Who Says You're Dead?

by Jacob M. Appel

  Cloning is not without its intellectual partisans. University of Oxford philosopher Julian Savulescu, among the foremost of these defenders, argues that if the process can be perfected to resolve practical health concerns, reproductive cloning will represent “one of the greatest scientific advances” and will “signal a new kind of human relationship.” He says that clonism need not be feared, because clones will prove no more or less human than anybody else.

  This reality may turn out to be the greatest challenge to Dr. No’s followers: The doctor’s clones would share his identical DNA but would also be the product of an entirely different environment. They would not actually be him.

  Finally, one should note that the fears over human reproductive cloning as a significant social force may be largely overblown. While members of a few small religious sects, like the Raëlians, seek to use reproductive cloning, polls show that the vast majority of people have absolutely no interest in having themselves cloned.

  38

  Bringing Up (Neanderthal) Baby

  Researchers in the Alps have discovered the remains of a Neanderthal frozen and preserved in glacial ice there. With the help of fertility specialists, they are able to extract DNA from the sperm of this preserved prehuman. Their hope is to infuse his DNA into Homo sapiens sperm and use that sperm cell to fertilize a human egg. They have already recruited a female scientist who is willing to attempt to bring such an embryo to term in her womb.

  Is it ethical for the researchers to move ahead with such a project?

  Reflection: Animal Cloning

  The birth of Dolly the Sheep in July 1996 transformed animal cloning from science fiction into science fact. Since that time, researchers have successfully cloned pigs, dogs, cats, horses, rats, and a slew of other animals. The prospect of cloning human beings remains both scientifically challenging and, for many, ethically fraught. Until very recently, existing technologies did not allow for the cloning of extinct species, such as a Neanderthal, in which only fragments of DNA, rather than intact nuclei, exist. However, the development of genetic tools such as clustered regularly interspaced short palindromic repeats (CRISPR) may allow for creating a near approximation of such lost species by inserting their genes into cells of closely related living species. Harvard geneticist George Church has explained that once such DNA is reassembled inside a human cell, either a chimpanzee or an “extremely adventurous female human” might bring the clone to term. Church argues that a potential benefit to humans of such Neanderthal cloning would be increased genetic diversity. His book, Regenesis: How Synthetic Biology Will Reinvent Nature and Ourselves, ignited a widespread backlash among more risk-averse scientists.

  Assuming the cloning of a Neanderthal to be possible, the decision to clone raises distinct ethical concerns. First, if researchers were to choose a female scientist to gestate the fetal prehuman, one must consider the health and safety implications for this individual. Since this experiment has never been done before, some risks and consequences may prove unforeseen. (It is worth noting that the US federal government has deemed pregnant women to be a vulnerable population requiring special safeguards when conducting research; one wonders how an institutional review board would address a situation in which the pregnancy itself was the experiment.) Are there some risks so great, one must ask, that no person can meaningfully consent to them voluntarily?

  A second concern involves the welfare of society as a whole. Who can say that the newly created Neanderthal will not be a source of disease or that the creature will not prove violent? While one Neanderthal might turn out to be relatively harmless, this experiment would likely lead to others, and there is no telling what damage hundreds or thousands of such creatures (or the offspring of human-Neanderthal mating) might do. Moreover, society has yet to generate a set of rules governing such creatures. Would they be treated as fully human? As animals akin to other primates? Would they be held criminally accountable for their actions? Eligible for public benefits? However one feels about cloning Neanderthals, most would agree that these are questions that should be resolved before cloning actually takes place.

  Finally, any ethical assessment of Neanderthal cloning must consider the welfare of the individual being cloned. One might reasonably conclude that such a creature would face loneliness, discrimination, and a whole host of other psychological and social ills. Bringing an advanced Homo sapiens–like primate into the world merely to satisfy our own intellectual curiosity seems problematic. However, if a more compelling need arose—such as a decline in human genetic diversity that led to increased disease vulnerability—then the advantages would have to be weighed closely against the moral and practical hazards.

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  Fertility and Fundamentalism

  Betsy and Trixie are a married lesbian couple in their early thirties who are seeking to have a baby through in vitro fertilization; a male colleague of Betsy’s has agreed to serve as a sperm donor, and Trixie plans to carry the baby to term. They schedule an intake appointment at Best Babies Ever Fertility Clinic, choosing the clinic because it was recommended by Betsy’s cousin and has an excellent rating on Yelp.

  When they arrive, they complete the initial paperwork, including a demographic survey and health questionnaire. They are then ushered into the office of Dr. Higgins, an experienced ob-gyn, who explains that she will not be able to offer IVF to the couple, because assisting nonheterosexual couples with artificial conception violates her religious beliefs. “It would be unfair to all of us and would not foster a healthy, honest physician-patient relationship,” she explains. She states that she will be glad to refer them to a colleague, Dr. Sternin, who runs an excellent IVF practice fifteen minutes away.

  Should Dr. Higgins be allowed to refuse Betsy and Trixie services under these circumstances?

  Reflection: LGBTQ Rights

  For the last four decades, society has grappled with the challenge of balancing the religious liberties of physicians against the needs of prospective patients. In the 1970s, after the legalization of abortion, Congress passed legislation, known as the Church Amendment (after Frank Church, a Democratic senator from Idaho), preventing the government from forcing physicians and hospitals to offer abortion or sterilization. At the time, this “refusal clause” was largely uncontroversial, passing the Senate by a vote of 92–1. Since then, conflict has arisen around proposed so-called “conscience clauses” in some states that allow pharmacists to refuse to fill prescriptions for contraceptives.

  One should note that laws regarding reproductive health and, more recently, assisted suicide, are exceptions to the general rule that hospitals and doctors-in-training must perform all standard procedures. It is highly unlikely that a Jehovah’s Witness would be allowed to pursue a surgery residency if she agreed only to partake in “bloodless” operations or that a Scientologist would be permitted to train as a psychiatrist while opting out of the prescription of psychoactive medications. In the cases covered by the Church Amendment—as well as the subsequent Coates and Weldon Amendments—doctors were permitted to refuse to offer particular services to all people. More challenging are circumstances where providers deny service to some individuals, but not to others.

  Betsy and Trixie may liken their situation to other forms of discrimination in the delivery of goods and services, such as the baker who refuses to make a gay couple a wedding cake or the lunch counter that denies service to African American customers. A noteworthy difference is that the interaction between baker and cake buyer is largely transactional, while doctors and patients—especially in the setting of reproductive health—often require close relationships based on mutual trust and respect. It is also worth noting that many people walk into a bakery or a lunch counter off the street and will likely suffer humiliation if discriminated against. IVF services are rarely an “impulse buy” and, in theory, a fair-warning system could be set up to help couples avoid seeking services at clinics that will not serve them. Yet knowing that one has to inquire whether a clinic
serves people of one’s sexual orientation may itself be humiliating and might stamp gays and lesbians with a badge of inferiority.

  Whatever one ultimately decides about the permissibility of Dr. Higgins’s behavior, one should recognize that the case can be analyzed in one of two ways. A decision can be rendered creating a blanket rule through which either religious freedom or healthcare equality always triumphs; alternatively, one might look at the actual impact on access. Will forcing Dr. Higgins to offer services to Betsy and Trixie lead to greater IVF availability for lesbians? Or will physicians like Dr. Higgins close their doors entirely—driving both gay and straight customers to other specialists, ultimately decreasing access to IVF for all. The law remains very much unsettled in this area. In California, a long-running lawsuit between Guadalupe Benitez, a lesbian woman, and two religious physicians who refused her reproductive services, was ultimately decided by the California Supreme Court in favor of Benitez. In other states, some fertility specialists continue to refuse service to gay and lesbian couples.

  Part Four

  The Good of the Many

  How to balance the welfare of individuals against the collective good has puzzled philosophers since antiquity. The European Enlightenment of the eighteenth century, drawing upon the writings of philosopher John Locke (1632–1704), prioritized personal liberty. While embracing many of the Enlightenment’s values, utilitarian philosophers, including Jeremy Bentham (1748–1832) and John Stuart Mill (1806–1873), argued that individual welfare, on aggregate, could best be served by aiming for policies that achieve the greatest good for the greatest number of people. Meanwhile, early socialists—a wide swath of advocates for communitarianism, ranging from the utopian followers of Robert Owen (1771–1858) to the Bolshevik heirs, to Karl Marx (1818–1883), disparaged individualism as an impediment to collective action.

  Arguments can be advanced for creating societies based upon the purest forms of any of these theories, but modern healthcare is a hybrid that reflects many competing values. One may favor expanded personal freedom, but in a system where nearly all citizens rely upon some form of public or private health insurance, individual decisions impact everyone’s premiums and taxes. Utilitarian values may lead to better healthcare outcomes on the aggregate, but few of us would favor carving up randomly selected citizens for their organs—even if transplanting these organs could save a larger number of lives.

  The very nature of contemporary society requires a complex, ever-evolving series of trade-offs between rights and duties and between the self and the community. Inevitably, as a result of chance and circumstances, some people are called upon to make greater sacrifices for the well-being of their neighbors than others. Historically, the burden has often fallen most heavily upon those with the least access to political power and social capital. Contemporary medical ethicist and policy makers often find themselves asking: How much sacrifice is too much to demand? And what if individuals refuse to cede rights or interests for the common good? As technology and globalization render the world more interconnected, the answers to these questions grow increasingly important—and often remain elusive.

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  Paid to Not Have Kids

  A nonprofit organization called the Infant Protection Service (IPS) wants to pay women who have been treated for substance abuse $1,000 monthly not to have children until they can demonstrate a year of sobriety. Many addictive drugs, such as alcohol and cocaine, increase the risk of birth defects, and parents who are addicted to drugs often have a hard time maintaining a safe, stable home environment for their children.

  The organization wants to make the program available to all current and former patients of the Stone Cold Institute (SCI), a drug-and-alcohol rehabilitation program that serves low-income residents of New York City. The nonprofit’s staffers ask SCI to allow them to place posters in the facility’s lobby. Those patients who see the posters and are interested will register with the Infant Protection Service and then will take both drug and pregnancy tests every month; those who test negative on both will receive $1,000.

  Is such a program ethical?

  Reflection: The Rights of Substance Abusers

  Although particular narratives related to pregnancy and addiction, such as that of the “crack baby,” may have been exaggerated during the 1980s, few can doubt the serious economic and social cost of significant substance abuse during gestation. Alcohol consumption, for example, is the US’s leading “preventable cause” of both intellectual disabilities and birth defects. Marijuana exposure in utero has been tied to breathing difficulties, poor eyesight, and psychiatric problems. While the frequency of congenital defects due to prenatal cocaine exposure remains in dispute, cocaine use during pregnancy is known to cause premature delivery and attention deficits in offspring. In addition, many addicts lose custody of their kids, relegating these children to foster care. Yet reproduction and parenting are widely regarded as fundamental rights in Western culture—and state efforts to restrict those rights, especially in light of the checkered legacy of the eugenics movement in the US, generally meet with disfavor from both ethicists and the public. As the saying goes, “You need a license to have a dog, but not to have a baby.”

  In 1997, California mother Barbara Harris—who had already adopted four children from a crack-addicted mother—set out to combat this problem. She founded an organization called Children Requiring a Caring Kommunity (CRACK), now known as Project Prevention, whose goal was to pay addicts not to reproduce. Initially, the group offered more money for sterilization via tubal ligation and vasectomy than for the use of long-term birth control, but under pressure, it now pays the same for those who use surgical means as those who opt for intrauterine devices or hormonal therapies.

  Reactions to these efforts range widely. For instance, social worker Attilio Rizzo Jr., of Brookdale University Hospital and Medical Center, described the program to the New York Times as “a godsend” when it first appeared in New York, while the city of Albuquerque welcomed Harris’s volunteers to its jails. In contrast, some advocates for the urban poor and minority women objected to the organization’s efforts to target these populations. Lynn Paltrow, founder of National Advocates for Pregnant Women, told the Times in 2003, “What she’s doing is suggesting there are certain neighborhoods where it is dangerous for some people to be reproducing. It suggests they are not worthy of reproducing. … The Nazis said if you just sterilized the sick people and Jews you would improve the economy.” Similar controversy greeted Project Prevention when it spread to Great Britain in 2010.

  Harris sees herself as a crusader against child abuse. Critics argue that she has chosen the wrong target: that she should improve the lives of these addicts or help them overcome their addictions, but not coerce them into not having children.

  In the case of the Infant Protection Service, the nonprofit appears to be striving to find a balance between these two approaches. By paying women both to stay sober and to postpone pregnancy, it appears to be incentivizing sobriety in the short term in order to prepare these women for childbearing and rearing in the future. Of course, giving women prone to addiction $1,000 to remain sober may prove self-defeating. One cannot help wondering how many of IPS’s beneficiaries would truly remain substance-free at the end of a year.

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  “They Tried to Make Me Go to Rehab”

  Clay suffers from severe alcoholism. He has lost his job as an attorney, and his family will not speak to him unless he obtains treatment. He is living on the streets, where he uses the money that he panhandles from strangers to purchase liquor. He has been taken by ambulance to the emergency room on forty-two nights in the last three months after being found passed out on the sidewalks under the influence of alcohol. There he has slept off his intoxication and departed in the morning after telling the ER doctors that he plans to continue drinking.

  On several occasions, he has suffered seizures and required expensive weeklong hospitalizations—paid for by the state’s i
nsurance program for the poor. Clay turns down referrals to alcohol rehabilitation programs and even a list of Alcoholics Anonymous meetings. He states: “I don’t want to quit. I like drinking.”

  One of the physicians at the hospital, Dr. Martha Livingston, finds it frustrating that thousands of dollars of taxpayer money are squandered providing care to Clay. She wants the municipality to pass a law allowing chronic alcoholics—defined as anyone brought to the hospital intoxicated more than ten times in thirty days—to be forcibly sent to a three-month rehabilitation program.

  Should the municipality enact such a law?

  Reflection: Drug Court

  Alcohol and drug use are implicated in a significant portion of emergency room visits in the United States, including approximately half of all admissions to trauma centers. According to the US Department of Health and Human Services, more than two million such visits occur annually. Many of these visits are accounted for by chronic substance abusers, who present to hospitals repeatedly in states of intoxication. Their bills are generally either paid for by the taxpayers, through Medicaid, or swallowed as charity care by hospitals. Many insurers are permitted by state laws to refuse payment for alcohol-related emergency services.