Who owns your body parts? Everyone's making money in the market for body tissue--except the donors.
Cooke had died on March 30, 2004, the victim of a cancer that spread from lung to bone. He left behind a 95-year-old disease-ridden corpse. Susan Kittredge, Cooke's daughter, was mindful only of the potentially exorbitant funerary expenses and flipped through the yellow pages in search of a good price. She eventually settled on a funeral home with a $595 cremation fee.
The home, East Harlem's New York Mortuary Service, promised Kittredge a box of ashes but said nothing of its bigger plans for her father, who would not make it to the cremator whole. For a fee, the funeral director gave a New Jersey tissue procurement agency access to Cooke's remains. His bones, worth some $7,000, were prepped for resale, and his records were falsified to alter his age and cause of death. Three days later, as promised, Susan received a cardboard box of ashes by mail.
Alistair Cooke's remains were only the most famous of more than a thousand bodies plundered by Michael Mastromarino, owner of Biomedical Tissue Services (BTS). He had a simple business model: Pay funeral directors for access to bodies and resell bones, heart valves, spines, and other tissues to biotech firms in need of spare parts.
A former dental surgeon, Mastromarino was familiar with the biotech industry and its rising demand for transplantable tissue. While he was a legitimate practitioner, he had co-authored a book about the benefits of replacing old with new, buoyantly tided Smile: How Dental Implants Can Transform Your Life. He stopped transforming lives through maxillofacial surgery six years ago, when his predilection for self-medication led to trouble. He botched a surgery, and the patient charged that he was stoned on Demerol as he did so. He lost the trust of his patients, and then he lost his license. BTS was an attempt at fiscal redemption, and it proved very lucrative.
As the scandal unraveled in 2005, prosecutors revealed that Mastromarino had netted $4.6 million in three years of back-room dissections. He paid undertakers $1,000 a pop for providing access to the dead, paid cutters $300 to $500 for extracting the most marketable parts, and, according to his lawyer, managed to take home up to $7,000 per body. (One of Mastromarino's former employees contends the boss was pulling in double that.) The New York Police Department later interviewed the families of 1,077 people whose bodies were raided for spines, bones, tendons, and other tissues. BTS had cut deals with funeral homes in New York City, Rochester, Philadelphia, and New Jersey.
The company's work was amateurish at best, dangerous at worst. For families who planned an open-casket funeral, BTS cutters would patch up gutted corpses as best they could. Investigators later found legs stuffed with plastic piping of the kind found at hardware stores. An employee said that he had used roils of socks to the same purpose, and police found surgical gloves sewn up inside hastily repaired remains.
Cooke's bones were sold to Regeneration Technologies, one of the country's largest tissue banks. The company says Cooke's bones were deemed unsuitable for implantation, but it can't say the same for other pieces of tissue it bought from Mastromarino. The tissues BTS distributed ended up everywhere from a woman's neck in Kentucky to a man's jaw in Tampa Bay. Hundreds of people wake up every morning knowing that they are partly composed of stolen body parts.
In February 2005, Mastromarino and three others were indicted on 122 charges, including body stealing and opening graves. The grisly story received perhaps more media attention than any such scandal since a wave of body snatching in the 18th century. A February 2006 Paula Zahn Now segment spun the story into the perfect media narrative, complete with a villain, a celebrity, and a whistleblower. But that telling, and many others, failed to point out that much of Mastromarino's basic business model was perfectly legal, common, and necessary to the biotech industry. If Mastromarino had been smarter, he could have made a fortune off body parts while staying well within the limits of the law.
Consider the massive market in which Mastromarino played but a tiny role. Demand for human tissue has never been higher, and human remains have never been more valuable. According to the American Association of Tissue Banks, doctors perform more than I million tissue transplants each year, using everything from secondhand ligaments to hand-me-down heart valves. That fuels a thriving industry composed of tissue banks, biotech firms, and middlemen. Each year the industry takes in an estimated $1 billion in revenue, not a cent of which will go to the families or heirs of the donors who provide the raw material.
As the Cooke scandal deepened in early 2006, the Association of American Tissue Banks sent its members a set of talking points, almost all of which emphasized the outlier status of Mastromarino's operation. There are important differences between BTS and legal banks, the association emphasized. Most crucially, Mastromarino never sought the consent of donor families before harvesting the tissue of their relatives. He conspired with funeral directors, lied about the quality of the tissue, and put transplant recipients in danger. "What these folks are alleged to have done violates everything we stand for and everything we are trying to do," says Robert Rigney, CEO of the association.
Yet a small but growing number of academics, doctors, and legislators believe the Cooke scandal wasn't an aberration but an inevitability. They believe the tissue industry as a whole, even as it strives to distance itself from Mastromarino, is abusing families on a scale well beyond the reach of any one body broker. "The industry will argue that these are aberrant, isolated events that are irrelevant" says Todd Olson, a professor of anatomy and structural biology at the Albert Einstein School of Medicine. "My view is it's exactly the opposite. What we're really dealing with here is the tip of the iceberg."
Olson believes that the generosity of donors is being abused on an "epic scale" by tissue procurement organizations, middlemen, and biotech companies that depend on tissue for their survival. With scientific advances there has emerged an enormously beneficial market in remains. But the players most fundamental to that market, donors, are locked out, prohibited by law from sharing in the benefits that others derive from their bodies. At the heart of this inequity is a confusion over to what extent we control our own persons--over whether we own our increasingly valuable component parts.
Resting in Pieces
Mastromarino found several buyers for his cadaveric contraband, among them a highly profitable biotech firm known as LifeCell. The New Jersey-based corporation ranked 16 on Fortune's list of fastest growing businesses in 2006, and with good reason: Its stock shot up 28 percent that year. The company owes much of the success to its flagship skin graft, AlloDerm.
"AlloDerm is a miraculous substance,' says Maryland plastic surgeon Mark Richards, "given its universal acceptance into the human body." Doctors have found that human bodies are far less likely to reject AlloDerm than previous skin substitutes. The graft melts into human flesh because it is derived from human flesh, the stripped-down product of bodies pulled apart after death.
Surgeons use AlloDerm for all manner of life-enhancing procedures, from reconstructive breast surgery to hernia repair, as well as some perhaps less urgent operations. AlloDerm injections are a leading method of lip enhancement, an increasingly popular procedure among women. And the miracle substance is not without cosmetic benefit for men. "Some surgeons promote its use and employ it regularly for penis enlargement." says Stephen Giunta, a Virginia surgeon specializing in phalloplasty, "even though the manufacturer advises them not to do so."
AlloDerm is but one of many products that rely on donated bodies for their manufacture. Another New Jersey company, Osteotech, processes donated bone into a putty surgeons use to patch small breaks. The publicly traded firm also sells demineralized bone as "dental dust," a product that accelerates healing after tooth extractions. DePuy Spine, a subsidiary of Johnson & Johnson, crafts raw tissue into specialized bio-implants for spinal surgery. The list of life-giving new technologies is long and growing.
Where bodies aren't mined for raw material, they're treasured for research. The military buys cadavers to test explosive devices. Medical device companies buy them to test surgical equipment. Surgeons buy them to learn to use the same.
Tissue transplants range from the critical to the seemingly frivolous, but the industry's impact is clearly positive. The thriving market in tissue has enhanced the lives of millions of recipients, and it is a font of new products that will improve the lives of millions more. Tissue transplants can give sight to the blind and mobility to the bed-ridden. Before such operations were routine, limbs with cancerous bones would have to be amputated; now they can be replaced.
Law and custom both prohibit the sale of cadaveric tissue, a ban heartily supported by bioethicists like Arthur Caplan, the influential director of the University of Pennsylvania's Center for Bioethics. The prohibitionists warn of the degradation and commodification of human beings, but scientific progress has blurred the line between tissue and commodity. Doctors need a constant stream of remains to perform--and profit from--their work. The current compromise treats the body as property once it's in the hands of a corporation but as a "priceless" gift as it passes from a donor's family into the marketplace.
"We have a schizophrenic system," explains Lori Andrews, a professor of law at Chicago-Kent College of Law who specializes in the legal implications of biotechnologies. Tissues, she says, "are being treated as property by the researchers and doctors secretly, and patients don't even realize that they have monetary value."
Current law proscribes the compensation of donors, ostensibly for their protection. But it also allows virtually anyone else to buy and sell tissue. Publicly traded companies are pumping out treatments that use the remnants of the dead to cure the bodies of the living; the preservation of life requires the commodification of death. "Bodies are in this stream of commerce, and that's not ultimately a bad thing," says Michele Goodwin, director of the Health Law Institute at DePaul University and author of the 2006 book Black Markets: The Supply and Demand of Body Parts. "But it's set up in such a way where only companies, brokers, and middlepersons receive compensation, and family members don't. It's an underhanded way of dealing with the public."
The Invisible Hand
The legal value of a human body, dead or alive, is zero dollars. "Under old English common law the body had no value at all," explains Ronn Wade, head anatomist for the state of Maryland. "Today if you look at not just transplantable tissue but the demand for body parts for medical research and training, and what the market will pay, the body certainly is valuable." The actual value of the body varies widely. A Brooklyn district attorney prosecuting the Mastromarino case says a single corpse can fetch $250,000, though most estimates are closer to a mere $100,000. One corpse can help heal fro different people in the same number of countries; a tendon might be sent to Australia, a heart valve to India. Bones, skin, spines--all of it is worth something to someone.
The market is thriving and global demand has soared, but almost no one will cop to buying and selling body parts. The 1984 National Organ Transplantation Act outlaws the transfer of "any human organ for valuable consideration" for use in transplantation, a proscription generally taken to include tissues as well as organs. But the law does allow for "reasonable payments associated with the removal, transportation, implantation, processing, preservation, quality control, and storage of a human organ." Thus the tissue industry runs on what it deems to be "reasonable" terms. Those who strip skin for sales are "procurers," not vendors; their customers are "processors," not buyers. Tissues are not sold for prices based on demand but processed for a "reasonable price."
The first rule of the tissue market, in other words, is don't talk about the tissue market. Patients would be far worse off if the trade in tissue were stanched, goes this line of thinking. The supply of life-enhancing materials would become as scarce as organs are now, creating shortages and jacking up prices. But to admit that the market exists, that profits are being made, is to risk violating the law and the social norms from which it springs.
Some donors have found ways to play along and make a buck, engaging the language of donation even as they exact payment. Ova donors, for instance, can be "compensated" for their time at virtually any price the market will bear. (See "Ova for Sale," October.) Blood banks pay for plasma, sperm banks for semen. By contrast, the kin of deceased donors are never compensated, and they probably don't even know that their relatives' tissue will be sold.
Organs, unlike tissues, are not generally sold for profit, and the current donation regime suffers from severe and deadly shortages. In 1986 the Uniform Anatomical Gift Act imposed a highly regulated system for managing organ donation. Kidneys, hearts, and lungs are tracked, waiting lists maintained. But supply is scarce, largely because the circumstances in which organ donation occurs are so limited. Organ donors must be young and healthy; typically they die of a catastrophic event such as a motorcycle crash. The government has also designated a single designated procurement organization for every locality. If you die at home and donate, the government knows exactly what organization gets to take your organs.
Tissue donation, by contrast, is lightly regulated and totally unmapped. The government never designated organizations for each area, and a variety of organizations compete for available bodies. Almost anyone of any age can be a tissue donor, and tissue never enters the tightly controlled, heavily regulated system of organ distribution. This relative freedom has huge advantages for burn victims and other patients who benefit from donor tissue, but it has upset established procurement organizations that, for the first time, have to compete for parts.
In the Washington, D.C., area, the local organ procurement organization--the nonprofit with a monopoly on organs--also procures tissue. Hospitals notify the Washington Regional Transplant Consortium (WRTC) when someone is nearing death, and the nonprofit sends out family counselors to discuss donation with the next of kin. If consent is granted, WRTC sends a tissue recovery team to the hospital.
Where does the recovered tissue end up? According to Cindy Speas, WRTC's director of community affairs, the organization is "not involved in any way with anything that is not a not-for-profit." And it's true that the consortium doesn't send tissue directly to corporations. Instead, WRTC provides tissue to LifeNet, another nonprofit, whose mission is to "improve the quality of human life" and "serve the community." LifeNet posted $107 million in revenues in 2004 for "tissue/organ procurement, processing fees, and reimbursements."
From LifeNet, the tissue enters the for-profit system. LifeNet has contracted with LifeCell, the company that makes AlloDerm, along with other "alliance partners" such as Osteotech, the firm that makes bone putty. Standard and Poor's lists LifeCell's value at $888 million. From there, tissue can end up as replacement skin for a young burn victim or cosmetic filler for a thin-lipped socialite.
LifeNet is not alone in serving as the nonprofit face of a massive for-profit industry. The Musculoskeletal Transplant Foundation is the world's largest tissue bank. Osteotech founded the bank to supply it with tissue in 1987. Osteotech and the bank are now separate entities, both pulling in a lot of cash. The Musculoskeletal Transplant Foundation reported more than $242 million in revenue in 2004.
Six years ago, two journalists at The Orange County Register undertook the most extensive investigation to date of the legal tissue trade. They linked 59 nonprofit tissue procurement agencies with publicly traded, for-profit firms. They also called each agency for comment, and the recorded answers are a jaw-dropping chronicle of deception and arrogance. The director of the nonprofit California Transplant Donor Network, which at the time was selling bone to Osteotech, admonished the Register, "It is not legal to sell organs and tissue." Others explained that families could not comprehend the distinction between nonprofit and for-profit. A spokesperson for the University of Miami Organ Procurement Agency, which sells skin and bone to the biotech company CryoLife, explained, "We can't be educating donors at the bedside."
Organizations like WRTC are among the most virulent critics of shady operators like Mastromarino. They want higher barriers to entry for brokers: a stronger Uniform Anatomical Gift Act, a more heavily funded Food and Drug Administration with more stringent requirements. Ideally for them, the government would designate one tissue procurement agency per area, as it has done with organs, and leave the big players with monopolies. "The FDA has very stringent requirements for tissue banking," says WRTC's Speas, "but they have not yet gotten the strictest requirements for tissue recovery agencies. Which is why we're seehag these mavericks out there."
Above all, such organizations emphasize the fact that they are nonprofit, blazoning their tax status as incontrovertible evidence of ethical purity. Within the tissue business, these distinctions seem to hold little import. One industry expert, who wishes to remain anonymous because he is still heavily involved in tissue procurement, points out that employees of the nonprofit tissue banks generally make more money than those working at for-profit banks. Nonprofits simply turn earnings into salaries. '"The companies are all run very similarly," Raj Denhoy, a medical device analyst with Piper Jeffrey & Co., told the Associated Press in November. "It isn't as if the people in these companies aren't making a good living."
Selling the Gift of Life
Alistair Cooke never agreed to donate his body, but most tissues in the system come from people who wanted their remains to be reused. Hospitals, hospices, and nursing homes have agreements with tissue procurement organizations, inviting them to contact the next of kin as a potential donor nears death.
About 30,000 Americans donated tissue in 2005, and the number rises every year. Anecdotal evidence suggests that most of their families have no idea their tissue will be bought and sold. "There is a disincentive in alerting the families as to what might happen," says Goodwin, the DePaul University law professor, "because the families might--I think would--oppose their family members' ending up in the stream of commerce."
A 2001 report from the Department of Health and Human Services found that "tissue banking and processing practices have gradually diverged from donor families' expectations." Tissue banks have argued that grieving families are too fragile for hard-nosed talk about the marketplace, and no federal law requires tissue procurement organizations to tell donors that their loved ones may end up in a phalloplasty. The United Anatomical Gift Act includes stringent informed consent standards for organs but is silent on the matter of tissue.
Andrews, the biotech expert at Chicago-Kent College of Law, says a nonprofit has asked her for legal advice on the extent to which it must inform donor families that tissue will be sold for profit. "The nonprofit tissue bank said, 'We don't want to mention [profits] because we're afraid people won't donate,'" she recalls. "But a key provision of informed consent is that you've got to tell people what's material to them. And if the tissue retrieval services think this is material, that people would do something different if they knew, then of course they have to tell them. But oftentimes they don't."
Donor recruitment agencies are famously aggressive, a phenomenon long observed in organ procurement. As with organ donation, organizations can spend days coaxing a family into consenting. This process is probably best described by the University of Arizona sociologist Kieran Healy, who writes that we can think of procurement professionals as having industrialized altruism by turning it into a "resource-extraction problem." The marketing tactics are as rich as anything Jessica Mitford cataloged in her biting expose of the funeral industry, The American Way of Death, four decades ago.
Tissue banks must recruit donors and avoid scaring away valuable, life-enhancing future parts; they need to give donors an account of what it means to donate. Widely reported stories like the Alistair Cooke debacle threaten to lower the pool of donors, so agencies have responded with media outreach. Like never before, organizations need to reassert control over the cultural narrative of donation. In large part, that has meant taking control of the language, turning the lexicon of scandal into the preferred patois of altruism. "I'd adore it if you'd look at the language we like to use," pleads Speas of the WRTC. "We don't like to use the word harvest."
The language WRTC would like journalists to use is compiled in a "reporter's guide" available on the organization's website, a compact manual of right and wrong words for journalists. The offending harvest has a line through it; the consortium suggests recovery. Retrieval is similarly verboten, as are cadaveric and brain death. The preferred terms are described as "the correct media terminology," as if they've been deemed acceptable by some centralized bureau of semantic and reportorial accuracy.
This is framing, and donor procurement agencies are well-versed in the art. "How much will it cost my family to donate my tissue and organs?" reads a question from a FAQ on the website of Community Tissue Services, an Ohio-based nonprofit. "There is no cost," reads the reply, as if the organization were offering a valuable service at bargain rates.
At times, the language of donation and the language of medicine are just a mouse click away. Take LifeNet, the Virginia nonprofit--not to be confused with LifeBanc of Ohio, LifeGift of Texas, LifeSource of Minnesota, or LifeLink of Florida. LifeNet runs two sites in two disparate languages, one donor-friendly and one doctor-friendly. Accesslifenet. org is for customers looking to buy, not families looking to give. The site stresses quality control, the engineering process, and service. "LifeNet's processing facilities" it explains, "are state of the art and have been designed to minimize the risk of cross-contamination. They meet stringent regulatory, industry, and ISO standards. LifeNet's allograft tissues undergo extensive development to ensure that the products meet the surgeon's needs and preferences." Images of white-coated doctors confer an air of clinical legitimacy, just above a note that customer service representatives are available "24 hours a day, 365 days a year."
LifeNet's "Donor Family Services Department" runs a very different site, healingthespirit.org, with a stated mission to "promote healing and peace for organ and tissue donor families." The site's main image shows dappled light pouring through a canopy of trees, the font of choice is a feminized cursive, and the sound of running water loops endlessly in the background.
The Barnard anthropologist Lesley Sharp has called such framing "the greening of the body." "Throughout the 1990S," she writes in the March 2001 issue of American Anthropologist, "organ transfer has experienced an astounding proliferation of metaphorical language and ecological imagery." The imagery advances the idea that loved ones are being recycled, reborn through the gift of tissue. Donor agencies spurn thoughts of decay, death, and the loss of a specific person, steering patients toward highly generalized ideals of life and regeneration. The industry's websites and literature include far more portraits of beaming toddlers than of the elderly who provide most of the tissue.
Where donor agencies do address loss, the language is elusive, metaphorical, and almost comically devoid of content. A FAQ explains that "all grief is unique," and family members can send any questions about their own grief to a "bereavement specialist" by email. Customer service reps may be available 24/7, but the bereavement specialist requires at least one week to think up an answer. "You are brave to weather the pain of grief," reads one such long-awaited response. "It is a long road and a demanding journey, and not one that others can navigate for us."
Donor families are invited to add to an "online memory quilt," an oddly digital expression of grief suspended in cyberspace. Grieving family members are asked to choose from a list of greeting card-like messages, such as "Love so simple, so pure, so true ... all in one precious bundle ... perfect beyond belief." They then choose from a set of brightly colored pictures--balloons, teddy bears, hearts--and add the square to the pixelated quilt.
The Disassembly Line
Predictably, the industry claims all of this is for the benefit of the donor family. Donor interests and those of the procurement organization are assumed to be identical. Speas says careful word use is necessary to protect grieving donor families from even more sorrow as they send a relative's body into the donation process. "With the BTS scandal, all the old words were used," she complains, "which makes the donor families who have given the gift just cringe. You know, it's really all about them."
P.R. machines like LifeNet and WRTC have well-established systems for recruiting and processing donors. WRTC has been around for 20 years, and for most of that period its monopoly on local organ donation prevented it from having to compete for the dead. But since no such monopolies are mandated for tissue donation, entrepreneurs have appeared, encouraged by insatiable demand.
One of those businessmen is Brent Bardsley, co-owner of the Anatomy Gifts Registry (AGR) in Hanover, Maryland. Brent and his brother Jim started out as tissue recovery coordinators at the Institute for the Advancement of Medicine, a nonprofit that recovers fetal tissue from terminated pregnancies for research purposes. In 1995 they decided to strike out on their own, founding AGR and eventually focusing on the recovery of adult cadaveric tissue, all of it gifted by altruistic donors.
AGR is officially a nonprofit, but it is also very much a start-up venture, and its operations reveal a lot about the tension between the rhetoric of altruism and the reality of the marketplace. Its headquarters sits in the last of a long row of single-story brick buildings near the Baltimore airport. Little distinguishes the outfit from its neighbors, most of which have chosen this location for the same reason: proximity to delivery planes. Some of the neighboring businesses are sending electronics all over the country and the world. Bardsley is doing the same with body parts.
Jim and Brent Bardsley process 40 to 50 donated bodies a month, extracting pieces and sending them off to medical device companies. Procuring tissue for research is less lucrative than selling parts for transplantation, but it is also subject to fewer regulations. When regulators complain that "you can start a tissue bank in a garage," they're talking about places like AGR.
Indeed, AGR is part garage, part laboratory. As Jim and Brent show me the cavernous main storage site, a white van backs right into the facility. A woman jumps out, opens the back of the van, pulls out a covered body, and feeds it into a body cooler. One side of the cooler opens at the drop-off point, and the other end opens into a dissection room. "We invented that system," says Brent, hands on his hips, ever the can-do business owner. Cracking open the body cooler to offer me a peek, Jim warns, "It's pungent in here."
The dissection room is small, cold, and filled with steel. A couple of sinks line one wall; dissection tables line the other. At harvest time, two of the Bardsleys' six technicians will dissect a body at once. The two will look to fill specific orders: limbs, internal organs, brain tissue, joints, and whatever else researchers have requested. "We try to customize the recovery to maximize the donation," Brent explains, "to use as many tissues as possible."
A steel specimen refrigerator holds extracted parts until the serological results come back, when they will be released for sale. Until then, the parts are wrapped in blue plastic and stored in freezers. The plastic package I'm staring at, Jim informs me, contains a pelvic girdle.
The Bardsleys are clearly more excited about an adjacent lab they're still preparing for use. As their business expands, they want a room to rent out so clinicians can train there in the facility, and they're building a sterile white space to meet the latest biosafety standards. At the same time, much in the facility is secondhand equipment cast off by medical schools. "That's a vintage autopsy sink," Jim says, pointing.
Back in the cavernous main facility, 20-odd freezers contain parts waiting to be shipped to medical device companies: spines, joints, whole torsos. On a raft above us are a set of Styrofoam containers for packing. The room is dominated by a tall, jet-black machine in its center. Brent flips it open to reveal a tiny pile of ashes and bone fragments. All the parts that don't make it to the airport come here, to the cremator. When the ashes are ready, they're scooped into a plastic black box for mailing, labeled with the tracking number.
AGR does not price parts based on demand. After all, on paper the Bardsleys aren't selling parts at all. They're selling recovery services at a "reasonable price." Because the same amount of effort goes into recovering a cadaver heart as a cadaver lung, internal organs cost one flat fee: The cost of a heart is the cost of a lung.
Brent says he hasn't made up his mind about whether donors should be paid for parts, but he understands the contention that donors deserve a piece of the pie. "Organizations are standing to make money, and why shouldn't the public be able to participate?" he reasons. But when money is involved, he adds, "the federal government views this as coercing people to donate. We can't be perceived as coercing people."
The Bardsleys have been criticized as unscrupulous simply for covering cremation costs for donors; they are assumed to "coerce" poor families into donating by absorbing the cost of disposal. The resistance to allowing cash for payment, says Brent Bardsley, would be far stronger.
But the Bardsleys do more than most to accommodate families; they're new and agile, making up the rules as they go along. Donor families worry about whether the ashes they get belong to their loved ones, so the Bardsleys have installed security cameras to record the drop-off-to-cremation cycle. Families sometimes want remains directed to certain research areas; when this is possible, AGR tries to comply. What families don't want, in many cases, is to know exactly what's going on--though the Bardsleys will show the facility upon request. "Most people," Brent comments, "don't ask for the grand tour."
Scandal and Reform
During the last five years, scandals involving tissue procured and resold illegally have chipped away at the neat separation between altruistic donation and big business. UCLA, Tulane, the University of Texas Medical Branch, and the University of California at Irvine have all been accused of reselling bodies donated for research. To get a sense of how many lawsuits are currently pending, consider the way corporations have come to calibrate their legal troubles. "Of all the cases filed in state and federal court," LifeCell attorney David Field recently boasted to the Associated Press, "it appears less than five possibly involve LifeCell."
Doctors, journalists, and legislators are apt to blame the profusion of scandal on the pursuit of profit. Calls for reform rarely suggest that donors should be compensated; profit is perceived as the problem, not the solution. In April Sens. Charles Schumer (D-N.Y.) and Patrick Leahy (D-Vt.). introduced the Safe Tissue Act, a bill that would, among more defensible measures, require the secretary of health and human services to "promulgate regulations defining 'reasonable payments'" for procuring and processing tissue. Instead of letting middlemen set their own prices, the government would set the cost of recovering tissue and thus the price of parts.
The bill never made it out of committee, though it is indicative of the quality of solutions currently on the table. Price controls would do nothing to remove profit from the system of exchange; biotech firms would still buy, manipulate, and resell the tissue. While firms may find themselves paying less for donor tissue under such a regime, families would remain uncompensated and uninformed. The market would remain intact and unacknowledged, exploiting donors and their families.
The alternative reform--compensating donors, the crucial source of material upon which life-giving treatments depend--has hardly been discussed. Tissue markets are a well-kept secret, and when scholars talk about creating markets for body parts, they're usually talking about kidneys, not skin and bone. The key difference between tissue markets and organ markets is that the former don't have to be created; they are already the primary means by which tissue finds its way from donor to recipient.
Compensation to donors might take a variety of forms, from reimbursement of funeral expenses to charitable donation to direct payment. Tissue is already treated as property once it is processed; if it were legal property before it left the donor's body, sales would go to donors' estates along with other assets. Profits from their sale would be willed along with the house and the car, left to favored grandchildren and pet causes.
Many bioethicists worry that payment will create a two-tiered system, in which the bodies of the poor are repurposed to serve the rich. This argument assumes that those looking to sell tissue would be done material harm by actually selling it--that the mere choice to sell is a form of coercion. Goodwin, the DePaul professor and Black Markets author, argues that the poor have the most to gain. "I don't see any logic in allowing companies to harvest individuals' body parts purely for financial gain," she says, "and meanwhile denying individuals the opportunity to pay off the costs of funeral homes and medical expenses when their relatives die. Think about the cost that poor families experience currently when they have to bury relatives. Their options are, well, do we sell some furniture to pay for this funeral? Do we sell the car?"
The potential for wealth transfer is significant and, given the pace of biomedical advance, sure to increase. And a formal market has another benefit, one whose necessity becomes more evident with each successive scandal: transparency. The same lack of transparency that discourages nonprofits from talk of moneymaking allowed Michael Mastromarino to strip-mine thousands of bodies, confident that potential donors wouldn't ask questions and biotech firms wouldn't look beyond the falsified records.
Exploitation and Repugnance
The history of transplantation has been one of overcoming visceral opposition--of rejecting what the prominent bioethicist Leon Kass calls "the wisdom of repugnance." Kass, the former head of the President's Council on Bioethics, believes disgust to be "the emotional expression of deep wisdom." Wise or otherwise, repugnance has always fueled opposition to transplantation. When doctors performed the first successful kidney transplant in 1954, they were accused of playing God and cannibalizing the dead. When a South African doctor performed the first heart transplant 13 years later, he was met with the same refrain. Critics feared this new conceptual distance from the body; they warned of a future in which men and women treat the human machine like a run-down car, trading in old parts for new.
Half a century later, such predictions look less hysterical than prescient, less nightmarish than benign. Other medical advances have accelerated the process by contributing to general longevity, increasing the likelihood that an individual will wear out old parts--shot knees, worn joints--and find himself needing a replacement. It wouldn't have comforted the critics to know it, but the ability to exchange human parts has become routine, its absence unthinkable. The slope has indeed been slippery, and the benefits have been incalculable.
What remains of that initial repugnance is arbitrary and inconsistent. Patients have no problem paying for replacement parts, paying the surgeons who will implant them, paying the vast array of medical professionals who will nurse them back to health. For all the crowing over the benefits of altruism, no one has suggested that surgeons are tainted by the market that pays them so well; no one seems upset that biotech companies sell rather than donate their treatments. Patients and doctors cheer as new technologies find their way into the stream of commerce but recoil in revulsion at the thought of paying the donors at the source.
Beyond the visceral revulsion at Michael Mastromarino's ghoulish raids lies a bigger and more important story, one that offends on another level. The tissue trade in its current form violates basic ideas of fair play, free exchange, equity, and honesty. These are wrongs at which our sense of repugnance has not diminished.
The Mastromarino scandal continues to unfold. In October 2006, Brooklyn prosecutors issued yet another indictment, accusing Mastromarino of enterprise corruption. Two Philadelphia funeral homes were forced to close, and seven New York funeral directors pled guilty to related charges. A raft of post-transplant patients filed lawsuits, with others as far as Britain threatening to pile on.
Mastromarino, out on $1.5 million in bail, is looking at a possible 25 years in prison. Meanwhile, LifeCell is set to report its most profitable year ever.
Kerry Howley (KHowley@reason.com) is an associate editor of reason.
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|Date:||Mar 1, 2007|
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