Bailey had made no attempt to find a human heart for transplant prior to the surgery, a decision later strongly criticized by many ethicists. While some supporters compared the case to that of Barney Clark, the dentist who received a “permanent” artificial heart in 1982, many bioethicists reject the comparison. Clark’s doctors had sought—and found—no alternatives for their critically ill patient. He was also an adult, fully capable of consenting to the experimental treatment, while Baby Fae’s team had relied upon the permission of the child’s parents. A leading health scholar, George Annas, asked in the Christian Science Monitor in 1984: “Are we getting back to the old days when doctors just experimented [on people]?” In Time, columnist Charles Krauthammer derided the surgery as “an adventure in medical ethics.” Bailey did not help his own case any when he revealed publicly that he did not believe in evolution—a disclosure that damaged his credibility among a significant segment of the public.
Some opponents argue that xenotransplantation, since it violates the boundaries between species and threatens human uniqueness, could never be ethical—even if it proved highly efficacious. And animal rights advocates question whether it should be permissible to kill a higher-order ape, such as a chimpanzee, to save a human life. Yet most bioethicists who object to xenotransplantation raise doubts about the process with regard to its experimental nature. In Baby Shirley’s case, one must ask how one weighs the estimated 20 percent chance of the child receiving a human heart in time against the unknown odds of her surviving with a chimp organ. Is this a decision for her parents? For experts in transplantation? For society as a whole? From Dr. Welby’s description, the girl’s parents may have a difficult time discerning whether this transplant is primarily a therapeutic intervention or an experiment. At a minimum, before being allowed to consent to such a high-risk procedure, they should be informed of the grim historical context: if past experience is any indication, Dr. Welby’s proposed surgery appears unlikely to work.
22
A Head Case
Don, a forty-year-old neurosurgeon, has been diagnosed with terminal pancreatic cancer and has only several months left to live. His colleague, Dr. Pangloss, suggests to him that his disease might afford them an opportunity to try the experiment they have both longed to perform—a human head transplant. Their goal is to attach Don’s head—and brain—to a human body healthy from the neck down.
Dr. Pangloss believes he can persuade the family of a skull trauma patient to donate such a body. He also believes that—with the help of surgeons from many fields—he can connect Don’s spine and blood vessels to the donor’s cadaver. Most likely, Don will end up paralyzed below the neck, but Dr. Pangloss holds out hope that some of the nerve fibers might connect and regenerate. “The odds are against us,” says Dr. Pangloss. “But without daring, heroic measures, you’ll be dead anyway.” Except for his pancreatic tumor, Don is in excellent health and a great candidate for major surgery. Don and his family very much want to try the radical surgery. Private charities have agreed to cover the costs.
Should the hospital’s ethics committee approve this first-ever attempt at a head transplant?
Reflection: Experimental Transplants
Brain transplantation—or whole-body transplantation—has long been a staple of science fiction. Iconic depictions include the work of Martian surgeon Ras Thavas in Edgar Rice Burroughs’s The Master Mind of Mars (1927) and the experience of patient Johann Sebastian Bach Smith in Robert Heinlein’s I Will Fear No Evil (1970). Barriers to such a procedure succeeding in real life are substantial. Soviet experiments conducted on puppies by Vladimir Demikhov during the 1950s proved largely unsuccessful. In 1970, American neurosurgeon Robert White (1926–2010) managed to transplant the head of one rhesus monkey onto the decapitated body of another, although the second animal’s immune system ultimately rejected the new head after nine days. In the interim, however, the transplanted head was able to see, hear, smell, taste—and even tried to bite a staff member. (White had already gained prominence in the 1960s for creating a “dog with two brains” by attaching an isolated canine brain to the blood vessels of another dog.) In 2018, Italian physician Sergio Canavero and his Chinese colleague, Xiaoping Ren of China, predicted that human head transplantation is “imminent,” although these claims were met with widespread skepticism in the mainstream medical community. They say their goal is to give additional life to a terminally ill patient such as Don.
Ethicists have been largely unsympathetic to these efforts. Arthur Caplan, the dean of American bioethicists, wrote in Forbes that “one would have to be out of one’s mind” to attempt a brain transplant with existing technologies. Caplan noted that such an operation would require immunosuppressive drugs that have serious side effects and risks; life on such a medication regimen might prove miserable for the recipient. Rejection of transplanted organs would pose a particular challenge in this case—likely leading to a slow and potentially painful demise. The prospect for significant psychological distress should also be considered. Clint Hallam, recipient of the world’s first hand transplant, eventually chose to have the limb amputated because he felt “mentally detached” from it. What if a head transplant recipient became similarly detached from his new body? Finally, the likelihood of reattaching spinal nerves without further technical advances seems highly unlikely. At best, Don would find himself a quadriplegic.
Balanced against these concerns stands the stark reality that, without the transplant, Don will soon die. The principle of autonomy argues for letting him make his own decisions. He is a neurosurgeon, after all—so he is likely to understand the dangers. Of course, the consequences of the surgery could prove horrific. Don might awaken to discover himself conscious but “locked” inside his own brain, without any sensory perception or ability to communicate. Even if a patient could truly anticipate and appreciate the torment that such a fate entails without actually having experienced it—which is questionable—one might ask whether there are some forms of suffering so horrific that no person should be permitted to risk them.
23
Reducing Sexual Urges
Warren is a fifty-two-year-old writer who has been troubled by sexual fantasies about underage boys and girls since his adolescence. Multiple trials of psychotherapy have done nothing to reduce his urges. A psychiatrist recommended chemical castration through hormonal injections, but Warren has learned that these treatments can increase his risk of having a stroke. Instead, he asks a surgeon in his community, Dr. Hunnicutt, to castrate him “the old-fashioned way.” Warren is on Medicaid and has no money of his own.
Should Dr. Hunnicutt agree to remove Warren’s testicles surgically?
Reflection: Voluntary Castration
Castration—both chemical and surgical—has recently gained renewed attention from physicians and policy makers as a way to prevent recidivism, which is a problem among sex offenders. In the 1960s, sexologist John Money at Johns Hopkins University pioneered the use of a contraceptive hormone, medroxyprogesterone, to reduce libidinous urges among pedophiles. California imposed such treatment upon a small segment of repeat sex offenders in 1996. In 1997, then-governor George W. Bush signed legislation that made Texas the first state to allow prison inmates to choose surgical castration voluntarily. Over the past two decades, a number of states have enacted laws either allowing or requiring some form of castration for certain offenders. Often, these statutes operate in conjunction with “civil commitment” laws, which enable states to keep convicted sex offenders locked up in hospitals after their sentences have expired on the grounds of ongoing dangerousness. Some offenders elect for castration as a means of reducing unhealthy desires or demonstrating their commitment to avoiding future offenses. Critics condemn these policies as inherently coercive. They also note the significant medical risks and side effects involved in chemical castration and the irreversibility of the surgical procedure.
A meaningful assessment of the ethics of castration—whether forced or voluntary,
surgical or chemical—might take into account its efficacy. Unfortunately, the data remain mixed. One widely cited German study, conducted by Reinhard Wille and Klaus Beier, reported only a 3 percent recidivism rate among castrated sex offenders, compared to a 46 percent rate among those not castrated. However, an analysis by Mary Barker and Rod Morgan in Great Britain questioned the effectiveness of such treatments, noting methodological problems in many studies. For instance, some researchers have included those convicted for consensual homosexual relationships among “sex offenders”—clearly creating a skewed and inappropriate sample. A comprehensive review of existing research, conducted by Linda Weinberger and colleagues, concluded that castration “alone, without attendant psychological change, may be insufficient to mitigate sexual recidivism in a person who is in the community and subject to temptations.” Conflicting data might also reflect variability among the motives of so-called sex offenders. While some might commit their crimes as a result of pedophilic urges, others may be driven by anger or have acted under the influence of illicit drugs. These latter individuals appear less likely to be tempered by castration. In Warren’s case, as his goal is to reduce sexual urges, castration may help, but it is also a significant and irreversible mutilation of his body.
Since Warren is on Medicaid, one must also decide whether the taxpayers should pick up the tab for his surgery. Warren might make his case on medical grounds—namely, that his urges are causing him significant psychological distress, and that no cheaper safe alternative treatment appears to be available. Or he could frame his argument in the name of the public welfare. Even if the odds of Warren acting on his fantasies are low—as he has not yet acted upon them in five decades—if he did, the consequences would be devastating. Preventing an episode of child abuse seems worth $18,000. The amount is also likely far less than the economic cost of trying and imprisoning an offender or providing social services for a victim. Opponents of such coverage might counter than this intervention is no different than other high-cost experimental medical interventions that are generally not covered by public insurance programs.
24
“Give Me a Horn”
Maddie is a prominent member of the body-modification community in her city. She has piercings in her ears, nose, eyebrows, and septum, and in numerous other places. She also has well over one hundred distinct tattoos. What she really wants, however, is a large fiberglass horn implanted in her skull so she can “look like a dinosaur.”
She makes an appointment with Dr. Daneeka, a prominent plastic surgeon. She wants Dr. Daneeka to screw the horn into her skull surgically—a procedure for which she will pay cash. This is not a risk-free procedure. It requires general anesthesia, which carries some danger, and could result in blood loss or infection. And this particular operation has also never been done before, so there may be unanticipated consequences. Dr. Daneeka tentatively agrees to perform the surgery, pending approval from the ethics committee at his hospital.
Should the hospital ethics committee approve this novel procedure?
Reflection: Body Modifications
Physicians have always had a complex relationship with body modification. As advocates for the public health, doctors have championed restrictions on procedures considered dangerous. For example, the risk of hepatitis led medical groups to petition for bans on tattooing in the 1960s, such as those that were enacted in Massachusetts (1962–2000) and New York City (1961–1997). Yet as members of a guild, concerned for their “turf,” physicians have also lobbied heavily to keep all body modification under the exclusive purview of the medical profession. In 1976, the Arkansas State Medical Board fought a legal battle with Edna Hicks, a cosmetologist who performed ear piercing in her shop. The medical board argued that the piercings were a form of surgery and constituted the practice of medicine, so they should only be available from a licensed physician—but the courts disagreed. Since that landmark case, a peculiar division of services appears to have arisen between individuals who perform so-called “cosmetic procedures,” which are generally done by licensed medical professionals; and those who offer “body modification” services, which often occur in tattoo parlors. Yet the bounds between these two divergent worlds remain porous and subjective.
It is also worth noting that the line between a cosmetic procedure and a medically necessary one is highly problematic. For instance, should breast reconstruction after mastectomy be viewed as essential healthcare or an elective luxury? Congress waded into this debate in 1998, passing the Women’s Health and Cancer Rights Act (WHCRA), which requires private insurers who cover mastectomies to cover reconstructive breast surgery too. In another well-known case, that of a teenager, Kevin Sampson, whose mother was a practicing Jehovah’s Witness, the courts confronted the question of whether to order surgery for a facial growth that doctors described as unsightly but not life-threatening. Kevin’s mother, Mildred, objected to the blood transfusion necessary for the surgery and argued that the procedure was purely cosmetic.
For ethicists and policy makers, the regulation of body-modification practices becomes most challenging with regard to interventions that pose some danger, especially when done in a private setting, yet which licensed health professionals are generally not interested in performing. One such phenomenon is tongue splitting or tongue forking. The procedure, which bifurcates the tongue through cutting or cauterization, sometimes allowing each fork to move separately, is desired by some for either aesthetic or sexual purposes, or both. It was popularized by a body-modification advocate nicknamed the Lizardman in the late 1990s. Although the Lizardman had his bifurcation performed by an oral surgeon, many others pursue the surgery at specialized parlors or perform it themselves, as did body-modification pioneer Dustin Allor in 1996, resulting in considerable publicity. Yet the procedure carries considerable risks—ranging from reduction of sensation to significant blood loss; in theory, severing an artery could lead to death. As a result, a number of states, starting with Illinois in 2003, have restricted the practice of tongue splitting to oral surgeons and related professionals. Yet oral surgeons are not racing to replace body-modification artists in this enterprise, so the result has been a decline in the availability of the procedure. In some places, the restrictions are, in practice, a de facto prohibition. Critics argue that the result has been an increase in risk to the community, as would-be tongue splitters are not deterred, but rather driven underground for surgery. “Corset piercing,” along the spine, and eye tattooing raise similar issues.
One might take the absolutist position that hospitals should not permit any cosmetic procedures involving meaningful risk—including nose jobs, tummy tucks, and face-lifts, as well as breast reconstruction or enhancement. After all, doctors have a duty to do no harm. However, if one accepts the psychological benefits of cosmetic intervention as justifying these more common interventions, one is hard-pressed to argue against Dr. Daneeka’s plans for Maddie. One woman’s breast enhancement, after all, is another woman’s giant fiberglass horn. Denying Maddie the appearance of her choosing seems both arbitrary and based upon culturally embedded norms that could easily change. Who can say that, in a generation, such horns will not be as common as pierced earlobes? More important, from the standpoint of health and safety, is that individuals seeking unconventional cosmetic procedures are not shut out by mainstream medicine, leading them to pursue high-risk surgeries conducted by amateurs in a black market.
25
Conjoined Twins at Odds
Lucy and Lily are eighteen-year-old conjoined twins. Unlike many of the conjoined twins depicted in the media, they dislike each other intensely and have deeply incompatible views about what it means to lead a meaningful life. To Lucy, life attached to Lily is intolerable, especially as it will likely prevent her from either pursuing a career as a surgeon or meeting a romantic partner and having a family. Lily, in contrast, is deeply religious and resigned to her fate.
The twins are conjoined in such a way that there is yet a hope for
separating them. Surgeons estimate that the risk of death during the procedure for each twin is about 15 percent—but a 30 percent chance exists that at least one of them will die. For Lucy, this operation is worth the risk. She goes to court seeking a court order for the surgery. Lily objects.
For whom should the judge rule in this case?
Reflection: Quality of Life / Sanctity of Life
Conjoined twins are a relatively rare phenomenon. Estimates place the incidence of the condition as occurring once in 25,000 to 200,000 births. The public has long been fascinated by the lives of these attached siblings. In the nineteenth century, Thai brothers Chang and Eng Bunker, the so-called “Siamese twins,” toured with P. T. Barnum’s circus. African American sisters Millie and Christine McCoy gained international fame as “the Two-Headed Nightingale” and “the Eighth Wonder of the World” in the same era. Many conjoined twins display high qualities of life, such as the widely profiled Abby and Brittany Hensel of Minnesota.
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