The Future of Reproductive Autonomy

Several years ago, the Hastings Center ran a project to understand why fertility patients are more likely than other US women to give birth to twins, triplets and higher order multiple births, and to suggest policies and practices to reduce those high multiple birth rates. More than once during a project, we were told that clinicians were just doing what women wanted: women sought out treatment options associated with higher multiple birth rates and they were happy to get pregnant with multiples, especially twins. Changes to policies and practices risked infringing on women’s reproductive autonomy. Yet we find this explanation hard to square with the project’s findings. We learned that the choices of many US fertility patients about which kinds of fertility treatment to use and how aggressively to use them —whether that treatment be ovarian stimulation followed by insemination or in vitro fertilization (IVF) —are heavily constrained by financial concerns, such that they have significant incentives to maximize their changes of pregnancy on each and every insemination or embryo transfer. In addition, fertility treatments are physically and emotionally arduous, the risks of twin pregnancies and births are poorly communicated, and the fertility industry is fiercely competitive, with success measured by rates of live births following each treatment cycle. In the face of these financial and emotional pressures—and in light of clinic’s incentives to maximize their success rates—what did it mean to say that women “want twins?”¹

In our current project on the future of prenatal testing, we encounter clear examples of failures to respect women’s reproductive autonomy stemming both from established law and policy and individual provider practices: when testing isn’t offered to certain demographics of women, for instance, or when the choices of women to terminate or continue pregnancies are prohibited or otherwise not supported. But this project also raises puzzles for reproductive autonomy. We have learned that some clinicians and patients do not discuss the fact that prenatal testing can lead to a decision about whether to terminate a pregnancy—they just don’t talk about it.² And while the decision whether to agree to prenatal screening and diagnostic testing is to be made with women’s free and informed consent, many screening tests have been routinized in such a way that some women do not even recall agreeing to testing, while others feel that agreeing to testing is what their clinicians expect of them, or is necessary to protect themselves and their families from the significant financial hardship of raising a child with a disability.³ In the face of these pressures, can one really say that women are freely choosing to undergo testing or are freely choosing to continue or terminate a pregnancy following receipt of test results? Acknowledging the reality of these pressures is requiring us to consider expanding the scope of our investigation beyond the clinical encounter to the broader context—it is forcing us to think harder about what reproductive autonomy means and how best to enhance it.

A. Autonomy in Bioethics

For students of bioethics, the term autonomy is most familiar as one of the four principles of biomedical ethics, along with justice and beneficence (sometimes differentiated into beneficence and nonmaleficence). We generally use the shorthand “autonomy”, but when it was initially articulated in the 1979 Belmont Report on research with human subjects, the full principle was labelled “respect for persons.”⁴ The Report differentiated between acknowledging the autonomy of persons who are “autonomous agents” and protecting those with “diminished autonomy.”⁵ Autonomous agents are defined with reference to specific capacities—the ability to deliberate about one’s personal goals and the ability to act on the basis of that deliberation. We show respect to autonomous persons by giving “weight to their considered opinions and choices” and by “refraining from obstructing their actions unless they are clearly detrimental to others.”⁶ In other words, if people have the capacity to deliberate about and act on their goals and values, we should generally let them do so—whatever we might make of their choices; we should, in most cases, get out of their way.

The idea was not revolutionary. Paternalism in medicine had been dying a slow death for decades, as evidenced by court cases,⁷ the Nuremberg trials, and broader societal trends focused on equality and individual rights. Still, inclusion of respect for persons as the first basic ethical principle in the Belmont Report was a necessary and significant sign of the ascendency of individualism in medicine.

In practice, respect for autonomy is closely associated with the need for securing voluntary and informed consent before proceeding with medical interventions or enrolling subjects in research. In this way, it is primarily encountered as a negative right—a right of persons to be free from unwanted or unauthorized medical interventions. But it also extends to a right not to be obstructed from accessing available medical care, where that medical care ranges from contraception and abortion, to prenatal testing, to fertility preservation.

This kind of understanding of autonomy—one that emphasizes negative rights—can be very welcome in reproductive contexts, including when a woman seeks access to contraception or abortion, or is threatened with involuntary sterilization. Yet it also has its critics, including several other authors in this Special Report. As Louise King considers, a bald, hands-off approach to autonomy can sometimes have the effect of abandoning patients at just the moment when they most need guidance and advice. And as Kimberly Mutcherson argues, a hands off, negative rights approach can be insufficient to support a right as fundamental as the right to procreate, leading her to argue for a positive legal right to financial assistance for assisted reproductive technologies.

We agree that a negative rights based, “get out of my way” approach to autonomy, and by extension to reproductive autonomy, can lead us to fail to recognize, let alone address, some of the myriad factors that can constrain reproductive decisions. We can thereby miss opportunities—perhaps even shirk obligations—to enable and to strengthen reproductive autonomy. For many women, the principle of respect for autonomy has the potential to transform their lives, promising them control over whether and when to get pregnant, whether to continue pregnancies, how many children to have, as well as how they will give birth and care for their babies. Yet we realize that control can be extremely difficult, because a great distance can separate freedom from unwanted intervention from access to the means to fully actualize one’s reproductive choices. That distance is the subject of this essay.

In what follows, we will briefly trace the development of the idea of reproductive autonomy—the idea that people, most often women but increasingly men and transgender people, should have significant—almost unfettered—“self-rule” in regards their reproductive capacities and reproductive decisions. We will survey the shortcomings, or limitations, inherent in various understandings of this and related concepts over the past half century. We will then argue for a rich and nuanced understanding of reproductive autonomy, one that is broad in its ambit and plays close attention to context—what we will call “reproductive autonomy worth having”. This richer understanding of reproductive autonomy will, at times, require that individuals and groups provide support and services so that people can act in accordance with their considered decisions.

This kind of reproductive autonomy does not widely exist in the US, nor in many other countries. Achieving it is will not be easy. There are a variety of shiny objects (including new technologies) that could distract us along the way, as well as persistent inequalities and other ugly truths that are so difficult to address that they could cause us to give up on working for “reproductive autonomy worth having”. While the hard won victories of the negative rights approach to reproductive autonomy must be defended, the richer and fuller understanding of the good that reproductive autonomy can bring must also be pursued. This is the unfinished business of reproductive autonomy.⁸

Before continuing, we must acknowledge that in this paper we draw heavily on scholarship about, and examples relevant to, women’s reproductive autonomy. We say little about how reproductive autonomy might play out for men or transgender people. While much of what we say applies to all people, we agree that more work is necessary to fully understand and realize reproductive autonomy.

B. The Evolution of Reproductive Autonomy

A constellation of terms surround the idea of reproductive autonomy, including reproductive choice, reproductive rights, procreative liberty, and reproductive justice. These terms are not identical in meaning, scope, or impact. Yet they all begin with a core idea: that reproduction is a significant undertaking and that having or lacking some degree of control over it can change the lives of individuals, families, and societies.

The concept owes much to earlier political struggles for women’s suffrage and women’s rights, as well as to movements focused on limiting population growth through access to contraception and abortion. A goal in these early movements was for women to be able to avoid “coerced reproduction” by being allowed to control their reproductive capacities. This control primarily took the form of preventing or terminating unwanted pregnancies.⁹ Early writing on reproductive autonomy focused on the importance of enabling women to decide “whether or not to have sex, whether or not to have children, the number and spacing of children, and whether or not to carry a pregnancy to term.”¹⁰ Because women often lacked the legal right to control their bodies in these ways, addressing these goals initially entailed a focus on securing negative rights—that is, securing for women the legal right to be allowed to decline sex, to access available forms of contraception and abortion, and to decline sterilization.

In the US, birth control was legal until the late 19^th century when so called Comstock Laws were passed to prohibit distribution and use of contraceptives and related educational materials. In response, political radicals including Margaret Sanger founded the birth control movement in 1914 to fight for the legalization of contraceptives and for education and assistance in family planning. By the second half of the 20^th Century, legal issues around access to contraceptives and abortion were seemingly resolved following US Supreme Court decisions in first Griswold v. Connecticut¹¹ and then Roe v Wade,¹² although as we will discuss, fuller demands of reproductive autonomy were not met by those cases alone—and the negative rights granted in those cases have been compromised by subsequent judgements and state-based laws.

At the same time, attention in the US turned from government interference in the right not to reproduce (a right promoted through access to contraception and abortion) to government interference in the right to reproduce—specifically as the result of forced sterilization. American states had undertaken concerted programs in forced sterilization as part of the eugenics movement in the late 19^th and early 20^th centuries, resulting in sterilization of more than 65,000 people.¹³ Although sterilization programs had initially been affirmed by the US Supreme Court in the 1922 case of Buck vs. Bell, their legality was undermined in 1942 with the decision in Skinner v. State of Oklahoma, which recognized reproduction as a fundamental right that was infringed by compulsory sterilization (although rates dropped dramatically following Skinner, compulsory sterilizations of certain classes of persons were still legal and continued in the US until 1981).¹⁴

By the 1960s, the legality of abortion was a major battle ground. It was at this time that the term “reproductive autonomy” began to appear in the legal literature, cited in amicus briefs defending women on trial for murder after abortions.¹⁵ Although the term was not used in the pivotal 1974 case of Roe v. Wade (that case rested on the concept of personal liberty guaranteed by the US Constitution’s Due Process Clause), it was used over the next few decades to refer to both the right to reproduce and the right to control reproduction—or as one court optimistically put it in 1980: “reproductive autonomy includes the entire decisional range,” meaning “both the decision to bear children, as well as the decision not to bear children.”¹⁶ While this use of the term sounds all encompassing, the understanding was limited because even across this so called “entire decisional range,” recognition of reproductive autonomy was recognition of a negative right—a right not to be prevented from accessing contraception or abortion, and a right not to be forced to undergo sterilization. There was no legal recognition of a positive legal right requiring any actor, including a federal or state government, to provide women with access to the technologies or services necessary for them to exercise their reproductive autonomy.

In so far as birth control, abortion, and sterilization are technologies, we can see that the reproductive autonomy discussion already involved—and was responsive to—technology. That responsiveness increased with the introduction in the later 20^th century of assisted reproductive technologies. These technologies offered new ways to reproduce, including using donor sperm, surrogate mothers, in vitro fertilization, and eventually donor embryos and eggs. As medicine began to offer these reproductive services, questions were raised about their legality, their morality, and about who—if anyone—ought to be allowed to access them.

In 1983, law professor John Robertson began using a new term—procreative liberty¹⁷—to argue for a set of freedoms related to assisted reproductive technologies. In constructing procreative liberty, Robertson recognized the importance of the negative rights already established, which protected the freedom to avoid conception and childbirth—what he called “the freedom to have sex without reproduction.” But he argued that this freedom “is not the only aspect of reproduction that needs legal protection. Another essential element of procreative freedom is the right to become pregnant and to parent….the freedom to reproduce when, with whom, and by what means on chooses.”¹⁸ This “freedom to reproduce without sex” was to be captured by procreative liberty.¹⁹

An extension of reproductive freedoms to include procreative liberty was needed, Robertson maintained, because “the interests and values supporting the right to reproduce by sexual intercourse extend to external conception and the need to contract with donors, surrogates, and physicians for the creation, gestation, and rearing of children.”²⁰ Assisted reproductive technologies serve the same good as sexual reproduction, Robertson argued, and those goods ought to be accessible to a similarly full range of persons. In the decades that followed, he developed and used the concept to argue against a variety of proposed and actual limits on fertility services, including laws against surrogacy and restrictions on access by single women, lesbians and gay men.²¹

Robertson’s procreative liberty had two limits. He explicitly focused it on contexts where reproduction occurs with the help of medical interventions.²² He lists decisions such as whether the father may be present at the birth, whether midwives may assist in births, or whether childbirth can occur at home as examples of decisions that fall outside the freedoms protected by procreative liberty. This demarcation is fairly arbitrary, however, and has been criticized on that basis.²³ In addition, Robertson’s procreative liberty was primarily an argument against intervention and not for assistance (although he initially referred to it as a positive rights approach, procreative liberty is primarily an argument against limits).²⁴ It largely failed to attend to context, and specifically to the contextual factors that limit certain people’s ability to take advantage of or realize the liberty interests he so clearly argues are at stake.²⁵

In many senses, the critiques of late 20^th century understandings of reproductive autonomy and procreative liberty mirror some of the most important critiques of liberal political philosophy more generally. As Canadian law professor Erin Nelson describes in her 2013 book Law, Policy and Reproductive Autonomy “liberal political philosophy has traditionally not been particularly successful at taking into account the ways in which social context and oppression can affect one’s ability to become an autonomous person and to make autonomous choices.”²⁶ She ties this failure to the broad way in which liberalism understands autonomy, permitting choice without a definition or evaluation of such choices.²⁷ Yet such an understanding is both hopelessly limited, often to the point of being willfully blind to the realities of many people’s lives, and grossly unjust. As Nelson points out, understandings of autonomy that fail to attend to context will “undoubtedly result in the denial of meaningful reproductive choice for those who are economically and socially disadvantaged.”²⁸

The next stage in the evolution of reproductive autonomy, then, has been a move to a richer understanding of the link between autonomy and a richer conception of autonomy expanding beyond the focus on securing negative rights to include close attention to the contexts that shape and constrain reproductive decisions. In her 1999 book Killing the Black Body, Dorothy Roberts notes that while Robertson’s approach provides compelling reasons “to ensure the equal distribution of procreative resources in society” it needs to go further.²⁹ There is “no good reason,” she argues, “why our understanding of procreative liberty must adopt a baseline of existing inequalities or why the deepening of those inequalities should not weigh heavily in our deliberations about policies affecting reproduction.”³⁰ She calls for an approach to reproductive rights that explicitly takes social justice into account.

Similar calls for a more contextual approach to reproductive autonomy have been made by feminist scholars including Diana Meyers³¹, Serene Khader³², Catriona Mackenzie³³, and Natalie Stoljar³⁴, who have argued that the capacity for autonomy develops in a social context, which contains long running constraints on women, and particularly on women who are poor, disabled and of color. Indeed, as early as 1985, then US Circuit Court Judge Ruth Bader Ginsburg wrote in an essay on Roe v. Wade, “it is a notable irony that, as constitutional law in this domain has unfolded, women who are not poor have achieved access to abortion with relative ease; for poor women, however, a group in which minorities are disproportionately represented, access to abortion is not markedly different from what it was in pre-Roe days.”³⁵

This orientation—this attention to the relationship between reproductive rights and persistent inequalities—leads us to the “Reproductive Justice” movement. The movement includes groups focused on redefining reproductive rights in ways that center indigenous women, women of color, trans people and other people marginalized by existing reproductive choice frameworks. One activist in this area, Loretta Ross, the cofounder of the SisterSong Women of Color Reproductive Justice Collective, describes the aims of reproductive justice as fighting for the rights (1) to have a child, (2) to not have a child, (3) to parent the children we have and (4) to the “enabling conditions to realize these rights.”³⁶ This fourth point is the transformative and critical component of reproductive justice, especially in comparison with preceding approaches to reproductive autonomy. As SisterSong’s online introduction states “there is no choice when there is no access.”³⁷ Or as the feminist scholar Laura Purdy has written, without “decent health care, education, and alternative ways of supporting themselves”—what she calls “autonomy’s prerequisites”—women cannot have real reproductive autonomy.³⁸

C. Reproductive Autonomy Worth Having

The history of concepts and arguments focused on securing rights, choice, autonomy and liberty around reproduction—an evolution we have very briefly outlined here—is sometimes read as a series of critiques and competing positions. Recognizing and addressing limitations in these concepts has certainly driven scholarship and activism in this area forward. However, we call it an evolution precisely because we understand the work as building on itself, both conceptually and practically. We sit today with a version of reproductive autonomy that is, if not synonymous with, then at least open and responsive to the demands of a reproductive justice framework.

This version of reproductive autonomy has the capacity to be broad in scope and attentive to context, demanding attention to the factors that, following more traditional conceptions of autonomy or liberty, exclude some people from reproductive options. It is a more expansive and more demanding understanding of the work required for reproductive autonomy to be realized (or realizable). It requires those of us in bioethics and medicine to look beyond the clinical encounter to identify the financial, familial, cultural and other pressures limiting people’s reproductive options. Indeed, we would go so far as to say that reproductive autonomy cannot exist without attention to context—to supports, to barriers, to social policy, to social norms. If you live in a country that systematically discriminates against girls, then people will have social pressure to “choose” against baby girls—their choice to select a male embryo or abort a female fetus might be an informed choice, but we must ask whether that decision represents real autonomy. Similarly, in a country that discriminates against people with disabilities, or that fails to support those people and their families, decisions about testing for or selecting against disability can be very heavily constrained. Once constraining contextual factors are identified, we can begin to address them, and work to create the preconditions for people to be truly able to act in accordance with their values and priorities—to attain a reproductive autonomy worth having.

Seeking a fuller, justice-orientated, approach to reproductive autonomy is intimidating, in part because it forces scholars, clinicians, and others to face seemingly intractable and in many nations highly politicized problems like poverty, violence, and discrimination. It may have once been possible for those seeking to advance autonomy to appear politically neutral. Ensuring, for example, that pregnant women or IVF patients receive valid information in advance of making medical decisions receives broad political support. But such neutrality may be impossible once we seek to squarely address some of the most important factors driving those decisions, whether those factors be the US’s lack of universal health coverage, its increasingly limited abortion access, inadequate public education, discrimination against queer people, or entrenched economic inequality.

Yet grappling with this fuller understanding of reproductive autonomy is vital to maintaining the integrity of our work and—more importantly—to respecting individuals. An approach to reproductive autonomy that is broad in scope and deeply attentive to context is necessary for a future in which economic and social inequalities continue to shape individual decisions, and a future that includes ever more technologies, such as egg freezing, expanded prenatal testing (including pre-implantation genetic testing), and new and expanded assisted reproductive technologies that promise to expand reproductive choice yet risk imposing their own sets of constraints. This future needs a richer approach to reproductive autonomy, one that understands reproduction to be a contextualized process that extends before and beyond conception, and that works to enable truly free and truly informed decision-making that is, as much as possible, consistent with people’s values and true to their commitments.