Cover image for Body bazaar : the market for human tissue in the biotechnology age
Title:
Body bazaar : the market for human tissue in the biotechnology age
Author:
Andrews, Lori B., 1952-
Personal Author:
Edition:
First edition.
Publication Information:
New York : Crown Publishers, [2001]

©2001
Physical Description:
245 pages ; 22 cm
Language:
English
Added Author:
ISBN:
9780609605400
Format :
Book

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Summary

Summary

Provides a look at the growing trade in human DNA, tissue, blood, bones, embryos, and other commodities and assesses the implications of such access to biological material and genetic information in terms of scientific research, law enforcement, and business.


Author Notes

A sociologist, science policy researcher, and teacher, Dorothy Nelkin has been a faculty member of Cornell University for most of her career. Born in Boston, Massachusetts, she worked as a senior research associate in the Science, Technology, and Society Program at Cornell University from 1969 to 1972. Her first book, Migrant: Farm Workers in America's Northwest (1971), reflects her interest in the process of social and science policy making. Nelkin's subsequent books present case studies of the various factors that affect governmental decision making and policy development. She has focused on the dynamics of controversy, the role of citizen's groups, the press, and governmental or legal authorities in most of her studies. Nelkin was involved personally in a science-related social controversy, when a power company proposed building a nuclear power plant on Cayuga Lake. She has moved on to wider-ranging controversies related to governmental housing, weapons research at MIT, methadone maintenance, textbooks and the creation-evolution debate, use of biological tests, the antinuclear movement in France and Germany, and AIDS. Two of her books, Science as Intellectual Property (1983) and Selling Science (1988), examine scientific information - who owns it, who controls it, and how it is presented to the public. Perhaps her most well-known book, Controversy: Politics of Technical Decisions, presents a diverse collection of case studies, especially valuable for classroom use. In 1992, the book appeared in its third revised edition.

Nelkin's prolific writing career has been supported by grants, as well as by visiting scholar and consultant positions. She has been awarded fellowships by the Guggenheim Foundation, National Science Foundation, and the Russell Sage Foundation. She has held visiting scholar appointments at Resources for the Future, Hastings Institute, and at research institutes in Berlin and Paris. Nelkin was an adviser for the Office of Technology Assessment and is a member of the National Advisory Council to the National Institutes of Health Human Genome Project. She also is a member and serves on the boards of directors of the Council for the Advancement of Science Writing, Medicine in the Public Interest, and Society for the Social Studies of Science. After her initial appointment in Cornell's Science, Technology, Society Program, Nelkin became professor of sociology at Cornell from 1972 to 1989 and is now professor of sociology and affiliate professor of law at New York University. Nelkin is best known for establishing the case study method in interdisciplinary science/technology/society studies.

(Bowker Author Biography)


Reviews 1

Booklist Review

The genetic gold rush is on. Genes are being patented, biomedical experts are forming companies, and the public is left confused about their rights in this bio-techno-commercial revolution. The nexus between lucre and lancet deeply concerns these authors in this jeremiad against the commodification of the human body. Writing with a normative purpose about the rights people should have concerning the genetic information of their body, Andrews and Nelkin decry in incident after incident the advantage the gene geniuses are tempted to take of patients' ignorance about what is done with their tissue or blood samples. A multibillion-dollar market already exists in genetic screening, a powerful force for avarice to create that next test that will land Dr. X on Easy Street. Viewing the state of play as pernicious to privacy, Andrews and Nelkin's worries about the dubious uses to which a person's DNA information can be put, for example, denial of health insurance or misidentification in a DNA "dragnet" of criminal suspects, are topical and potentially impact each person personally. A readable alarum. Gilbert Taylor


Excerpts

Excerpts

Prologue The Business of Bodies When John Moore, a Seattle businessman, fell ill with hairy cell leukemia, he went to a top specialist at the UCLA School of Medicine. He followed his doctor's orders, submitting to surgery to remove his spleen and other treatments. Afterward he returned to Seattle, thinking his disease was cured. But for the next seven years, the UCLA doctor told him to keep flying back to Los Angeles for tests. Moore thought these visits were necessary to monitor his condition, and he complied out of fear that the leukemia might reappear. But his physician had additional interests. The physician was not concerned only with his health, but was patenting certain unique chemicals in Moore's blood and setting up contracts with a Boston company, negotiating shares worth an estimated $3 million. Sandoz, the Swiss pharmaceutical company, paid a reported $15 million for the right to develop the cell line taken from Moore -- which the doctors had named the Mo-cell line. Moore began to suspect that his tissue was being used for purposes beyond his personal care when his UCLA doctor continued to take samples not only of blood but of bone marrow, skin, and sperm. When Moore discovered that he had become patent number 4,438,032, he sued the doctors for malpractice and property theft. (1) Moore felt that his integrity was violated, his body exploited, and his tissue turned into a product: "My doctors are claiming that my humanity, my genetic essence, is their invention and their property. They view me as a mine from which to extract biological material. I was harvested."(2) Considering Moore's case in 1990, the California Supreme Court held that doctors must inform patients, in advance of surgical procedures, that their tissue could be used for research. But the court denied Moore's claim that he owned his tissue. He had no property rights in his body, the court said -- so the profits should belong to the doctor and the biotechnology company. This was necessary, said the court, to encourage venture capital investment. The future of scientific progress was at stake. Judge Stanley Mosk dissented, expressing concern about giving companies "the right to appropriate and exploit a patient's tissue for their sole economic benefit -- the right, in other words, to freely mine or harvest valuable properties of the patient's body."(3) At a time when the techniques of biotechnology have enhanced the value of human tissue, Mosk was right to be concerned. Profound changes in federal law during the 1980s had encouraged corporate investment in academic research, especially in potentially profitable areas of biotechnology. Laws enacted at that time also allowed university medical researchers to profit from research they undertook, often with public funds. Following a pivotal 1980 U.S. Supreme Court case allowing the patenting of new life-forms, academic and government researchers as well as biotechnology companies rushed not only to publish their findings but also to patent them. This meant claiming ownership of the cell lines and genes of research subjects. The potential for profit from research on human tissue is turning people like John Moore into potential treasure troves. The business of human bodies is a growing part of the $17 billion biotechnology industry comprising more than thirteen hundred biotechnology firms.(4) Those companies extract, analyze, and transform tissue into products with enormous potential for future economic gain. Their demands for skin, blood, placenta, gametes, biopsied tissue, and sources of genetic material are expanding. The blood that we all provide routinely for diagnostic purposes is now useful for the study of biological processes and the genetic basis of disease. Infant foreskin can be used to create new tissue for artificial skin. Umbilical cords are valued as a source of stem cells -- a substitute for bone marrow transplants. Eggs and sperm are bought and sold for both research and in vitro fertilization, and embryos have been stolen. Cell lines derived from the kidneys of deceased babies are used to manufacture a common clot-busting drug. Human bones, valued today as a means to study human history and satisfy curiosity, are stored in museums and sold in shops as biocollectibles. Human tissue such as blood, hair, and DNA is a medium for artists. And human DNA can even be used to run computers, since the four chemicals -- represented by the letters CATG -- provide more permutations than the binary code. Researchers study specific human tissues in order to understand individuals' behavior and personality traits. To nineteenth-century and early-twentieth-century phrenologists, the size and shape of the brain were clues to behavior and intelligence. Scientists have also studied brain tissue to understand the behavior of individuals with special traits -- from the genius of Albert Einstein to the violence of serial killer Ronald Kray. During the eugenics movement in the early twentieth century, researchers looked to the "germ plasm" as a determinant of behaviors, including criminality, mental illness, intelligence, alcoholism, and poverty. (5) In the 1940s, hormones became the body substances defining personality and behavior. In the age of biotechnology, the body is speaking in new ways. Waste tissue such as hair, blood, and saliva, when subjected to DNA analysis, can reveal intimate and detailed -- and predictive -- information about a person. According to recent scientific claims, genes will reveal information about behavioral traits and future disorders, ranging from sexual preference to manic-depression, from colon cancer to shyness, from Alzheimer's disease to a tendency to take risks. Genetic information about the diseases an individual may develop during the course of his or her life may allow for the creation of beneficial therapeutic or remedial options, but it may also lead to employment or insurance discrimination.(6) Institutions have already used human tissue for purposes of social control. Law enforcement agencies extract DNA from tissue samples to identify the perpetrators of crimes. Body tissue is frequently used to identify suspected criminals, soldiers killed in action, Alzheimer's wanderers, illegal immigrants, putative fathers, those people likely to require extra health care dollars, descendants entitled to inheritance claims, and even the sexual liaisons of past and current presidents. Where do all these tissue samples come from? The range of sources is extraordinary. All babies born in the United States since the late 1960s have had blood taken at birth as part of a government-mandated newborn screening program intended to pinpoint diseases, such as PKU (phenylketonuria), for which early detection allows the possibility of remedial therapy. Some state public health departments keep those blood spots on file, and some have contracted with private companies to store them. Hospitals, research centers, and private depositories retain pathology samples and genetic data collected in the course of surgical procedures or research projects -- a fact unknown to most patients. The U.S. Armed Forces runs an Institute of Pathology that has stored tissue samples since 1917 and is still used as a research and clinical resource. Today the U.S. Department of Defense stores blood samples collected from all military personnel through its mandatory genetic testing program. This military repository, expanding at a rate of ten thousand specimens each day, will have more than 3.5 million specimens by 2001. The Centers for Disease Control stores tissue samples that were collected for public health surveys. Forensic DNA banks -- established in every state -- contain the DNA not only of convicts who have committed violent crimes, but in some cases of misdemeanants, victims, and family members as well. Private genetic testing companies are another source of tissue samples. Attracted by the lucrative possibilities of paternity testing, about fifty DNA laboratories have been accredited in the United States,(7) and the number of paternity tests has grown from 76,000 in 1988 to 247,000 in 1998.(8) 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.(9) At least 20 million new specimens are added each year. Some specimens are anonymized or coded and not identified with specific individuals; others carry patient names or codes that allow for personal identification.(10) Virtually everyone has his or her tissue "on file" somewhere. Expanding markets have increased the value of this tissue, and institutions -- hospitals, research laboratories, and the state and federal repositories that store tissue samples -- find they possess a capital resource. Access to stored tissue samples is sometimes included in collaborative agreements between hospitals and biotechnology firms. In one joint venture agreement, Sequana Therapeutics, a California biotechnology firm, credited the New York City cancer hospital, Sloan-Kettering, with $5 million in order to obtain access to its bank of cancer tissue biopsies, which could be useful as a source of genetic information.(11) An entire country has put its genome on the block. DeCode Genetics has gained the rights to investigate, store, and commercialize the genes of the entire population of Iceland. Not only have Icelanders been isolated for centuries, they have maintained excellent genealogical and medical records. It is easier to locate genetic mutations linked to diseases by testing an isolated, homogeneous population like the Icelanders' than by testing a more diverse population. A Swiss company has already paid $200 million to access the results of this research.(12) The value of human body tissue in the biotechnology age -- and the potential for profitable patents derived from it -- encourages doctors and researchers to think about people differently. Some scientists refer to the body as a "project" or "subject," a system that can be divided and dissected down to the molecular level. The language of science is increasingly permeated with the commercial language of supply and demand, contracts, exchange, and compensation. Body parts are extracted like a mineral, harvested like a crop, or mined like a resource. Tissue is procured -- a term more commonly used for land, goods, and prostitutes. Cells, embryos, and tissue are frozen, banked, placed in libraries or repositories, marketed, patented, bought, or sold. Umbilical cords, whose stem cells are useful for therapeutic purposes, are described as a "hot clinical property." The physician who patented John Moore's cell line apparently referred to his patient's body as a "gold mine."(13) Such language reflects a set of cultural assumptions about the body: that it can be understood in terms of its units, and that these units can be pulled from their context, isolated, and abstracted from real people who live in a particular time, at an actual location, in a given society.(14) The body has become commodified, reduced to an object, not a person. That the body has utilitarian value has long been recognized. Nineteenth-century philosopher Jeremy Bentham believed that corpses would be of greater use to society if they were studied or displayed rather than simply buried away. Preserved, exhibited, and studied, a corpse, he said, could serve "moral, political, honorific, dehonorific, money-saving, money-getting, commemorative, genealogical, architectural, theatrical, and phrenological" ends.(15) Following his instructions, Bentham's own body was preserved and placed on public display in a glass case at University College, London. Certainly the living body has long been exploited as a commercial and marketable entity, as athletes, models, prostitutes, surrogate mothers, and beauty queens are well aware. But there is something new, strange, and troubling about the traffic in body tissue, the banking of human cells, and the patenting of genes. In the 1984 congressional hearings concerning anatomical gifts, Albert Gore, then a U.S. congressman, was troubled by a growing tendency to treat the body as a commodity in a market economy: "It is against our system of values to buy and sell parts of human beings. . . . The notion has perhaps superficial attraction to some because we have learned that the market system will solve lots of problems if we just stand out of the way and let it work. It is very true. This ought to be an exception because you don't want to invest property rights in human beings. . . . It is wrong."(16) But what is troubling about the fragmentation and commodification of the body? What is the problem with the growing interest in human tissue? Why shouldn't body parts be economic units of trade? Clearly the business of bodies is driven by instrumental and commercial values; but so too, as Gore suggested, are most technological endeavors. Moreover, much of the body tissue that is useful for biotechnology innovation -- hair, blood, sperm -- is replenishable. The average person loses two hundred hairs each day. Blood and sperm are constantly regenerated. And body materials such as umbilical cord blood, infant foreskin, or biopsied tissue discarded after surgery are normally regarded as refuse, like bloodied bandages and other medical wastes. Why not, then, view the body as a useful and exploitable resource if these tissues can be used to advance scientific research, contribute to progress, or provide life-saving benefits to others? Why are developments in the removal, storage, and transformation of human tissue becoming controversial? Why are there lawsuits against the commercialization of cell lines and protests against the patenting of genes? The body is more than a utilitarian object: it is also a social, ritual, and metaphorical entity, and the only thing many people can really call their own.(17) Indeed, our bodies and body parts are layered with ideas, images, cultural meanings, and personal associations.(18) Definitions of the body that reduce and decontextualize it, are what allow scientists or biotechnology firms to extract, use, and patent body tissue without reference to the individual or consideration of his or her personal desires and social needs. Biotechnological uses risk running roughshod over social values and personal beliefs. The expanding use of human body materials poses basic and difficult dilemmas. The removal of body tissue contributes to scientific research, but it also intrudes on body boundaries, imposing on individual autonomy. Collecting samples for the expanding DNA identification systems may be an efficient means to combat crime, but it also increases the risk of a surveillance society. Storing tissue samples and extracting information from them provides a clinically useful database for health information, but using tissue without the consent of the people who provided it may violate their personal privacy. Often little thought is given to people, like Moore, who are the unwitting sources of this material. And while patenting genes encourages the venture capital necessary to support costly research, the possibility of gaining a patent can also encourage predatory behavior. Biologist Erwin Chargoff has warned that the growing ability of doctors and scientists to profit from patients' tissue can be a slippery slope to social disaster, "an Auschwitz in which valuable enzymes, hormones, and so on will be extracted instead of gold teeth."(19) The creation of commercial products from human tissue has raised questions of profit and property, of consent and control. Participants in a range of legal and social disputes over body parts are asking whether tissue and genes are the essence of an individual and a sacred part of the human inheritance -- or whether they are, as a director of Smith-Kline Beecham purportedly claimed, "the currency of the future."(20) Notes from Excerpt 1. Moore V. Regents of the University of California, 793 P.2d 479 (Cal. 1990). 2. John Vidal and John Carvel, "Lambs to the Gene Market," Guardian (London), November 12, 1994, 25. 3. Moore V. Regents of the University of California, 793 P.2d 479, 515 (1990) (J. Mosk, dissenting). 4. Craig Schneider, "An Ideal Medium for Growth of Biotechnology," Atlanta Journal, November 5; 1998, OIJH. See also http:Ilwww.busfac.coml 99_10_cover.cfrn. 5. Daniel B. Kevles, In the Name of Eugenics (New York: Knopf 1983). 6.Dorothy Nelkin and Lawrence Tancredi, Dangerous Diagnostics: The Social Power of Biological Information, 2d ed. (Chicago: University of Chicago Press, 1995). 7.Pam Belluck, "Everybody's Doing It: Paternity Testing for Fun and Profit," New York Times, August 3, 1997, sec. 4, p. 1; Matthew Campbell and Jack Grimston, "Paternity Tests Are Now Available by Post. But Will They Give Birth to More Unhappiness Than They Cure?" Sunday Times (London), July 19, 1998. 8. Richard Willing, "DNA and Daddy: Explosion of Technology Is Straining Family Ties," USA Today, July 29, 1999, p. Al. 9.National Bioethics Advisory Commission, "The Use of Human Biological Materials in Research: Ethical Issues and Policy Guidelines," December 3, 1998. 10. Meredith Wadman, "Privacy Bill Under Fire from Researchers," Nature 392 (March 5, 1998), 6. 11."Cancer Joint Venture Completed by Memorial Sloan-Kettering and Sequana," Business Wire, August 20,1996. 12. Robert Kunzig, "Blood of the Vikings," Discover 19 (1998), 90-99. 13. Testimony of John Moore to the Committee on Human Genome Diversity of the National Academy of Sciences, September 16, 1996. 14. Margaret Lock, Encounters with Aging (Berkeley: University of California Press, 1993), 370-71; see also Renee Fox, "Regulated Commercialism of Vital Organ Donation," Transplantation Proceedings 25(1993), 55-57. 15. Jeremy Bentham, quoted in Harvey Rachlin, Lucy's Bones, Sacred Stones, and Einstein's Brain: The Remarkable Stories Behind the Great Objects and Artifacts of History, from Antiquity to the Modem Era (New York: Henry Holt & Co., 1996), 205. 16. House Committee on Energy and Commerce, Subcommittee on Health and the Environment, Hearing on H.R. 4080, National Organ Transplant Act,"98th cong.(1984), 128. 17. Leonard Barkan, "Cosmos and Damian: Of Medicine, Miracles, and the Economics of the Body," in Stuart Younger, Renee Fox, and Lawrence O'Connell, eds., Organ Transplantation: Meanings and Realities (Madison: University of Wisconsin Press, 1977), 242, 246. 18. Anthony Synnott, The Body Social (London: Routledge, 1993). 19. Quoted in Andrew Kimbrell, The Human Body Shop: The Engineering and Marketing of Life (New York: HarperCollins, 1993), 284. 20. George Monbiot, "A Corporate Great Blob Coalesces," Guardian (London), January 20, 2000. Excerpted from Body Bazaar: The Market for Human Tissue in the Biotechnology Age by Lori B. Andrews, Dorothy Nelkin All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.

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