From Amazon
Can a human being be reduced to the sum of his or her body's parts? In a curious turnaround, science and industry are making the case that our selves are separate from and even the owners of our flesh and bone, rather than the meat machines 20th-century biologists posited. That this reversal is to their advantage and profit is the theme of Body Bazaar: The Market for Human Tissue in the Biotechnology Age.
Authors Lori B. Andrews and Dorothy Nelkin, each intimately involved in the struggle to define the laws and issues of the biotech age, make a strong and clear case against the newfound rights of business interests to harvest our bodies and derive exclusive profit from the resulting products and processes. Though some of their arguments are unconvincing--while it is certainly true that many cultures hold blood and other tissues sacred or at least taboo, such beliefs would seem to pale before, say, a cure for cancer--on the whole, the reader is left with a sense of urgency that harm is being done to an unsuspecting population of health care consumers unknowingly mined for new biological properties and to humanity itself, rightly expecting the same selflessness from the medical community that eradicated smallpox and smashed polio with little to no profit for the principals. Using stories of individuals injured or abused by the increasingly rapacious biotech industry and their own careful analysis of the changing intellectual property laws governing the mess, the authors warn of a dehumanized world unimaginable even a few decades ago. Whether we'll avoid the pitfalls of our new tech or simply cope with the results is a question for history. --Rob Lightner
From Booklist
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
Copyright © American Library Association. All rights reserved
Copyright © American Library Association. All rights reserved
Book Description
In the age of biotechnology, the body is speaking to us in new ways. Our DNA, blood, and bones — our very being! — have acquired currency in an exceedingly bizarre fashion that we could not have imagined even a decade ago. Valued as both a source of information and the raw material for commercial products, the tissues in a single human being can now attract millions of dollars, and with them new commercial uses for human blood and body tissue. Because of this, the risks --we face both individually and as a society --are massive and should be understood by everyone.
Body parts are useful to researchers and entrepreneurs, insurers and employers, law-enforcement authorities and immigration officials. And they are more easily available than most people suspect. Nearly all of us have blood and tissue on file. Whenever you have a blood test, a biopsy, or surgery, that tissue is potentially available without your consent. Genetic testing is mandatory in many contexts, and our DNA may become our primary identification --the social security number of the future.
Human tissue is crucial to health care, but it has also become a medium for artists who have found ways to sculpt in blood and to plastinate skin. Interior decorators buy human skulls in body boutiques. DNA can even be used to run computers, since its replications provide more memory than the binary code. As the body market expands, people have been dismayed to discover that their eggs have been given to other women without their consent and that scientists and biotech companies are making huge profits by secretly patenting their cell lines and genes.
Andrews and Nelkin illuminate the business of bodies, telling individual stories to show the profound psychological, social, and financial impacts of the commercialization of human tissue. They explore the problems of privacy and social control that arise with the extraction of information from the body, and the provocative questions of profit and property that follow the creation of marketable products from human bodies.
Their findings are shocking, groundbreaking revealing the existence of a $17 billion body business in a true story that reads like science fiction.
Body parts are useful to researchers and entrepreneurs, insurers and employers, law-enforcement authorities and immigration officials. And they are more easily available than most people suspect. Nearly all of us have blood and tissue on file. Whenever you have a blood test, a biopsy, or surgery, that tissue is potentially available without your consent. Genetic testing is mandatory in many contexts, and our DNA may become our primary identification --the social security number of the future.
Human tissue is crucial to health care, but it has also become a medium for artists who have found ways to sculpt in blood and to plastinate skin. Interior decorators buy human skulls in body boutiques. DNA can even be used to run computers, since its replications provide more memory than the binary code. As the body market expands, people have been dismayed to discover that their eggs have been given to other women without their consent and that scientists and biotech companies are making huge profits by secretly patenting their cell lines and genes.
Andrews and Nelkin illuminate the business of bodies, telling individual stories to show the profound psychological, social, and financial impacts of the commercialization of human tissue. They explore the problems of privacy and social control that arise with the extraction of information from the body, and the provocative questions of profit and property that follow the creation of marketable products from human bodies.
Their findings are shocking, groundbreaking revealing the existence of a $17 billion body business in a true story that reads like science fiction.
About the Author
Lori Andrews is the director of the Institute for Science, Law and Technology at the Illinois Institute of Technology and professor of law, Chicago-Kent College of Law. She has been an adviser on biotechnology to Congress, the World Health Organization, and the National Institutes of Health, as well as foreign governments. Ms. Andrews is the author of The Clone Age.
Dorothy Nelkin is the author of many books, including The DNA Mystique, Dangerous Diagnostics, and Selling Science. Her articles appear in both academic publications and the popular media. She holds a university professorship at New York University and is a member of the National Academy of Sciences’ Institute of Medicine. She has served on commissions at the National Institutes of Health, the Department of Justice, and the Institute of Medicine.
Dorothy Nelkin is the author of many books, including The DNA Mystique, Dangerous Diagnostics, and Selling Science. Her articles appear in both academic publications and the popular media. She holds a university professorship at New York University and is a member of the National Academy of Sciences’ Institute of Medicine. She has served on commissions at the National Institutes of Health, the Department of Justice, and the Institute of Medicine.
Excerpt. © Reprinted by permission. All rights reserved.
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 profita...
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 profita...
