Who Says You're Dead?

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Who Says You're Dead? Page 10

by Jacob M. Appel


  The relationship between surrogates and intended parents can prove complex, especially under trying or tragic circumstances. Conflict may arise over how to handle fetuses with severe defects or disabilities. While some surrogacy agreements contain clauses requiring termination in cases of severe abnormalities, it remains unclear whether these are enforceable. In a high-profile 2012 case, surrogate Crystal Kelley refused a payment of $10,000 to abort a fetus with significant deformities; eventually, she fled from Connecticut to Michigan to avoid enforcement of her surrogacy contract. A British couple made headlines in 2014 when they refused to take custody of a baby girl from a surrogate because the child had been born with congenital myotonic dystrophy, a debilitating genetic disorder—a decision which was perfectly legal in Great Britain. (The couple did claim the baby’s healthy twin brother as their own.)

  Most jurisdictions that recognize surrogacy vest all of the rights of parenthood upon the intended parents from the moment that surrogacy begins. The surrogate generally retains no such rights. In the scenario involving Beatrice and Thelma, the deaths of Perry and Patricia are unlikely to change that. Prior to the killings, Beatrice was expecting to become a grandmother and Thelma was planning to give up the child to whom she would give birth in return for compensation. Assuming Perry and Patricia’s estate pays Thelma the agreed-upon fee and reimburses her for her hospital bills, one is hard-pressed to argue why their intervening deaths should alter the contract. Most states will allow the next of kin to assume care of the newborn of deceased parents, unless they have spelled out alternative preferences. An even more challenging case might arise if Perry and Patricia had no surviving family at all and Thelma was seeking custody of the child to prevent him from becoming a ward of the state. In an odd twist, she might find herself adopting the same child to whom she gave birth.

  34

  When Sterilization Is Forced

  Maria is a fourteen-year-old girl with severe intellectual disabilities. Her IQ has been estimated between 35 and 40. When she begins menstruating, she finds the process severely traumatic and believes that she is bleeding to death. She sobs for hours, rocking back and forth in bed until her period ends. This occurs every month for nearly a year.

  Her parents, Henry and Eliza, are reluctant to place her on a birth control regimen because there is a strong history of early-onset strokes in the family, a relative contraindication for oral contraceptives. Instead, they would like to have Maria’s uterus and ovaries removed surgically. They believe this will serve her emotional well-being. However, the involuntary sterilization of those with cognitive impairments has a long and disturbing history in both Europe and the United States, so Maria’s physician, Dr. Moreau, refers the case to a senior ethicist at the hospital for guidance.

  Should Dr. Moreau be allowed to go ahead with the surgery?

  Reflection: Eugenics in History

  Sterilization of the mentally ill has had a controversial and often ugly history in the United States. Beginning in 1907, when Indiana first legalized the practice, until the 1970s, more than sixty thousand Americans were sterilized against their wills. This effort was part of a eugenics program that sincerely sought to improve the human species but relied largely on both faulty science and ethnic prejudices. Its most famous moment likely occurred in 1927, when in Buck v. Bell, the US Supreme Court upheld Virginia’s sterilization program in a case involving a young woman named Carrie Buck. In an opinion that has tarnished his legacy, celebrated justice Oliver Wendell Holmes Jr. declared that “Three generations of imbeciles are enough.” Holmes drew an analogy to military service, writing that “the public welfare may call upon the best citizens for their lives” and “it would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices.” Many years later, paleontologist Stephen Jay Gould investigated the circumstances surrounding Carrie Buck’s sterilization and discovered that neither she nor the daughter she had prior to her sterilization were “feeble minded,” as claimed by the state of Virginia. In 2013, North Carolina agreed to pay millions of dollars to compensate victims of its forced-sterilization program.

  Any discussion of sterilizing Maria must occur against this grim historical backdrop. Some modern ethicists have argued that, in spite of this legacy, sterilization of those unable to consent should still be permitted when the benefits to the patient outweigh the costs. If individuals have the cognitive ability to consent to sterilization or to engage in parenting, the decision should be left to them; in cases where they do not, some argue that the welfare of the patient, or of both the patient and society, should be weighed in making such a decision. The American College of Obstetricians and Gynecologists does not automatically prohibit sterilization for impaired individuals but suggests the decision be made in consultation with the patients’ parents and caregivers.

  Critics of such an approach argue that there are some medical interventions that just should not be done, ever, despite the potential merits in certain circumstances. They often classify forcible sterilization as beyond a red line. Justice Holmes, in a different case, quoted the adage that “hard cases make bad law.” By allowing sterilization in an extreme and emotionally charged case like Maria’s, this critique charges, one establishes a precedent for similar action in cases that may prove more troublesome.

  If one does believe that involuntary sterilization is sometimes permissible, though, it is hard to conceive of a more meritorious case than Maria’s. Her menstruation is causing her personal, acute, and recurrent distress; other, lesser interventions are medically contraindicated; and her parents have advocated for the sterilization out of what appears to be a sincere concern for Maria’s welfare. Other cases, alas, may prove even more fraught with complexity.

  35

  Paying for Girls

  A small wealthy nation faces a demographic challenge: as a result of infanticide and illegal sex-selective abortions, the number of males who live to adulthood is projected to exceed the number of females who do so by 15 percent within the next twenty years. This reflects a traditional preference for male heirs combined with technologies that enable couples to know the gender of their fetus in utero. The leaders of the nation fear this gender imbalance will lead to social unrest and widespread unhappiness.

  To combat this problem, the national government decides to set up a state-sponsored program of “sperm sorting.” Sperm sorting allows male sperm to be separated from female sperm prior to conception; the female sperm can then be used for artificial insemination, producing female babies. The process is not foolproof—but it is 70–80 percent effective. The country decides to offer sperm sorting for free to any couple willing to select a girl. These couples will also receive a payment of $10,000.

  Is such a program ethical?

  Reflection: Sex Selection

  Many would-be parents throughout history have had gender preferences for their children. Until the second half of the twentieth century, these individuals had limited recourse. As every English schoolchild learns, King Henry VIII’s desire for a male heir—and his limited understanding of reproductive biology—cost several royal wives their heads. Since the 1970s, however, various methods have been available to influence a child’s sex. The first of these techniques, named after its developer, Ronald Ericsson, takes advantages of the differing “swim” speeds of male and female sperm. Sorting sperm by sex and then using artificial insemination reportedly achieves 69–75 percent success. Preimplantation genetic screening (PGS), which became widely available in the 1990s, affords much higher accuracy rates. A third approach, pioneered by Glenn Spaulding, uses flow cytometry to separate male and female sperm prior to conception—avoiding the destruction of embryos that accompanies PGS. The rise of affordable ultrasound technologies, which enable parents to know the gender of a fetus in advance, has also led to sex-selective abortions.

  Gender preferences differ significantly by nation and culture. In the United States, data suggests a bias toward gi
rls in couples using PGS—or, at least, among those who do select for gender. In contrast, a large swath of Asia—including China, India, South Korea, and Bangladesh—displays a preference for boys. Economist Amartya Sen was the first to publicize the gender imbalance in these Asian nations resulting from a generation of “missing women”: female victims of either gender-selective abortions or infanticide. (A competing hypothesis advanced by economist Emily Oster attributes the gender imbalance to the influence of endemic hepatitis B, but it appears to be less persuasive.)

  Far from being only individual reproductive choices, parental gender preferences may have widespread societal implications. Psychologists and sociologists have linked this artificial gender imbalance (i.e., a population with an unnaturally elevated ratio of boys to girls) to political instability and violence, as large numbers of young males are unable to marry and start families. In Bare Branches: The Security Implications of Asia’s Surplus Male Population, political scientists Valerie Hudson and Andrea den Boer have also suggested that the gender imbalance in China, and especially the preponderance of single low-status males, may threaten international security.

  Some critics of sperm sorting will object to all efforts to tamper with so-called “natural” human reproduction. For many ethicists, context can shape the morality of reproductive choices. Using sperm sorting to create a male baby in China or India, where doing so exacerbates existing gender imbalances and contributes to underlying social problems, may be unethical. In contrast, a family who already has several girls in female-majority Russia or Hong Kong might harness the identical technology to have a boy for the purposes of gender balance without raising the same ethical concerns. Of course, as in the scenario presented, one might question the wisdom of paying anyone to have a child—either male or female—in a world already suffering from overpopulation and a shortage of resources.

  36

  Tube-Tied

  After Barbara gives birth to her fourth child, she decides to have her “tubes tied” through a surgical tubectomy. Her husband, Oliver, fully supports her decision. Barbara enlists Dr. Crane, a well-regarded gynecologist, to perform the operation. Barbara returns home and—after waiting forty-eight hours, as instructed—resumes her vigorous sex life with her husband.

  Approximately five weeks later, Barbara realizes that she is pregnant. As she and Oliver do not believe abortion to be ethical, she has no choice but to bring the fetus to term. Nine months after an operation to have her tubes tied, Barbara finds herself to be the mother of a lovely baby girl.

  Barbara and Oliver sue Dr. Crane for malpractice. To their surprise, the physician acknowledges his mistake. “I looked at my notes,” he says. “I seem to have tied only one tube.” Where Dr. Crane disagrees with the couple is over the damages. He says, “I’ll pay the medical costs for the pregnancy and for another tubectomy, and also a reasonable sum for their surprise—but let’s face it, they’re not really any worse off than they were before I operated. They have a beautiful child, don’t they?” Barbara and Oliver insist that it is not nearly enough. They want considerably more money, enough to offset the cost of raising their daughter from diapers through college.

  Who has the better argument regarding the amount of damages owed?

  Reflection: Wrongful Birth

  The legal system has long grappled with cases of individuals who benefit from an interaction, but sue anyway, claiming they did not benefit as much as promised. Such cases are particularly common in medical malpractice. In fact, one of the most famous cases in all of legal education—featured in the 1973 film, The Paper Chase—that of Hawkins v. McGee (1929)—involved a surgeon who promised a disabled patient a “perfect hand” but merely produced a functional one. That case, and many others, ask: Should one receive “expectation damages,” based upon what one was promised, or only actual damages, measured by how much worse off one is? These issues are particularly challenging in scenarios of “wrongful birth” or “wrongful life”—the former referring to suits by parents on behalf of unwanted offspring, and the latter to those by the progeny themselves. These suits often involve severely disabled children whose doctors conduct inadequate preimplantation screening or negligently fail to diagnose disabilities prior to birth. They tap into complex philosophical questions, such as how one values existing with a crippling disability versus not existing at all.

  Wrongful-life claims date back to at least the early 1980s. In the first case of its kind, Wrenn and James Turpin of California successfully sued the physicians who had failed to diagnose a genetic hearing defect in their older daughter until after their younger daughter was born. If the couple had known they carried the recessive genes that might lead to deafness, they argued in court, they would not have risked giving birth to a second daughter who also turned out to be deaf. (This was technically a wrongful-life case because the couple sued on behalf of their child.) In a New Jersey case in 1984, the parents of Peter Procanik won a similar suit on the grounds that physicians had failed to recognize his mother’s German measles, leading to his congenital rubella syndrome.

  In response to these lawsuits, which some critics viewed as legitimizing abortion, a number of states passed statutes specifically prohibiting such claims. A Utah court even interpreted state law to protect doctors who intentionally withhold a fetal diagnosis to deter an elective abortion. Law professor Wendy Hensel has criticized such lawsuits as divisive to the disabled community and a “threat facing all individuals with disabilities.”

  How one feels about damages in these cases may depend, in part, upon one’s view of the purposes of the medical malpractice system. If one sees damages as a way of making the victims “whole” again, then Barbara and Oliver may have a less persuasive case for large-scale compensation. Juries tend not to award much money to parents of healthy children, no matter how egregious the circumstances of their births. In contrast, if one considers the principal goal of the malpractice system to be punishing negligent physicians, in order to deter sloppy care, then a much stronger case can be made for making Dr. Crane (and his insurer) pay. If Dr. Crane’s insurance premiums skyrocket, one imagines that he would be more careful about tying tubes in the future.

  37

  When Human Cloning Becomes Possible

  Dr. No, a well-regarded Ivy League philosophy professor, was the leader of a sect of devout atheists who followed his creed of skepticism and self-interest. He and his followers were interested in having him cloned, so that his successor might have his exact DNA, even though the technology to clone humans was not yet available. However, Dr. No arranged to have a sample of his DNA carefully preserved in case the technology was developed someday. He also identified several young women whom he wanted to bring his cloned embryos to term.

  Eventually, Dr. No died. His followers remain deeply devoted to his beliefs. If scientists are able to develop the technology to clone humans, and one of these women is still willing to bring the clone to term, would it be ethical to fulfill the wishes of Dr. No and his followers?

  Reflection: Human Cloning

  Although Aldous Huxley introduced readers to human cloning in 1932 in his novel Brave New World, where “Bokanovsky’s Process” produced batches of identical humanoids, the prospect of human reproductive cloning as a genuine scientific possibility did not arise until the 1960s. In the wake of British biologist John Gurdon’s experiments transferring nuclei from frog cells into enucleated eggs, Nobel laureate James Watson penned an essay, “Moving Toward the Clonal Man,” in the Atlantic Monthly in 1971 that placed the issue squarely on the public radar. Another twenty-five years elapsed before the cloning of Dolly the Sheep demonstrated that mammalian cloning was achievable in practice.

  Whether human reproductive cloning is possible remains controversial, but no successful attempt has been documented. Cypriot American biologist Panayiotis Zavos has claimed twice—in 2004 and 2009—to have cloned and implanted human embryos, but has not provided evidence. South Korean veterinarian Hwang Woo-suk�
��s claims to have cloned embryonic stem cells were retracted as fraudulent in 2005. About forty-six nations, including Great Britain, France, and Germany, have banned reproductive cloning. So have approximately fifteen US states. In 2009, President Barack Obama declared that reproductive cloning “is dangerous, profoundly wrong, and has no place in our society, or any society.” However, inability to reach a consensus on the subject of “therapeutic cloning”—a related process in which cloned embryos are created for research or medicine, rather than brought to term—has prevented passage of a federal ban on cloning in the United States.

  Critics of human reproductive cloning fall into two broad categories. One set of scholars objects to the practice in principle, arguing that it undermines human dignity—either that of the clone or that of human beings as a whole. These opponents note the potential that cloning has to undermine family life; with cloning, no genetic partner is needed to reproduce. They assert that every human being has “a right to his own genetic identity” (to quote the European Parliament’s 1998 resolution against cloning). They also express the fear that clones will be created for “instrumental” purposes, such as to provide donor tissues or organs for their progenitors. Possibly the most vocal critic from this camp is Leon Kass, the chair of the President’s Council on Bioethics under President George W. Bush, who wrote in 1997: “We are repelled by the prospect of cloning human beings not because of the strangeness or novelty of the undertaking, but because we intuit and feel, immediately and without argument, the violation of things that we rightfully hold dear.” A second group of critics opposes reproductive cloning on more practical grounds. These opponents argue that there will be “clonism” (i.e., discrimination against clones) and that the process is fraught with risk for the potential clone—including serious disability and illness—citing the short, often disease-ridden lives of other cloned mammals. Until these difficulties can be resolved, they argue, cloning is a dangerous and unjust experiment.

 

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