BODY BAZAAR - The Market for Human Tissue in the Biotechnology Age by Lori Andrews and Dorothy Nelkin, Crown Publishers, division and trademark of Random House, Inc, New York, © 2001, ISBN: 0-609-60540-2, 245 pp, $24.
Review by Del Meyer, MD
Today, debate over harvesting and donating blood tissue seems remote when permission to harvest and donate corneal tissue and virtually every organ is given on the back of one’s drivers’ licenses. The reason is apparent. If we’re involved in an accident and survival is unlikely, permission is already given to harvest organs in order to extend the life of someone else. There is a federal law to prevent payment for organs, but it applies only to interstate commerce. Hence, an organ donated and transplanted in the same state would be exempt. Many states do allow for payment. However, there is always a processing fee that many times exceeds the payment allowed for the organ. The purported need for organs has far outstripped the supply of donars. As one would expect, this disparity in supply and demand, creates a black market.
Several years ago, Scientific American highlighted this topic by publishing a photograph of illiterate south Asians with the same flank incision. All had allegedly donated a kidney without knowledge of their operation. This black market gave enterprising physician writers grist for shocking novels. Robin Cook, MD, wrote Chromosome 6 in which human DNA is inserted into the chromosome of bonobos producing chimeras with organs transplantable into human beings. This meddling leads to unexpected fallout in the humans recipients of the organs, and creates behavioral disturbances in the primates. Unexpected complications continue to surface, such as finding West Nile virus in three of four recipients of multiple organ transplants. Tess Gerritsen, MD, wrote Harvest, in which the Russian Mafia purchases/kidnaps children and adolescents, types their tissues, then demands a ransom from matching recipients. The organs are harvested on a hospital ship, then taken by helicopter to eager recipients. The corpses are fed to the sharks.
With the cloning of mammals in recent years, there was great impetus to apply this process to humans. Many scientists and attorneys felt that this was a way to produce designer offspring with fewer surprises than in-vitro fertilization. As the problems of cloning and its adverse effects became public, there was a growing aversion to human cloning on many levels, including personal, social, moral, ethical and scientific. As frequently occurs, proponents found a way around the opposition: cloning was simply repackaged as tissue-specific stem-cell research.
In an interview, internationally renowned bioethicist Lori B Andrews details a telephone conversation with a scientist who claimed, "I have a severed head here. This man wrote in his will that he wanted his head kept and reattached to a healthy body. What are the legal rights of the severed head?" Andrews, a Chicago-Kent College of Law professor says, "I’m the cleanup person that people call after they do some new weird thing." She is also an adviser to Congress, the World Health Organization (WHO) and the National Institutes of Health (NIH). She has litigated for parents who wanted to ship a frozen embryo across the country, yet decries the practice of securing sperm from men in coma.
Andrews and coauthor Dorothy Nelkin, a law professor at New York University, detail how our human bodies, with an elemental worth of less than one dollar, have acquired currency in today’s world. DNA, blood, bones, and other tissues have become the raw material for commercial products that attract millions of dollars. Our bodies have also become sources of information easily available for researchers, entrepreneurs, insurers, employers, law-enforcement authorities and immigration officials. The authors cite evidence that this burgeoning industry threatens to wreak ethical havoc.
The human body, formerly considered private, personal, and the only thing that people could really call their own, has begun to take second place to human commerce. Medical centers have harvested rare cell types, patented them, and made a fortune. Yet, none of the centers have shared the profit with the ailing donor.
Andrews and Nelkin cover ten major topics ranging from celebrity organs to body snatching and sequestering. Some have appeared as articles in the New England Journal of Medicine. Each chapter reads like fiction, but is followed by more than 50 pages of carefully annotated notes that form the scientific basis of this carefully detailed ethical dilemma of the twenty-first century.
In the Prologue, we are introduced to a businessman who develops hairy cell leukemia. After being treated, he returns on a regular basis over the course of seven years only to find that he has been unknowingly donating unique blood chemicals for a venture capital investment. He sues the doctors for malpractice and property theft. However, the Supreme Court rules against him on the grounds that informed consent for the surgical procedure had been given and that he did not have a property interest in his body parts; therefore, the profits belong to the doctor and the biotechnology company. .
In Chapter One, the authors discuss seven instances of celebrity research, from Einstein’s brain to Silkwood’s bones. They consider this to be celebrity pathology, the medical equivalent of tabloid journalism. Similarly Karen Ann Quinlan’s brain and Hubert Humphrey’s cancerous bladder were the focus of studies published in the New England Journal of Medicine.
In Chapter Two, the authors describe six patients who have benefitted from donated tissues. Some of the stories begin to highlight some ethical dilemmas. Secular groups are vaguely uncomfortable about patenting the body, but moral reservations are being voiced more frequently. The Boston-based Council for Responsible Genetics declares that the commercialization of life materials violates the sanctity of human, animal and plant life. The religious groups are more explicit and are troubled about the reduction of life to its commercial value and marketability.
The ruthlessness of the biocommerce is best described in Chapter Four by the misuse of the asthmatic Tristanians who were used as research subjects. They donated blood samples that were later analyzed for asthmatic genes that were identified and patented. The Tristanians received no rights to, or profits from, their own natural resource – their genes.
Chapter Nine details the current version of the nineteenth century body snatching into modern Biocrime. One story tells of a woman who took fertility drugs and produced multiple eggs. Without her knowledge or consent, some of her eggs were successfully implanted in another woman who was duped into thinking they were from a consenting donor.
The blackish market of harvesting eggs from college girls is sometimes lucrative enough to pay tuition. One of my colleagues has a daughter at USC who was offered $5,000 for her eggs. She declined, not liking the idea of having scattered offspring, with the outside chance that a future offspring could inadvertently marry a sibling. She tells of classmates with special characteristics who were offered as much as $25,000 for an egg harvest. Sperm is reportedly going for $100 to $4,000. Cell lines are now fetching up to $3 million and genes up to $1.5 billion.
This book provides a scientific view of this ethical dilemma of the twenty-first century. As to the authors question, "Who owns your body," the answer is that in this biotechnology age, you, the patient, don’t. So be careful when you fill out the organ donor card that came with your driver’s license or when you donate blood, or when you think you want to receive an organ which may not significantly improve your quality of life. You might want to think again. Every time we donate blood or give blood for tests, we become a mine shaft with a rich vein of gold running through it. The ethical implications are vast.
When the courts rule against people controlling their own body, patients will protect themselves in other ways. More patients have taken the organ donor card off their driver’s license. They no longer ask to go to University Medical Centers. Many are resisting going to the local hospitals. An intelligently professional lady recently started developing nodules over her body. Over a period of three months, she became short of breath as she took various herbs and alternative medications. When she felt she was suffocating, she went to an emergency room where she promptly went into cardiac arrest. Her pericardial effusion from metastatic sarcoma was drained as she was resuscitated.
Andrews and Nelkin have elucidated the ethical dilemma so that the pendulum can swing again to a more appropriate position.