|
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 by Lori Andrews and Dorothy Nelkin. Copyright
2001 by Lori Andrews and Dorothy Nelkin. Excerpted by permission of Crown,
a division of Random House, Inc. All rights reserved. No part of this
excerpt may be reproduced or reprinted without permission in writing from
the publisher.
|
Top