As new medical technologies are developed, more and more human tissues—such as skin, bones, heart valves, embryos, and stem cell lines—are stored and distributed for therapeutic and research purposes. The accelerating circulation of human tissue fragments raises profound social and ethical concerns related to who donates or sells bodily tissue, who receives it, and who profits—or does not—from the transaction. Catherine Waldby and Robert Mitchell survey the rapidly expanding economies of exchange in human tissue, explaining the complex questions raised and suggesting likely developments. Comparing contemporary tissue economies in the United Kingdom and United States, they explore and complicate the distinction that has dominated practice and policy for several decades: the distinction between tissue as a gift to be exchanged in a transaction separate from the commercial market and tissue as a commodity to be traded for profit.
Waldby and Mitchell pull together a prodigious amount of research—involving policy reports and scientific papers, operating manuals, legal decisions, interviews, journalism, and Congressional testimony—to offer a series of case studies based on particular forms of tissue exchange. They examine the effect of threats of contamination—from HIV and other pathogens—on blood banks’ understandings of the gift/commodity relationship; the growth of autologous economies, in which individuals bank their tissues for their own use; the creation of the United Kingdom’s Stem Cell bank, which facilitates the donation of embryos for stem cell development; and the legal and financial repercussions of designating some tissues “hospital waste.” They also consider the impact of different models of biotechnology patents on tissue economies and the relationship between experimental therapies to regenerate damaged or degenerated tissues and calls for a legal, for-profit market in organs. Ultimately, Waldby and Mitchell conclude that scientific technologies, the globalization of tissue exchange, and recent anthropological, sociological, and legal thinking have blurred any strict line separating donations from the incursion of market values into tissue economies.
About the Author
Catherine Waldby teaches medical sociology at the University of New South Wales. She is the author of The Visible Human Project: Informatic Bodies and Posthuman Medicine and AIDS and the Body Politic: Biomedicine and Sexual Difference.
Robert Mitchell is Assistant Professor of English at Duke University. He is a coeditor of Data Made Flesh: Embodying Information and Semiotic Flesh: Information and the Human Body.
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Tissue EconomiesBLOOD, ORGANS, AND CELL LINES IN LATE CAPITALISM
By Catherine Waldby Robert Mitchell
DUKE UNIVERSITY PRESSCopyright © 2006 Duke University Press
All right reserved.
Chapter OneBlood Banks, Risk, and Autologous Donation
THE GIFT OF BLOOD TO ONESELF
Tissue Banks As the name implies, tissue banks are central institutions in regulating various tissue economies. These institutions solicit tissues from donor populations or medical intermediaries (clinics, pathology laboratories), accumulate and process them in various ways, and redistribute them for research or therapeutic applications. Some aspects of contemporary tissue banking have their origins in the nineteenth-century medical museum, established to collect normal and pathological biological specimens-organs, tumours, skeletons, fetuses-for purposes of medical education and anatomical studies. As medical interest shifted in the twentieth century from gross anatomy to the body's biochemistry and cellular structure, such collections of organs were displaced by tissue samples, used to research particular medical conditions or epidemiological trends in populations (Lawrence 1998). With the creation of the first blood depots between the world wars, tissue banks also became places where tissue could be moved from body to body as therapy.
The term "tissue bank" encompasses a wide range ofbiomedical practices and functions. The Nueld Report on ethical and legal issues in human tissue management in the United Kingdom summarizes the different kinds of tissue banks: "The term tissue bank encompasses both institutions that handle primarily fresh tissue and those that maintain collections of preserved tissue.... There is also a distinction to be drawn between banks that supply tissue primarily for therapy, and those that supply it for research purposes.... Finally, tissue banks may operate simply as central stores, providing research workers or surgeons with access to certain tissue, or those who organise them may pursue a more active policy of organising collection and distribution" (Hurley 1995, 29).
Unlike genetic databases, which are primarily concerned with managing genetic information derived from tissue samples, tissue banks are concerned with the storage, research, and therapeutic applications of the "wet" biological material itself, rather than sequence information abstracted from the material. Tissue banks may be public, national institutions, like the National Blood Service (NBS) in the United Kingdom, or for-profit enterprises like the private umbilical-cord-blood companies now starting up around the world (see chapter 4). Virtually every organ and tissue type in the body has its cognate tissue bank, and citizens in industrial nations are more and more likely to have some fragment of their body retained in a tissue bank: "There are now brain tissue banks, breast tissue banks, blood banks, umbilical cord banks, sperm banks, and tissue repositories for studying aids, Alzheimer's, mental illnesses, and aging. More than 282 million archived and identifiable pathological specimens from more than 176 million individuals are currently being stored in United States repositories. At least 20 million new specimens are added each year.... Virtually everyone has his or her tissue 'on file' somewhere" (Andrews and Nelkin 2001, 4-5).
As the quote from the Nueld Council Report states, tissue banks may exist primarily for research purposes or for therapy, or they may combine these functions. Therapeutic tissue banks are those that transfer tissues from donors to recipients, rather than from donor to laboratory as research-oriented banks do. The most familiar and oldest of these is the blood bank, first termed "bank" by Bernard Fantus, an American physician who was among the early developers of systems of blood storage. "Noting the process involved deposits and withdrawals, he came up with a name for the facility: blood bank" (Starr 2001, 120). Several other kinds of tissues can be banked for therapeutic or reproductive purposes. Skin can be donated posthumously, or after surgery, stored for up to three years, and used for burn treatments. Bone can be procured during hip replacements, stored for up to five years, and used for limb reconstruction or treatment after bone cancer. Heart valves and corneas can be banked (Hurley 1995). Sperm and embryos can be donated, frozen, and used later for reproduction. Umbilical-cord blood is increasingly harvested during birth, banked, and used to treat blood disorders. Human embryonic and adult stem cells can also be banked, and the next chapter will examine the UK Stem Cell Bank, the first national public stem cell bank in the world, in some detail.
Each of these institutions is the site for accumulating valuable tissues, but as we discussed above, the value of human tissue is complex and overdetermined by considerations of ontological status, clinical efficacy, knowledge production, social relationships, and market forces. The management of tissue banks may involve mediating between conflicting demands arising from these values. Tissue banks may find themselves abruptly enmeshed in a complex biopolitical field. Recent events at the Alder Hey Children's Hospital in Liverpool are a case in point. In common with many other hospitals, Alder Hey harvested organs during postmortems, and over a number of years built up a large collection of tissue for research and teaching. Most of the parents of children who had died in the hospital were unaware that a postmortem had taken place or that organs had been retained, because they had not been asked for formal consent. In 1999 a community health director, concerned that the lack of formal consent contravened the Human Tissue Act and the rights of parents, made the existence of this collection public. Moreover, the hospital did not have an active research program that used the tissues, so their retention appeared somewhat gratuitous. This revelation caused a scandal and led to an independent inquiry in 2000 into "the removal, retention and disposal of human organs and tissues following post mortem examination at Alder Hey" (Royal Liverpool Children's Inquiry 2001, 5). Parents who were informed of the practice as part of the inquiry or through media coverage reacted with grief and anger. Some stated that they felt as though the hospital had robbed them of their child, violated their trust, and exploited them at their most vulnerable moments. Many parents and relatives demanded possession of the retained organs and held second funerals, stating that they felt as if their child had died all over again (Royal Liverpool Children's Inquiry 2001).
Here we can see that a paternalistic, medically driven approach to the collection of tissues has failed in the task of managing the different meanings and values that tissues have for the various parties involved. For medical researchers, retained organs have primarily epistemological and pedagogical value, a value somewhat neglected in the Alder Hey case. For grieving parents, retained organs are signifiers of their dead child, objects of loss and mourning. Their unauthorized harvesting and retention is a violation of both the child's body and their rights as parents to control the disposal of that body in a loving and dignified way. The hospital had failed to modify its procedures in line with the general move toward better enforcement of the rights of patients and exhaustive use of consent procedures recommended in a range of inquiries and reports produced in the United Kingdom throughout the 1990s. These reports in turn reflect changes in public attitudes about medical treatment of the human body, including, as we have already described to some extent, a strengthening human rights discourse around biomedicine and the respect owed to human bodies, and increased awareness of the commercial and health value of tissues and organs (Laurie 2001). These changes have increased the complexity of values that tissue banks and collections like those at Alder Hey hospital must try to manage. In response to the Alder Hey events, a new body of legislation, the Human Tissue Act 2004, has been introduced in Parliament to strengthen the requirements for consent where tissue is removed from the deceased.
Blood Banking In this chapter we focus on one kind of human tissue-peripheral blood, the blood which circulates throughout the body, in contradistinction to umbilical cord blood, which is discussed in chapter 4. Therefore this chapter follows on from our analysis of blood banking begun in the Introduction. We will first discuss the ways that blood banking developed in the years following Titmuss's study, and the implications that these developments have for his analysis. As we have seen, Titmuss argued that an exclusive reliance on a gift economy for blood was a strategy inherently able to manage in a nonconflicting way the various values attributed to blood. It would ensure a clean supply, protect the dignity of both donor and recipient, promote positive, inclusive social relationships, and distribute blood equitably from those who could afford to give to those in need, irrespective of ability to pay. We will consider how this strategy failed to reconcile the interests of donors and recipients, and the values of good citizenship and public health, in the wake of changing demands attendant on new treatments and the rapid globalization of the blood supply. We will also consider the rise of a new kind of gift economy for blood, the autologous donation, or the donation of blood to oneself. We will argue that this autologous economy is a response to the blood bank's ongoing difficulties in harmonizing competing interests and values. While we will focus primarily on Britain, we will also draw on developments in the United States and France.
At the time Titmuss wrote The Gift Relationship, the ontological and civil status of blood donation was more straightforward in some important respects than it is today. There were two technical features of blood that contributed to its being theorized as a gift circulated between citizens. First, as we have already noted, blood was primarily transfused as whole blood. In Britain in 1975, six years after Titmuss's study was published, 90 percent of all transfusions were of whole blood (Martlew 1997). That is, the donor's blood was transferred in a single unit, in a stable form and composition, to a recipient. The National Blood Service (NBS), with a system of transfusion centers and subsidiary blood banks, acted as a storage and transfer point between a specific donor and a specific patient, although the identity of each remained unknown to the other. The bank itself made some technical interventions in the transferred substance: it added citrate to stop clotting, refrigerated the blood to slow deterioration, and ensured that handling conditions were sanitary to prevent contamination. It then distributed blood to hospitals for transfusion. So the NBS effectively acted as the collection and distribution point for units of blood that remained in a relatively stable form throughout the process, from point of donation to point of transfusion.
We suggest that this relative stability of the tissue transferred lent itself to Titmuss's theorizing of blood donation as the exchange of gifts between particular, though anonymous, persons. To some extent, the transfer of whole blood resembles the economy of contemporary organ donation: it is one-to-one, it transfers a stable entity that has had little medical alteration, it is nonreversible, and the recipient cannot generally repay the gift that is given. Several studies (Fox and Swazey 1992; Lock 2002; Rosengarten 2001) confirm that the organ recipient experiences this kind of tissue economy as highly personal. Transplant patients feel that "part of the donor's self or personhood has been transmitted along with the organ" (Fox and Swazey 1992, 36). Lock (2002) observes that it is common for organ recipients to worry about the gender, ethnicity, skin color, personality, and social status of their donors, and be concerned that the organ's "identity" may overtake them. The analogy with organ donation is admittedly imperfect: whole organs cannot be banked, so they must be transferred from donor to recipient in real time; whole organ donation is generally posthumous; and organs can only be given once, whereas blood is a renewable substance. The same person can donate repeatedly without great risk to his or her health. For these reasons whole organs have a greater aura of singularity and sacrifice than blood does, and seem likely to carry a greater ontological charge than a blood donation. Nevertheless, we would argue that the kind of whole blood transfusion assumed by Titmuss, in its simple, one-to-one ratio, lends itself to the specification of blood as an act of exchange between identifiable subjects. The blood given retains a relatively stable relationship to the donor-it designates a specifiable fraction of a particular person's body, and is incorporated in that ratio by another, particular person. Here the blood bank is understood to play a transparent role, simply facilitating the exchange without fundamentally altering its nature.
The second technical feature of blood banking at that time was its spatial limitations. Whole blood is a relatively fragile substance. It requires stringent conditions of sterilization, refrigeration, and handling to preserve its vital qualities. It is not readily transported across long distances. As Starr (1998) notes, this fragility had presented particular difficulties in the Allied war effort. The U.S. military was unable to transport whole blood to the front because it deteriorated too rapidly to endure shipment. Instead they shipped plasma (a more durable fraction of blood, without red blood cells), used to prevent shock. Plasma can keep for several months, does not require tissue typing, and can endure rough handling, and thus it lent itself to international export, although it proved less effective than whole blood in restoring health. The fragility of whole blood meant that after the war, civilian blood systems were nationally based and regionally organized. Initially nation-states did not export or import blood, but only collected it within the boundaries of national space. Hence the circulation of blood was readily conceptualized as part of the creation of horizontal, equitable relationships of national solidarity among citizens, and between citizens and the state.
In summary, the spatial limits of the whole blood economy were also the limits of the nation, and blood banks were primarily points for the exchange of whole blood units between one person and another. These two features of the blood supply in the late 1960s facilitated Titmuss's theorization of blood donation as a gift between citizens, a form of civil intersubjectivity and intercorporeality (Weiss 1999). However, within fifteen years of the publication of The Gift Relationship, the technical conditions of blood, the possibilities for its processing, circulation, and incorporation, had become quite different. The ratios of donation to transfusion and other kinds of incorporation (notably the self-administration of coagulant agents by hemophiliacs) changed dramatically, so that one-to-one donation was now the exception. At the same time, the kinds of space through which blood could travel had expanded and complicated dramatically. A burgeoning, transnational pharmaceutical industry played a crucial role in the commercial development of these changes, and in their strategic exploitation. These transformations and their consequences, discussed below, have helped to reconfigure the significance of the blood supply. It is now commonly regarded not as a distributor of health and a benevolent mediator between fellow citizens, but as a distributor of risk and illness and a dangerous mediator between clean and infected sectors of the population.
Fractionation and the Globalization of the Blood Supply Today whole blood transfusion is rare. In 1996 less than 5 percent of all transfusions in the United Kingdom were of whole blood (Martlew 1997). Most blood is transfused as fractions, subsets of blood proteins tailored to suit the clinical needs of the particular patient's condition. The fractioning of blood began during the Second World War, when the success of plasma encouraged biochemists in the United States to research other possible ways to break blood down into its components. Several fractions were isolated from liquid plasma during or soon after the war: fibrinogen, or clotting factor; a variety of gamma globulins, or antibodies, used to make vaccines; albumin, used as part of anti-shock therapy; anti-Rh factor, used in treating Rh+ babies born to Rh- mothers; and reagents useful for some laboratory tests. Plasma and albumin were not retained in a liquid form but freeze-dried, to be reconstituted at the point of transfusion. By 1950 the nonplasma components of whole blood could also be isolated into red cells, white cells, and platelets.
This isolation of blood proteins meant that blood could be used in much more flexible, strategic, and clinically targeted ways than whole blood. Unlike in the one-to-one economy dictated by the use of whole blood, a single blood donation could be broken down into its components and used by several patients. Starr (1998) reports that the biochemists in the United States involved in blood fractioning described it precisely as "blood economy," a system for the leveraging of the value of each unit of whole blood. He cites a description of "blood economy" provided by Charles Janeway, a biochemist involved in the early fractioning work: "Normally, [Janeway wrote,] if you collect four units of blood you can treat four individuals, assuming they need only one unit each. But if you first separate the liquid into red cells and plasma, you can then treat six individuals-four with the red cells and two with the plasma ... You can increase the blood's usefulness again if you first fractionate the plasma into albumin, gamma globulin, [and other components]. In this way you can treat a total of twenty-three people-all with the original four units" (Starr 1998, 178).
Excerpted from Tissue Economies by Catherine Waldby Robert Mitchell Copyright © 2006 by Duke University Press. Excerpted by permission.
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Table of Contents
Introduction: Gifts, Commodities, and Human Tissues 1
Part I. Tissue Banks: Managing the Tissue Economy 31
1. Blood Banks, Risk, and Autologous Donation: The Gift of Blood to Oneself 35
2. Disentangling the Embryonic Gift: The UK Stem Cell Bank 59
Part II. Waste and Tissue Economies 83
3. The Laws of Mo(o)re: Waste, Biovalue, and Information Ecologies 88
4. Umbilical Cord Blood: Waste, Gift, Venture Capital 110
Part III. Biogifts of Capital 131
5. Commodity-Communities and Corporate Commons 135
6. Real-Time Demand: Information, Regeneration, and Organ Markets 160
Conclusion: The Future of Tissue Economies 181
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