Who Owns Your Body?
Review by Rick Weiss
Lori Andrews and Dorothy Nelkin uncover some disturbing
It seems that scientists have been struggling forever to make a mechanical heart that really works. Or a trouble-free hearing aid. Or a prosthetic hand that's half as good as the real thing. From wooden legs to silicone breasts, the history of human corporeal reengineering has largely been one of clumsiness and frustration, despite relentless innovation.
But what if we could take a tip from nature and grow the things we cannot build? Imagine little slabs of cardiac muscle cultivated in a dish, ready to be sewn over your aging heart. Homegrown blood vessels that naturally bypass clogged arteries. Medicines that work perfectly because they are made by your own cells. Imagine hair that sprouts in skeins from once withered follicles. Or being able to grow, as advertised, those perfect pecs and abs. The dream of harnessing biology's regenerative powers for curative, life-extending and even cosmetic purposes has begun to become a reality, write Lori Andrews and Dorothy Nelkin in Body Bazaar: The Market for Human Tissue in the Biotechnology Age. But, the authors warn, this new and promising era has a dark side. People's tissues, cells and genes are increasingly being perceived as natural resources to be harvested and transformed into value-added commodities. And the economy that has evolved around this burgeoning industry threatens to wreak ethical havoc.
"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," the authors write in this fascinating if somewhat polemical overview of the new millennium's hottest biological frontier. "When commercial interests and the quest for profits are a driving force, questions of human safety and respect for the human sources of tissue--the person in the body--take second place."
Let's set aside for a moment the oft-overlooked truth about biotech medicine: that despite all the hoopla surrounding recent advances, including the sequencing of the human genome, it's probably not going to be all that easy to wrest control of Mother Nature's biomolecular operating system to cure inherited diseases and grow replacement parts. Still, vaccines and pharmaceuticals are increasingly being produced with the help of human cells and genes. And DNA is making itself more and more at home in law-enforcement, employment and insurance decisions. As Andrews and Nelkin convincingly point out, even these first steps have already led to some worrisome legal and ethical precedents.
Consider the case of John Moore, who in the 1980s was being treated by a Los Angeles specialist for hairy-cell leukemia. Unbeknownst to Moore, his doctor had discovered in the businessman's spleen cells a natural compound that appeared to have great therapeutic potential. When Moore learned that his doctor had taken out a patent on his cells and had sold the commercial rights to a biotechnology company for millions of dollars, he sued for property theft. But in a landmark 1990 decision, the California Supreme Court ruled 5 to 4 that Moore did not have a property interest in his body parts. Thus, the stage was set for what the biotechnology industry now sees as a crucial right of access to human tissues and what critics like Andrews and Nelkin see as an invitation to wholesale biocolonialism and human exploitation.
Andrews, a legal scholar and bioethicist at the Illinois Institute of Technology, and Nelkin, a New York University professor of law, offer a rogues' gallery of other examples in which people's rights appear to have been trampled or the sanctity of life diminished by gene-hunting bioprospectors and profiteers.
Meet Daniel and Debbie Greenberg, who transformed the deaths of their son and daughter from Canavan disease into a biomedical blessing. They initiated a research program that led to the discovery of that disease's causative gene--only to learn that the university that co-sponsored the research had quickly patented the gene and made it unavailable or unaffordable to researchers who wanted to use it to help parents and patients.
Meet the helpful but perhaps naive citizens of the South Atlantic island of Tristan da Cunha, who, after giving "informed consent" that may have been tainted by language barriers and cultural differences, donated their blood to scientists developing gene-based medicines that the poor volunteers were unlikely ever to afford.
Then there is the sad story of Susan Sutton, whose parents tried to make sense of her suicide by granting permission for her heart, liver, cornea, bones and skin to be used for transplantation. Only later did they discover that although they could not even afford a headstone for their daughter's grave, others had made tens of thousands of dollars brokering the distribution of her body parts.
What are we to make, Andrews and Nelkin ask, of a legal system that stores people's DNA profiles in huge databases without adequate assurance that the information will not be abused? A national transplantation system that precludes buying and selling organs yet allows middlemen to skim profits from their priceless trade? A medical system that (in many states) rules out payments for surrogate mothers but allows women to sell their gene-screened eggs to fertility clinics for thousands of dollars?
Body Bazaar offers compelling evidence that federal regulators and the courts are lagging in their patchwork efforts to deal with biotechnology's entrepreneurial push. Yet although the authors thoroughly document the scope of the problem, they lose some credibility through their unwillingness to acknowledge that many of these quandaries have two sides and by failing to offer more creative solutions.
They seem unwilling to concede, for example, that patents on at least some living things are most assuredly here to stay. The biotechnology industry has little incentive to create the cures that people want if it has no hope of profiting from its efforts. And the authors are right to raise an eyebrow about a company that, instead of cleaning up the workplace, turns away applicants whose genes put them at risk of toxic chemicals. But they ignore the more difficult underlying question of whether it's preferable to set environmental protection standards so high as to protect even those whose rare genetic makeups leave them unusually sensitive to certain substances.
One wishes that the last chapter, which seeks to answer the question of how to sequester our warm bodies from the cold-hearted bazaar, were longer than seven pages. Nevertheless, at a time when even science-savvy readers may be only vaguely aware of the biological gold rush now under way around the world, Body Bazaar does a great service by collecting in very readable form a comprehensive overview of the trend. It offers a prescient look at how our culture is likely to struggle and change as our craving for better and longer lives and more effective law enforcement comes up against long-standing economic, scientific, cultural and even spiritual traditions regarding the body.
Today, 10,000 years after human beings learned to farm the land for food, we are learning how to farm our own bodies for biological products. For the first time ever, our very bodies may be worth more in the marketplace than the products produced by those bodies in a lifetime of agricultural or factory work.
As Body Bazaar makes so frighteningly clear, it may be a long time before we--the farmers and the farmed--adjust to that peculiar economic reality.
RICK WEISS, a science and medicine reporter at the Washington Post, has written extensively about genetics and biotechnology.