Who Says You're Dead?

by Jacob M. Appel

  Byzantine doctors first separated a set of twins in the tenth century. Advances in surgery have allowed for more sophisticated procedures: in 1957, Bertram Katz divided Johnny and Jimmy Freeman, who had been born sharing a liver; Ben Carson made headlines in 1987 detaching the Binder twins, who had been joined at the back of the head. Yet not all conjoined twins can be separated—and often the surgery itself involves considerable risk. Sometimes, there is a 100 percent likelihood that one twin will die. This was the situation with Jodie and Mary, twins from Malta, whom an English court ordered separated in 2000 over their parents’ objections. In that unique case, Mary was dependent upon the heart and lungs of Jodie—and was slowly draining Jodie of life. Without the operation, both girls were ultimately expected to perish.

  Significant ethical questions arose when twenty-nine-year-old Iranian sisters Ladan and Laleh Bijani pursued separation surgery in Singapore that entailed a 50 percent chance of death or brain damage. They died during the 2003 operation. In that case, both sisters had sought surgery. More challenging would be a case where one of the siblings objects to the procedure. In many ways, this dilemma embodies the core conflict in contemporary bioethics: how to balance quality of life and sanctity of life. For Lucy, quality of life has dropped low enough that she will risk death to improve it. Lily, on the other hand, holds life sacred and is not willing to risk it to improve her lot. There are three possible resolutions for this scenario. One might decide that nobody should ever have to risk her life or undergo major elective surgery against her will, and side with Lily. Alternatively, one might rule for Lucy on the grounds that nobody should be forced to spend her life “chained” to another person. Finally, one might decide these matters on a case-by-case basis determined by survival odds. Many people would order the surgery if both twins had a 99 percent chance of surviving, but not if their odds of surviving were 1 percent. Where to draw the line, of course, proves difficult, especially if odds of one twin surviving differ from that of the other.

  Part Three

  Making Babies

  Ethical decisions surrounding reproductive decision-making are among the most highly charged and controversial in the United States today. The series of Supreme Court cases surrounding the legalization of abortion, most notably Roe v. Wade (1973) and Planned Parenthood v. Casey (1992), have become polarizing events in the political process, and the “third rail” of federal judicial appointments. Yet the issues surrounding pregnancy and childbirth extend well beyond the likely irresolvable question of when life begins. Some of these questions derive from the increased social acceptance of so-called “nontraditional families”—itself a highly problematic term.

  As individuals and couples of diverse gender identities and sexual orientations seek to bear and raise children, ethical and legal norms must evolve. But how? Advances in alternative reproductive technologies—from in vitro fertilization to preimplantation genetic diagnosis—empower prospective parents and increase reproductive autonomy but also raise unsettling questions about their limits. Should anyone—of any age or of any moral character—be allowed to produce and raise children? And should they be allowed to harness genetic innovations to decide which phenotypic traits will be reflected in their offspring? These questions are certainly not easy to answer, and new technologies are emerging at such rapid speeds that ethicists will likely always be developing and framing the issues.

  26

  A Child with a Purpose

  Harriet and Arthur have a teenage son, Gary, who suffers from leukemia and requires a bone marrow donor. Unable to find a suitable match through existing donor databases, they decide to conceive a second child through in vitro fertilization, using new technologies to make sure this second child is a potential match. As Harriet and Arthur are already in their late forties and not prepared to raise a second child, they have arranged for the young married couple living next door to adopt the child. As part of the adoption agreement, it is understood that when the boy or girl is physically old enough to donate bone marrow, these neighbors will consent to the procedure on behalf of their adopted child.

  Is it ethical for Harriet and Arthur to make this arrangement?

  Reflection: Savior Siblings

  The development of two distinct technologies, preimplantation genetic diagnosis (PGD) and human leukocyte antigen (HLA) testing, allows for the creation of “savior siblings,” who can donate lifesaving tissue to brothers and sisters with otherwise fatal diseases. PGD enables parents to screen embryos in advance of implantation—choosing to implant only those that have the potential to save of the life of their existing child. HLA testing allows them to know which embryos to choose. In 2001, a team of researchers in Chicago, led by Yury Verlinsky, first reported using PGD to save the life of a patient with Fanconi’s anemia. Pulitzer Prize–winning journalist Beth Whitehouse’s The Match (2011), based on a series of Newsday articles, recounts one family’s efforts to have a second child to save a daughter afflicted with Diamond Blackfan anemia. The savior-sibling concept also forms the basis for Jodi Picoult’s best-selling novel My Sister’s Keeper (2004). Great Britain’s Human Fertilisation and Embryology Authority has authorized the practice, which is also widely available in the United States, although no reliable statistics are available on its frequency.

  The creation of savior siblings is not without its critics. Opponents of the process object to using a human being as a “commodity” to serve a particular end. They also argue that these “designer babies” are the gateway to other uses of PGD, such as the elimination of disabilities or the creation of embryos with particular appearances. Yet the strongest critique comes from those ethicists who worry for the welfare of the savior siblings themselves. Will parents treat that second sibling differently? Will that child feel unwanted? Will that child be unwanted—merely a necessary inconvenience generated solely to save a beloved first child? Britain’s Daily Mail poignantly quoted one such seven-year-old savior sibling, Jamie Whitaker, who said of his role in saving his brother’s life, “I know I was born to do that instead of being just born for me.”

  Existing siblings who are not matches may also experience jealousy or guilt. In the case of Gary, Harriet and Arthur do not blunt their motives. They do not want a second child, merely a savior for the first. However, the neighbors do want a child. In that way, the situation seems not unlike many other open adoptions or surrogate births. Whether or not the savior sibling could be forced to donate in this case, should the neighbors renege, is a harder question. Similarly, the issue would prove more difficult if the savior sibling faced a greater risk or significant medical consequence—as might occur if the second child were conceived as a potential kidney or cornea donor. It is hard to imagine a couple with a blind child and a sighted child, for example, being permitted to transfer a cornea from the latter to the former. No such concerning context appears to arise regarding Harriet and Arthur’s bone-marrow-transplant goals.

  People have children for all sorts of reasons—some noble and others base. For the most part, the state does not look into the motives of prospective parents. A case can be made that doing so for couples who seek PGD to create savior siblings is somewhat arbitrary.

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  “We Want a Deaf Baby”

  Jim and Janice are a deaf couple living in a large Midwestern city. Janice has been deaf since birth, while Jim lost his hearing as a result of meningitis at age two. The pair are both active members of the local deaf community. They have a deaf daughter, Abigail, who is nine years old.

  When considering a second pregnancy, Janice undergoes genetic testing and learns that she carries a gene mutation that means any child she conceives will have a 50 percent chance of being born deaf. The couple then visits a fertility specialist in order to have a baby through in vitro fertilization (IVF). They request that the doctor use preimplantation genetic diagnosis to separate out the embryos with the hearing-loss mutation, and that the doctor implant one of these embryos, thereby ensuring that they will h
ave a deaf child. “We want to preserve our deaf culture,” explains Janice. “Deafness is part of our family’s lifeblood.”

  Should the doctor implant a deaf embryo intentionally, rather than a hearing one, so that the couple have a deaf baby?

  Reflection: Reproductive Technologies and Disability

  Deaf culture refers to a series of traditions, social norms, and values embraced by individuals with varying degrees of limited hearing acuity. Many members of the deaf community do not consider their deafness to be a disability at all. For them, having a child who can share their distinctive culture is an asset, not a liability. Similar reasoning is used by some deaf couples to reject cochlear implants for their children. What complicates this scenario is that Jim and Janice want to use modern reproductive technologies to create a child who exhibits a condition that many nondeaf individuals do view as a disability. If one accepts their choice, one must then explain how the case differs from a deaf couple who give birth to a hearing infant but, wanting a deaf child, ask the physicians to sever nerves in her ears to render her deaf. The moral distinction between choosing to create a deaf embryo or painlessly deafening an infant is somewhat arbitrary, often resorting to the fallacy of appealing to nature, and is generally hard to defend philosophically. At the same time, many people viscerally react to the cases differently—and the law clearly views the latter sort of intervention as a form of child abuse. There is no way of knowing in advance whether any particular child would be better served with or without the selected trait. One cannot wait until the child turns eighteen and then take her hearing away, nor can one deny the child hearing until age eighteen and then restore it.

  In 2008, a deaf British couple, Tomato Lichy and Paula Garfield, who already had a deaf child, sought to use IVF to select for a second deaf child from a mix of deaf and hearing embryos. Parliament responded by passing the Human Fertilisation and Embryology Act 2008, which prevents using reproductive technologies to select for an embryo with a “serious physical or mental disability.” Whether deafness qualifies as a serious disability remains an open question. (Of note, Lichy and Garfield ended up having a second daughter the old-fashioned way; by chance, she is also deaf.) In the United States, such selection is generally unregulated. One can imagine that few physicians would agree to select for an embryo that all would agree was severely disabled or carried a serious disease—such as intentionally implanting an embryo with a higher risk of cancer. Yet if society were to accept deafness as a legitimate trait for selection, one could make similar cases for blindness, dwarfism, and a host of other traits that threaten to limit the offspring in some manner.

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  Who Owns That Embryo?

  Glenn and Gillian, a married couple in their thirties, use in vitro fertilization to have a son, Frank. As they do not believe that destroying embryos is ethical, the pair arranges to have the other two embryos created through the IVF process frozen and stored in a special facility. They have not yet decided whether they wish to have more children. If not, they have informally discussed donating the extra embryos to other couples in need.

  After twenty years of marriage, Glenn and Gillian divorce bitterly. Gillian, now in her late forties and past menopause, wishes to use the other embryos to have children on her own. “I absolve you of all responsibility and all child support,” Gillian tells Glenn through her lawyer. Glenn is unwilling to consent to Gillian’s using the embryos. He has already remarried and fathered another child. “Two kids are enough for me. More than enough,” he responds. Glenn and Gillian never addressed—orally or in writing—what was to be done with the embryos if they divorced, nor is there any clear rule in their state that applies to such cases. A family court judge is assigned to decide the matter—and she is determined to “do the right thing” in this case.

  Should the judge award the embryos to Gillian?

  Reflection: Embryo Custody

  Modern reproductive technologies have resulted in an estimated one million frozen embryos in storage in the United States. Unlike in some other countries that have set limits for the amount of time embryos can be stored, US law allows these entities to be preserved indefinitely. What is to be done with these embryos—which some view as potential life and others as property—poses a quandary, especially when divorcing parties disagree. These issues gained national headlines in the United States in 2015 when Nick Loeb, the ex-fiancé of Modern Family actress Sofia Vergara, penned a New York Times column making his case for custody of two embryos the couple had created prior to their split.

  One key factor in assessing these disputes is whether couples have a written agreement determining how to handle embryos in case they part ways. (Loeb and Vergara apparently did have such an agreement—one that favors Vergara’s position). While some states, most notably New York, have honored preconception agreements, it is not clear that all states will do so. By comparison, a parent cannot enforce a binding prenuptial contract regarding custody of a child, as children are not treated as property to be transferred at will. Despite this legal uncertainty, most fertility clinics now require clients to sign such directives.

  At least ten cases have addressed this issue in US courts since 1992, when in Davis v. Davis, the Tennessee Supreme Court ruled that disputed embryos were neither persons nor property but belonged to an “interim category that entitles them to special respect because of their potential for human life.” A majority of these cases were decided in favor of the parent who opposed bringing the embryos in question to term. In several other cases, the winning parent was a mother who had undergone chemotherapy resulting in infertility; implanting stored embryos was her only way to become a biological parent.

  Lawyer Heidi Forster Gertner, one of the leading experts in the field of embryo custody, has identified certain trends in these cases: Courts generally honor advance written agreements between partners, while in the absence of such an agreement, judges favor the right not to reproduce over the right to reproduce. One exception to this general trend favoring nonparenting occurs in cases where one partner can no longer reproduce biologically in any other way, in which case her parenting rights are given priority. A distinction should also be noted between these cases, in which one of the partners wishes to raise the child herself, versus a hypothetical scenario in which a partner, motivated by religion, seeks to donate the embryos to a third party for so-called “embryo adoption.” One suspects that courts will prove far less sympathetic to parties seeking to “adopt out” stored embryos.

  In Glenn and Gillian’s case, Gillian’s inability to procreate through other means might be given considerable consideration in deciding this dispute. At the same time, although she has personally absolved Glenn of responsibility and child support, state law might still hold him liable for the upkeep of these additional children—especially if these children were ever to rely upon public assistance.

  29

  Privacy Invasion or Child Protection?

  A Midwestern state is very concerned about the number of children born to cocaine-addicted mothers. While fears of prenatal cocaine exposure received much attention during the 1980s, and were probably overblown, cocaine use by pregnant women can result in babies with significant birth defects. Moreover, children raised in homes where cocaine is used run a higher risk of exposure to violence.

  To deter such behavior, the state wants every newborn baby to be tested for cocaine in the bloodstream. The state asks hospitals to turn over the results, intending to place infants found to have cocaine in their bloodstream in foster care and to charge their mothers with the misdemeanor of child endangerment. However, the state’s request is not legally binding, and doctors are permitted discretion regarding whether or not to turn over these test results.

  Should physicians turn over these test results to the authorities?

  Reflection: Punishing Prenatal Conduct

  Many activities of pregnant women may have an impact on fetal life or health. Alcohol exposure in utero can cause intellectu
al disabilities. Smoking cigarettes can lead to miscarriages and underweight babies. The use of common pharmaceuticals can result in devastating birth defects. High-risk behaviors, such as motorcycle riding and mountain climbing, may also increase the likelihood of fetal injury. The government has generally sought to inform pregnant women of various potential threats, allowing them to make their own determinations about risk. Of course, all of these activities are legal. In contrast, some state governments have severely penalized women whose use of illicit drugs, most often cocaine, has allegedly led to injury or the death of the fetus.

  In 2014, the New Republic reports that sixteen states currently treat in utero exposure to illicit drugs as a form of child abuse; fourteen require physicians to report such use. Several states, most notably South Carolina, have prosecuted women for exposing fetuses to cocaine. In 2001, Regina McKnight was convicted of homicide and sentenced to twelve years in prison for delivering a stillborn fetus after using the drug.

  Advocates for such laws argue that exposing a fetus to potentially deleterious drugs is no different from other forms of child abuse. Surely, nobody would object to prosecuting a parent who allowed her one-year-old to snort cocaine or to shoot heroin. The purpose of laws such as South Carolina’s is to prevent children from suffering the often-devastating consequences of exposure to various illegal substances. Yet critics of such laws argue that mothers like Regina McKnight are suffering from addiction, a medical condition, and are being punished for their inability to refrain from drug use. Opponents also note that these rules fall most heavily upon impoverished women and racial minorities, and that prosecutorial discretion often shields middle- and upper-class mothers from similar charges. A genuine concern exists that if such laws were to become widespread and well-known, some pregnant women would forgo prenatal care entirely in an effort to avoid toxicology testing—undermining the welfare of the fetuses that the laws are intended to protect.