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Case example
Thirty-year-old Mr. Edward Dawson, an investment manager in a large bank, collapses one afternoon in his office. His assistant immediately calls 911. Emergency medical technicians respond rapidly, recognize that Mr. Dawson is in cardiac arrest, begin cardiopulmonary resuscitation, intubate Mr. Dawson, and transport him to nearby Downtown Medical Center, where he is placed on a ventilator and admitted to the medical intensive care unit. Physical examination and diagnostic imaging reveal that he has suffered a severe anoxic brain injury, and he does not regain consciousness. Eight weeks later, Mr. Dawson’s medical condition is unchanged. A consulting neurologist informs his wife that, although he does not satisfy all of the neurologic criteria for the determination of death, his brain injury is extensive and irreversible. The neurologist explains that it is highly unlikely that Mr. Dawson will ever regain consciousness or the ability to breathe on his own.
Mr. Dawson had been married just four months before this accident. Dr. Milam, his attending physician, offers Mrs. Dawson the option that ventilator support be withdrawn and Mr. Dawson be allowed to die. Mrs. Dawson agrees with this treatment plan, but requests that, before the ventilator is withdrawn, her husband’s sperm be recovered for artificial insemination at a later date. She reports that they had intended to have children in the course of the marriage, and that she would like to fulfill that goal. How should Dr. Milam respond?
Overcoming infertility
Reproduction is, of course, a natural process essential for the survival of any biological species, but not all individual organisms have the ability or the opportunity to reproduce. For most human beings, reproduction is also a life-changing event with great personal and moral significance. People who desire children and who experience difficulty reproducing may therefore seek medical assistance in achieving that goal. Human infertility is, in fact, a relatively common condition. According to a US National Survey of Family Growth conducted between 2006 and 2010, 6 percent of all married women aged 15–44 (1.5 million women) were infertile, where infertility was defined as having been sexually active without using contraceptive measures over the past twelve months and not having become pregnant. In the same survey, 11.5 percent of all men aged 25–44 who were not surgically sterile reported inability or difficulty fathering a child.2
For most of human history, reproduction was possible only through sexual intercourse. Basic biological mechanisms of reproduction in human beings and other animals were not well understood until the nineteenth century, and effective medical mechanisms to control human reproduction, through contraception and assisted reproductive techniques, did not appear until the latter half of the twentieth century.3 The one exception to the recent origin of medically assisted reproduction techniques is the practice of artificial insemination, the introduction of sperm by a syringe or other instrument into the vagina or uterus of a woman. This practice dates back to the early nineteenth century, but it remained controversial well into the twentieth century, and sperm banks enabling artificial insemination with cryogenically preserved donor sperm emerged on a large scale only with the development of effective cryopreservation techniques in the 1970s.4 A variety of other medical and surgical treatments have been developed and disseminated to correct infertility conditions within the past half century. These treatments include medications to stimulate ovulation in women and surgical procedures to repair or replace dysfunctional or diseased reproductive organs in both women and men.
An International Committee for Monitoring Assisted Reproductive Technology (ICMART), convened by the World Health Organization, recently recommended standardized terminology for medical interventions designed to assist reproduction. ICMART recommends the generic term ‘medically assisted reproduction’ (MAR) to refer to reproduction brought about through all of the above-described medical treatments. Also included among MAR techniques, according to the ICMART glossary, are “all procedures that include the in vitro handling of both human oocytes and sperm or of embryos for the purpose of establishing a pregnancy.”5 ICMART reserves the term ‘assisted reproductive technology’ (ART) for the latter group of in vitro procedures.
Probably the most well-known ART is the practice of in vitro fertilization (IVF) followed by embryo transfer (ET). This practice involves four steps: recovery of mature ova from a woman, fertilization of these ova in vitro, culture of the resulting pre-implantation embryos, and placement of these embryos into a woman’s uterus for implantation and gestation. Following decades of research on these steps in animal and human models, Patrick Steptoe and Robert Edwards announced the birth of Louise Brown, the first baby conceived via IVF, in Cambridge, England, in July 1978.6 Although this research and the creation of “test tube babies” were highly controversial at the time of their announcement, IVF and ET are now offered world wide and have resulted in the birth of more than four million babies.7 IVF and ET may be combined with several other medical procedures to enable reproduction in specific circumstances. The use of donor sperm, ova, or embryos in IVF and ET may, for example, allow women to bear children when they or their partners lack viable gametes. Gestational surrogates (also known as surrogate mothers) may bear a couple’s genetic offspring when the female partner is unable to carry a child. Intracytoplasmic sperm injection (ICSI) is a method of in vitro fertilization that allows a male partner with very low sperm counts to father a child. Pre-implantation genetic diagnosis (PGD) of in vitro embryos enables couples at risk for producing a child with a serious genetic disease to select for transfer only embryos that do not carry the disease-producing genes.8 The birth, in Scotland in 1996, of Dolly the sheep, the first mammal conceived by cloning of an adult somatic cell and transfer of the resulting embryo to a gestational surrogate, suggests that reproductive cloning is also a possible method of human reproduction.9
Despite the wide availability of ARTs today, critics continue to pose moral questions about their use in a variety of situations. The most sensational recent example was the 2009 case of Nadya Suleman, nicknamed “Octomom” in the extensive international media coverage of her story.10 Suleman, an unemployed single mother of six children conceived through IVF, requested transfer of twelve additional frozen embryos at one time, and Dr. Michael Kamrava, her fertility specialist in Beverly Hills, California, complied with that request. Suleman delivered octuplets in January 2009, the first recorded human case in which all eight octuplets survived the neonatal period. Media coverage of this “medical miracle” quickly gave way to sharp and sustained criticism of the choices and actions of this patient and her physician.11 The American Society for Reproductive Medicine expelled Kamrava from its membership in 2009, and the Medical Board of California revoked his medical license in 2011, finding that he was guilty of gross negligence in his medical treatment of Suleman and of two other patients.12
This chapter will evaluate the use of ARTs by addressing the following three questions:
1. What should be the scope and limits of reproductive freedom?
2. Under what circumstances, if any, may health care professionals conscientiously refuse to provide assisted reproductive services requested by their patients?
3. How, if at all, should societies regulate or limit the use of ARTs?
Unless otherwise indicated, in the rest of this chapter I will use the term ‘assisted reproductive technology,’ or ART, in a broad sense to include all methods of medically assisted reproduction.
The scope and limits of reproductive freedom
As noted above, reproduction is both a basic biological process, and, for very many human beings, a pivotal and highly prized life experience. Having a child, whether planned or unplanned, desired or undesired, is typically a life-altering event. Control over reproduction is thus a central feature of human autonomy, where autonomy is understood as the ability to make important life choices for oneself, based on one’s own desires, goals, and values.
The reasons why many people choose to have children are well known and need little explanation; they include a recognition of the intrinsic value of human life, a desire to experience the distinctive parent–child relationship and to play a central role in nurturing and supporting one’s children to adulthood, an interest in passing on one’s genetic or cultural heritage, or one’s religious or moral values, to one’s children, and a hope for support from one’s children in one’s old age. For some people, reproduction may be accepted as a foreseen consequence of their primary desire for sexual and emotional intimacy with their partners.
There is significant evidence for the acceptance of reproduction as a fundamental human value. For example, the United Nations Universal Declaration of Human Rights, although it does not use the term ‘right to reproduce,’ does state that “Men and women of full age, without any limitation due to race, nationality, or religion, have the right to marry and to found a family.”13 The Declaration on Social Progress and Development, adopted by the UN General Assembly in 1969, is more specific; it asserts that “Parents have the exclusive right to determine freely and responsibly the number and spacing of their children.”14
In the United States, a series of Supreme Court decisions have recognized a constitutional right to privacy in making reproductive decisions.15 Writing for the majority in Eisenstadt v. Baird, Justice William J. Brennan articulated this right as follows: “If the right of privacy means anything, it is the right of the individual, married or single, to be free from unwarranted governmental intrusion into matters so fundamentally affecting a person as the decision whether to bear or beget a child.”16 Another kind of support for reproductive freedom as a fundamental human value or right can be found in the strong repudiation of public eugenics programs of forced sterilization carried out in Nazi Germany and in many US states for much of the twentieth century.17
For most human beings, fulfilling the desire to have children requires only that a heterosexual couple engage in sexual intercourse, that the partners are fertile, and that the female partner be willing to carry a fetus they conceive to delivery. For couples who satisfy these conditions, interfering with their freedom to reproduce would require the highly invasive actions of preventing sexual activity or of forced contraception or abortion. Because we are reluctant, at least in the case of adults, to take these invasive steps to prevent reproduction, the freedom of fertile adult heterosexual couples to reproduce is nearly unlimited.
In contrast, for individuals without sexual partners, and for couples who are infertile or who are gay, having children requires the assistance of third parties, such as health care professionals and gamete donors. For still other couples, sexual reproduction is possible, but it may impose significant burdens or risks on the couple or on their offspring, and so they may also seek assistance in reproduction to avoid these burdens or risks. Despite their inability or reluctance to reproduce without assistance, these individuals and couples may claim that their basic human right to reproductive freedom, including a right to bear children, should be recognized and respected. How should this claim be understood? Is the claim justified? Answers to these questions will be highly significant for decisions about the use of ARTs.
The claim that human beings have a basic right to reproductive freedom, that is, to choose whether or not to have children, can be interpreted in several ways. There is, for example, an important difference between negative and positive rights in this context.18 In general terms, a negative right is understood as a right to freedom from interference with a decision or action. A negative right to reproductive freedom, therefore, would be a right to engage in reproduction-related actions (such as sexual intercourse, fertility treatments, contraception, and abortion) without interference from others. Negative rights create duties of forbearance in other people, that is, duties not to interfere with the actions of the rights-bearers. A positive right, in contrast, is understood as an entitlement to receive a particular good or service or to achieve a particular outcome. Positive rights create duties in others to provide specific services or promote specific outcomes.
To fulfill their desire to reproduce, individual human beings require the assistance of at least one other person, usually a heterosexual partner. Fertile heterosexual couples need only engage in sexual intercourse and carry a pregnancy to delivery, without interference by others, to achieve a desire to reproduce. For these couples, then, a negative right to freedom from interference with their reproductive activity is generally sufficient to achieve their goal (although successful reproduction may also depend on receiving at least basic prenatal health care).
Infertile couples, and individuals without sexual partners, require additional assistance in fulfilling a desire to reproduce. They may engage fertility specialists and gamete donors who are willing to provide ART services for them and claim only a negative right to freedom from outside interference with those activities. Or, they may claim that society should establish a positive right to receive ART services, regardless of their own ability to pay for those services.19 In either case, imposing restrictions on the ability of these individuals and couples to reproduce does not require highly invasive interference with their sexual activity or with the bodily integrity of pregnant women. Rather, it involves imposing restrictions on their use of ARTs or deciding not to subsidize the costs of ARTs for people who cannot afford them. Are such limits justifiable? The answer to this question depends on an assessment of the moral significance of reproduction, including both its benefits and its burdens.
We have already reviewed some of the reasons why people desire to reproduce and the status of rights to reproductive freedom. The strongest advocates of a right to reproduce might argue that reproduction makes such a fundamental contribution to human fulfillment that everyone should enjoy an equal opportunity to have as many children as they desire, by whatever means are available, whether or not they are able to conceive or bear a child or to identify a willing reproductive partner. This assertion seems too strong, however, in the light of egregious examples like the Suleman case. What reasons can be offered for limitation of reproduction by means of ARTs?
At least four kinds of arguments are commonly offered for limiting access to ARTs. The first, and perhaps least persuasive, argument claims that ARTs should not be used because they are “unnatural.” Proponents of this argument observe that ARTs are designed to correct problems in or to supplant the “normal” processes of human sexual reproduction, and they claim that reproduction should occur only by means of those unaided normal processes. On this view, the use of ARTs to enable people without sexual partners, infertile couples, or gay couples to reproduce is an unnatural and therefore immoral practice. This type of argument confronts two problems. The first is defining what is meant by the term ‘natural’ or ‘normal.’ In one sense, for example, most if not all medical treatments, including drug therapy and surgery, correct or supplant natural physiologic processes, and so the boundary between the “natural” and the “unnatural” is not at all obvious. Even if that boundary were obvious, however, it is not clear why it should be morally significant. Suppose, for example, that the normal physiologic processes of aging in human beings include significant dementia beginning in the seventh or eighth decade of life. That fact should not, I submit, incline us to view dementia in the elderly as a morally beneficial or welcome condition; rather, we should pursue medical treatments to prevent or treat dementing conditions whenever they occur.
A second, and much more substantive, type of argument for limiting access to ARTs appeals to the fact that ARTs can endanger the health and welfare of pregnant women and children. Several different kinds of risks can be identified. One is that ART procedures can inflict significant physical injury on women and children. A clear risk of in vitro fertilization and embryo transfer, for example, is the fact that simultaneous transfer of multiple embryos often results in high-order multiple pregnancies, that is, pregnancies of triplets or higher numbers of fetuses. These high-order multiple pregnancies are much more likely to result in premature delivery, with greatly increased risks of maternal mortality and of infant death or severe impairment.20 The Medical Board of California concluded that Dr. Kamrava was grossly negligent in transferring twelve embryos to Ms. Suleman because of the foreseeable consequence of a high-order multiple pregnancy and the resultant grave risk of harm such a pregnancy would pose to his patient and to the children she bore.21
Another potential risk of harm to children cited by some commentators is that of parental abuse or neglect. Like adoption agencies, fertility clinics have an opportunity to assess the ability of prospective parents seeking assisted reproductive services to provide a safe and nurturing environment for children.22 If Ms. Suleman had sought to adopt another child, rather than pursue IVF in 2008, for example, the fact that she was a single and unemployed mother of six minor children would almost certainly have resulted in rejection of her application for adoption. Since adoption agencies are required to screen prospective parents in order to protect the children in their care, it may be argued that fertility clinics should also be required, before they provide assisted reproductive services, to screen prospective parents and to refuse services to patients who would be unable to provide adequate parental care.
A third type of argument for limiting access to ARTs is based on a concern that patients can use ARTs to “hijack” social resources by producing multiple children, often in a single pregnancy, who will be dependent on social welfare programs for their well-being. This argument does not assert that children themselves will be endangered by the failure to meet basic needs like food or shelter, since they will receive public services to meet those needs, but rather that it is unjust for parents to bear children whom they cannot support and to rely on public resources for that purpose. Once again, the Suleman case is commonly cited as an example of this unjust reliance on public resources, since Suleman’s fourteen children have received significant public welfare benefits from the state of California.23
Finally, some critics view the destruction of “leftover” embryos as a morally significant harm of IVF and ET.24 In IVF, it is common practice to create more pre-implantation embryos than will be transferred at a single time. “Leftover” embryos are frozen and stored for possible transfer in the future, in the event that the first-transferred embryo or embryos fail to implant or abort spontaneously. If the first cycle of IVF and ET is successful, the couple may choose not to transfer the remaining embryos, and those embryos are usually destroyed. For those who view all living human organisms from the time of conception as having full and equal moral status, the annual destruction of thousands of leftover pre-implantation embryos is a grave moral transgression.
If any of the above arguments provides sufficient reason to limit access to ARTs, that conclusion raises at least two additional questions: How should access to ARTs be limited? Who should impose limitations on ARTs? The rest of this chapter will address those questions.