenous community’s lawsuit against
within the dominant ethical regime (Kowal 2014) has led re- researchers who it claimed misused its samples has led to
searchers to find ways and means to piece together genealo- new suggestions for the appropriate use and reuse of pre-
gies from the sample archive, travel to remote communities, served biomaterials (Mello and Wolf 2010). Yet these sug-
contact donors or, in most cases, their descendants, and gestions have not become requirements. In the meantime,
ask them to make decisions about the use of their deceased Ralph and many others who manage such unique mate-
kin’s blood. It requires historical expertise. The ongoing use rials do so in an ethical environment that may eventually
of the samples may require a “managed collection” to be set be affected by novel articulations of vulnerability and harm
up that would be under the control of Indigenous people. emerging in the United States and beyond.
This massive undertaking requires scientists in the present
to reassemble themselves as specialists in Indigenous con-
Conclusion: Mutating personhood
sultation and to call on the expertise of historically oriented
anthropologists. In this article we have examined how mutating ethical
This process highlights the operation of two very dif- regimes have differential effects on the contemporary man-
ferent notions of vulnerability. As pieces of fragmented agement of two collections of human biospecimens. One
personhood now unmoored from an organizing principle collection, now located in the United States, and the other,
of scientific authority (Bamford 2007), the samples have now located in Australia, were assembled under the aus-
become highly vulnerable to destruction. When Emma pices of international collaborative research into human
first visited Simon, the collection was endangered both adaptability. Carleton Gajdusek and Bob Kirk, the two

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American Ethnologist  Volume 42 Number 4 November 2015

scientists who made these collections during the Cold War, that indigenous samples currently require in Australia and
shared both samples and assumptions about the present in some domains in the United States may come to be
and future utility of these materials. required for all biospecimens to remain in sync with social
However, the ways in which these samples can be worlds over time.
used in the 21st century reflects variable and mutating The possibility that indigenous samples are, as it were,
understandings of vulnerability and protection, scientific the leading edge of personhood raises interesting questions.
authority, and the politics of indigeneity. Recognizing the That the Indigenous Australian samples in Kirk’s collection
divergent fates that the two collections have met in the require reassemblage into subjects marks them out as
present provides a new vantage point for asking questions more human, less able to be fragmented, than other sam-
about what it means to do “ethical” research, particu- ples. These indigenous samples have become once more
larly involving communities who come to be marked as fundamental and exceptional, no longer as the substance
vulnerable. of the most biological humans but, instead, as the most
Since the time that Kirk and Gajdusek initially assem- human of biospecimens. It was once the supposed lack of
bled their collections, new configurations of law, bioecon- exposure to European influence that made indigenous
omy, and justice have emerged that require new forms people the most biological of all humans. Today, it is the
of coproduction if collections are to remain productive of recognition of the devastating effects of empire that may
knowledge about the human species and about human sub- make them the most human biospecimens—where to be
jects research. Use of the samples in Kirk’s freezers is shaped vulnerable is to be human.
in this moment by locally specific ethical forms innovated This deceptively simple formulation highlights a con-
to mitigate potential harm from research in Indigenous tinuity between the role of indigenous people in science
communities. As yet, it is unclear whether every sample in and cultural politics before and after the major shifts in
Kirk’s and Gajdusek’s cosmopolitan freezers—or, for that indigenous rights discourse in the 1980s (Niezen 2003).
matter, any frozen human-derived samples—may be mu- The meaning of “vulnerability” shifted dramatically, but
tating in the ways Kirk’s Indigenous samples have and, thus, in both old and new formulations, indigenous people
will eventually require the same work of coproduction. remain exceptionally and fundamentally human, at least
As Simon, Emma, and their colleagues work to re- in the realm of science. In the 1960s, scientists sought to
assemble the Indigenous samples into persons, they may be salvage genetic material from communities around the
simultaneously reassembling the personhood of all biolog- globe who were made vulnerable to fragmentation by the
ical samples, beyond those from communities recognized encroachment of industrialization. In the 21st century,
as indigenous. Alongside the discourse of particularity vulnerability is used to refer to indigenous communities
that has produced indigenous-specific research guidelines, who are seen to be at risk of exploitation by scientists whose
some have argued that indigenous people have simply intentions must be policed. Will this language of vulner-
demanded what all research participants should want. ability become elevated beyond local contexts to a new
According to this view, it is indigenous peoples’ height- and global bioethical norm (Rogers et al. 2012)? If so, what
ened sensitivity to material and epistemic injury, rather mutations will it induce in the relationship between social
than their cultural or epistemological differences, that has and technical orders in highly varied national and local
come to drive indigenous-specific research guidelines. As a contexts?
review of ethical guidelines for indigenous genetic research We are especially ambivalent about the potential ex-
has argued, “Indigenous groups are most vulnerable to pansion of this biosociality of vulnerability from something
research exploitation and harm; therefore, identifying specifically “indigenous” to a general human condition. Is
principles that work for Indigenous people will lead to best this the development of democratic science, enabling better
practices for all populations” (Taniguchi et al. 2012).16 and more-just forms of ethical engagement and knowledge
This reading is supported by the popularity of production (Reardon 2012)? Or is this the encroachment of
“participant-centric initiatives” in literature on research in neoliberal forms of biological citizenship: the optimization
the “post-genomic” age (a term referring to the period since of personal biological productivity for individual gain (Ong
the human genome was first sequenced in 2000). These 2006)? Or is it something else, entirely?
articles argue that all research participants should have Moreover, we ask, in broadening claims to ethical pro-
control over what their samples are used for into the future, tection, is the paradigmatic Western subject, a transna-
should be offered the chance to contribute to research tional member of a sprawling and uneven biomedical and
design, and should even conduct their own research (Kaye technological marketplace, marking her- or himself as an
et al. 2012).17 In this emerging world where “participants equally vulnerable, exceptional subject? And could this uni-
are partners,” the humanity of indigenous biospecimens— versalizing gesture serve to erase, negate, or deny the ba-
a new way of consolidating the human—may be the future sis on which some indigenous people have come to make
of all samples. In other words, the work of coproduction claims on scientific authority (Reardon and TallBear 2012)?

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Indigenous blood and ethical regimes  American Ethnologist

This surfeit of questions erupts when we pry open the lids and Torres Strait Islander peoples of Australia, we capitalize Indige-
and doors of biomedicine’s freezers. nous, following Australian convention.
2. On the issue of race in the selection of isolates in Cold War
Although bioethicists are somewhat troubled by the
biology, see Lipphardt 2010.
questions old samples provoke, they offer solutions and 3. Radin discusses this history and its ramifications in a book,
policy frameworks (Ludman et al. 2010; Public Population forthcoming from University of Chicago Press.
Project in Genomics and Society: International Policy In- 4. The politics and values of exchange involved with Gajdusek’s
teroperability and Data Access Clearinghouse 2014; Steins- fieldwork have been beautifully interpreted by Warwick Anderson
(2000, 2008, 2013).
bekk and Solberg 2011). Reaching for a normative answer
5. Scholars have applied the idea of moral economy as a means
to the question of how old indigenous blood should be of tracing noncommercial forms of circulation and exchange of re-
managed in the present can provide comfort, making it ap- search materials (see Kohler 1994; Strasser 2005). Critiques of “bio-
pear that the mutations induced through time can be mas- capital” or “bioeconomy,” however, have highlighted the fallacy of
tered by ever-progressing bioethical norms. But as we have imagining the realm of knowledge production to be unmarked by
that of commodity production (see Cooper 2005, 2007; Helmreich
sought to show, shifting norms only further mutate what it
2008; Shapin 2008; Sunder Rajan 2006; Waldby and Mitchell 2006).
means to be vulnerable, biological, and human. Far from 6. This difference is generally attributed to the presence in the
impartial observers or ethical arbitrators, we recognize our United States of African Americans and to historical slavery. Politi-
location at the center of these uncomfortable possibilities. cal and public attention to Native American issues is overshadowed
All scholars, whether genome scientist, bioethicist, indige- by a focus on African Americans as the primary racial Other and
Hispanics as a second racial minority. In Australia, Indigenous peo-
nous studies scholar, historian, or anthropologist, are in-
ple are the primary racial Other, illustrated by the fact that Aborig-
volved in and mutate through the act of prying. These are inal and Torres Strait Islander status is usually the only ethnoracial
the conditions and the stakes of contributing to fragmented classification asked about on forms.
attempts to understand humans as subjects and objects of 7. Coproduction is a specific intervention in a broader science
the science of life. studies project of destabilizing and reconstituting boundaries be-
tween nature and culture (e.g., Haraway 1991, 1997; Latour 1999,
2005).
8. Elsewhere, we have used the term abductive co-production to
Notes call attention to the recursive ways technical and social orders must
be realigned again and again. See Kowal et al. 2013.
Acknowledgments. Kowal’s research is supported by an Aus- 9. We are in conversation here with Bruno Latour’s (2004) argu-
tralian Research Council Discovery Early Career Research Award. ments that critique has “run out of steam” and should “add reality”
We would like to thank Ralph Garruto and Simon Easteal for their and not “subtract reality” from its objects of study.
ongoing commitments to thinking through these issues with us, 10. Anderson (2008) writes perceptively and sensitively about
and Warwick Anderson for his ongoing support. We also extend this aspect of Gajdusek’s career.
our thanks to colleagues who provided valuable feedback when 11. See, for example, the controversial material and focus pre-
versions of this article were presented at the following workshops sented in Lindquist 2009.
and conferences: the Postgenomic Perspectives on Human Diver- 12. National guidelines similar to Australia’s have been produced
sity Workshop at the University of Sydney; the Australian and New in Canada and New Zealand (see Canadian Institutes of Health Re-
Zealand Society for the History of Medicine Conference; the Uni- search 2007; Health Research Council of New Zealand 2008).
versity of Melbourne History and Philosophy of Science Research 13. In other work in progress, Emma explores this as “ethical re-
Conference; the Annual Meeting of the American Anthropological habilitation.”
Association; the Australian Anthropological Society conference; the 14. Michel Foucault pointed out that Descartes’s “non-aesthetic
Max Planck Institute for Social Anthropology, Halle; the Lipphardt subject of knowledge” has been a major feature of modernity (see
Group at the Max Planck Institute for the History of Science, Berlin; Rabinow 1997:279). This apparent reversal points to a temporal di-
the Norwegian Museum of Technology and Science, Oslo; the His- mension of the shifting nature of “objectivity,” wherein ideas about
tory of Science colloquium at UCLA; the History of the Life Sci- what makes a reliable knower in the present are used to test the le-
ences since 1945 workshop in Pittsburgh; “Breaking Scientific Net- gitimacy of research materials accumulated in the past (see Daston
works” at UC-Davis; and the STS Life Sciences Workshop at Har- and Galison 2010).
vard’s Kennedy School. 15. These were large multidisciplinary expeditions to study the
1. Populations now known as “indigenous” were referred to us- biology and culture of Indigenous Australians from many different
ing various terms, including primitive, in the language of 19th- and communities run by the University of Adelaide from 1926 to 1976.
early 20th-century science. We use the contemporary term indige- 16. A recent high-level NGO report into Indigenous health re-
nous to refer to the communities whose blood specimens are the search similarly noted its “pioneering role in the reform of research
focus of this article. Indigenous in our usage refers to descendants in Australia.” See Brands 2014:1.
of precolonial populations in settler colonial nations, for example, 17. Richard Rottenburg (2009) refers to these shifts as the rise of
Aboriginal and Torres Strait Islander peoples in Australia, Native “civic science” or “lay expertification.”
Americans in the United States, First Nations in Canada, and Maori
in New Zealand. We use indigenous biospecimens in this article to
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New Guinea or Turkey, are indigenous biospecimens in the context 2006 The Contradictory Spaces of Postcolonial Technoscience.
of the Australian collection we discuss. In referring to the Aboriginal Economic and Political Weekly 41: 210–217.

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