Several years ago, The Hastings Center ran a project

Transcription

1 Reproductive Autonomy: Rights and Access for All The Future of Reproductive Autonomy By Josephine Johnston and Rachel L. Zacharias Several years ago, The Hastings Center ran a project to understand why fertility patients are more likely than other women in the United States to give birth to twins, triplets, and higher-order multiples and to suggest policies and practices to reduce those high multiple-birth rates. More than once, those of us running the project 1 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 this explanation is hard to square with the project s findings. These included the fact that the choices of many U.S. fertility patients about which kinds of fertility treatment to use and how aggressively to use them whether the treatment be ovarian stimulation followed by insemination or in vitro fertilization are heavily constrained by financial concerns, such that the patients have significant incentives to maximize their chances of pregnancy for 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 clinics incentives to maximize their success rates what did it mean to say that women want twins? 2 In a project The Hastings Center is now running on the future of prenatal testing, we are encountering clear examples, both in established law and in the practices Josephine Johnston and Rachel L. Zacharias, The Future of Reproductive Autonomy, Just Reproduction: Reimagining Autonomy in Reproductive Medicine, special report, Hastings Center Report 47, no. 6 (2017): S6-S11. DOI: /hast.789 of individual providers, of failures to respect women s reproductive autonomy: when testing is not 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. 3 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 that the testing is necessary to protect themselves and their families from the significant financial hardship of raising a child with a disability. 4 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? The reality of these pressures is requiring us to consider expanding the scope of our investigation beyond the clinical encounter to the broader context to think harder about what reproductive autonomy means and how best to enhance it. Autonomy in Bioethics For students of bioethics, the term autonomy is most familiar as one of the key principles of biomedical ethics, along with justice and beneficence (sometimes differentiated into beneficence and nonmaleficence). In bioethics, we generally use the shorthand autonomy, but when it was initially articulated in the 1978 Belmont Report on research with human subjects, the full principle was labeled respect for persons. 5 The Belmont S6 November-December 2017/HASTINGS CENTER REPORT

2 Reproductive autonomy cannot exist without attention to context to supports, to barriers, to social policy, to social norms. We can then work to create the preconditions for acting in accordance with one s values and priorities. Report differentiated between acknowledging the autonomy of persons who are autonomous agents and protecting those with diminished autonomy. 6 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. Clinicians and others 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. 7 In other words, if people have the capacity to deliberate about and act on their goals and values, then they should generally be left to do so whatever others might make of their choices. Doctors and others 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, 8 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 includes contraception, abortion, prenatal testing, and 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. 9 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. 10 We agree that a negative-rights based, get out of my way approach to autonomy, and by extension to reproductive autonomy, can lead to failures by researchers, clinicians, policy-makers, and others to recognize, let alone address, some of the myriad factors that can constrain reproductive decisions. One 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, and how they will give birth and care for their babies. Yet realizing that control can be extremely difficult because freedom from unwanted intervention can be separated by a great distance 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 people of all genders, should have significant almost unfettered self-rule regarding 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 policy-makers and leaders in the medical profession 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 United States, nor in many other countries. Achieving it will not be easy. A variety of shiny objects (including new technologies) could distract from the effort, and persistent inequalities and other ugly truths that are difficult to address could cause decision-makers 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 SPECIAL REPORT: Just Reproduction: Reimagining Autonomy in Reproductive Medicine S7

3 richer and fuller understanding of the good that reproductive autonomy can bring must also be pursued. This is the unfinished business of reproductive autonomy. 11 Before continuing, we must acknowledge that in this essay 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. The Evolution of Reproductive Autonomy constellation of terms surrounds the idea of reproductive autonomy, including reproductive choice, re- A productive 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. 12 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. 13 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 United States, birth control was legal until the late nineteenth century, when so-called Comstock Laws were passed to prohibit distribution and use of contraceptives and related educational materials. In response, in 1914, Margaret Sanger and other political radicals founded the birth control movement to fight for the legalization of contraceptives and for education and assistance in family planning. By the second half of the twentieth century, legal issues around access to contraceptives and abortion were seemingly resolved following U.S. Supreme Court decisions, first in Griswold v. Connecticut 14 and then in Roe v. Wade 15 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 S8 compromised by subsequent judgments and state-based laws. In the last two centuries, women in the United States experienced government interference not only in the right not to reproduce (a right promoted through access to contraception and abortion) but also 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 nineteenth and early twentieth centuries, resulting in the sterilization of more than 65,000 people. 16 Although sterilization programs had initially been affirmed by the Supreme Court in the 1922 case of Buck v. 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 United States until ) By the 1960s, the legality of abortion was a major battle ground. At this time, the term reproductive autonomy began to appear in the legal literature, cited in amicus briefs defending women on trial for murder after abortions. 18 Although the term was not used in the pivotal 1974 case of Roe v. Wade (which rested on the concept of personal liberty guaranteed by the U.S. 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, [R]eproductive autonomy includes the entire decisional range, meaning both the decision to bear children, as well as the decision not to bear children. 19 While this use of the term sounds all-encompassing, the understanding was limited because, even across this entire decisional range, reproductive autonomy was understood as 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. Insofar as birth control, abortion, and sterilization are technologies, the reproductive autonomy discussion already involved and was responsive to technology. That responsiveness increased with the introduction in the later twentieth 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. November-December 2017/HASTINGS CENTER REPORT

4 In 1983, law professor John Robertson began using a new term, procreative liberty, 20 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. 21 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 one chooses. 22 This freedom to reproduce without sex was to be captured by procreative liberty. 23 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. 24 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. 25 Robertson s procreative liberty had two limits. He explicitly focused it on contexts where reproduction occurs with the help of medical interventions. 26 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. 27 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. 28 It largely failed to attend to context and, specifically, to the contextual factors that limit the ability of some people to take advantage of or realize the liberty interests he so clearly argues are at stake. 29 In many senses, the critiques of late-twentieth-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. 30 She ties this failure to the broad way in which liberalism understands autonomy, permitting choice without a definition or evaluation of such choices: A political system based on a conception of autonomy that is primarily concerned to ensure that people have choices, but that is reluctant to spell out too many conditions as to evaluating the genuineness of those choices, will generally be satisfied as long as choices are present. From a traditional liberal point of view, as long as neither men nor women are coerced into reproducing, or sterilized without their consent, or prohibited from choosing technological means of reproducing, all is well. 31 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. 32 The next stage in the evolution of reproductive autonomy, then, has been a move to a richer understanding of autonomy, expanding beyond the focus on securing negative rights to include close attention to the contexts that shape and constrain reproductive decisions. In the 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. 33 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. 34 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 Meyers, Serene Khader, Catriona Mackenzie, and Natalie Stoljar 35 who have argued that the capacity for autonomy develops in a social context that contains long-running constraints on women, and particularly on women who are poor, disabled, and of color. As early as 1985, then U.S. Circuit Court Judge Ruth Bader Ginsburg, discussing Roe v. Wade, wrote, 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. 36 This orientation this attention to the relationship between reproductive rights and persistent inequalities SPECIAL REPORT: Just Reproduction: Reimagining Autonomy in Reproductive Medicine S9

5 has led 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 to have a child, not to have a child, to parent the children we have, and to the enabling conditions to realize these rights. 37 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. 38 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. 39 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 because we understand the work as building on itself, both conceptually and practically. Today, society has 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 or 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 does that decision represent real autonomy? Similarly, in a country that discriminates against people with disabilities S10 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, bioethicists, clinicians, and policymakers 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-oriented 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. Perhaps at one time those seeking to advance autonomy could appear to be politically neutral. There is broad political support, for example, for ensuring that pregnant women or IVF patients receive valid information in advance of making medical decisions. But such neutrality can be impossible as scholars, clinicians, and others seek to squarely address some of the most important factors driving those decisions, whether those factors be the United States 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 persons. 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 preimplantation 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 based in an understanding of reproduction as a contextualized process extending 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. 1. Hastings scholars Josephine Johnston and Michael Gusmano, with Pasquale Patrizio from the Yale Fertility Center, led the project, from 2011 to J. Johnston, M. K. Gusmano, and P. Patrizio, Preterm Births, Multiples, and Fertility Treatment: Recommendations for Changes to Policy and Clinical Practices, Fertility and Sterility 102, no. 1 (2014): L. Parham, M. Michie, and M. Allyse, Expanding Use of cfdna Screening in Pregnancy: Current and Emerging Ethical, Legal, and Social Issues, Current Genetic Medicine Reports 5, no. 1 (2017): November-December 2017/HASTINGS CENTER REPORT

6 4. J. Johnston, R. M. Farrell, and E. Parens, Supporting Women s Autonomy in Prenatal Testing, New England Journal of Medicine 377 (2017): National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research (1978; Washington, D.C.: U.S. Government Printing Office, 1979). 6. Ibid., part B Ibid., part B In the United States, these cases began with Schloendorff v. Society of New York Hospital 105 N.E. 92 (N.Y. 1914). 9. L. P. King, Should Clinicians Set Limits on Reproductive Autonomy?, Just Reproduction: Reimagining Autonomy in Reproductive Medicine, special report, Hastings Center Report 47, no. 6 (2017): S50-S K. Mutcherson, Reproductive Rights without Resources or Recourse, Just Reproduction: Reimagining Autonomy in Reproductive Medicine, special report, Hastings Center Report 47, no. 6 (2017): S12-S L Purdy, Women s Reproductive Autonomy: Medicalization and Beyond, Journal of Medical Ethics 32, no. 5 (2006): E. Nelson, Law, Policy and Reproductive Autonomy (Portland, OR: Hart Publishing, 2013). 13. F. Naa-Adjeley Adjetey, Reclaiming the African Woman s Individuality: The Struggle between Women s Reproductive Autonomy and African Society and Culture, American University Law Review 44 (1994): , at Griswold v. Connecticut, 381U.S. 479 (1965). 15. Roe v. Wade, 410 U.S. 113 (1973). 16. D. J. Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity (Cambridge, MA: Harvard University Press, 1985). 17. Skinner V. Oklahoma Ex Rel. Williamson, 316 US 535 (1942). 18. F. A. Seidenberg, Submissive Majority Modern Trends in the Law Concerning Women s Rights, Cornell Law Review 55 (1969): , at Margaret S. V. Edwards, 488 F. Supp. 181 (1980). 20. J. A. Robertson, Procreative Liberty and the Control of Conception, Pregnancy, and Childbirth, Virginia Law Review 69, no. 3 (1983): Ibid., Ibid. 23. Ibid. 24. J. A. Robertson, Noncoital Reproduction and Procreative Liberty, Southern California Law Review 59 (1986): , at J. Robertson, Embryos, Families, and Procreative Liberty: The Legal Structure of the New Reproduction, Southern California Law Review 59 (1985): , at 939; J. A. Robertson, Procreative Liberty and Harm to Offspring in Assisted Reproduction, American Journal of Law & Medicine 30, no. 1 (2004): J. A. Robertson, Children of Choice: Freedom and the New Reproductive Technologies (Princeton, NJ: Princeton University Press, 1996), L. M. Purdy, What Feminism Can Do for Bioethics, Health Care Analysis 9, no. 2 (2001): ; E. Nelson, Law, Policy and Reproductive Autonomy (London: Bloomsbury Publishing: 2013). 28. Nelson, Law, Policy and Reproductive Autonomy. 29. D. Roberts, Killing the Black Body: Race, Reproduction, and the Meaning of Liberty (New York: Vintage Books, 1997); L. M. Purdy, Women s Reproductive Autonomy: Medicalization and Beyond, Journal of Medical Ethics 32 (2005): Nelson, Law, Policy and Reproductive Autonomy, Ibid. 32. Ibid. 33. Roberts, Killing the Black Body, Ibid. 35. C. Mackenzie and N. Stolijar, Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self (Oxford: Oxford University Press on Demand, 2000; S. Khader, Beyond Autonomy Fetishism: Affiliation with Autonomy in Women s Empowerment, Journal of Human Development and Capabilities 17, no. 1 (2016): ; D. T. Meyers, The Rush to Motherhood: Pronatalist Discourse and Women s Autonomy, Signs: Journal of Women in Culture and Society 26, no. 3 (2001): R. B. Ginsburg, Some Thoughts on Autonomy and Equality in Relation to Roe v. Wade, North Carolina Law Review 63 (1984): , at L. Ross, What Is Reproductive Justice?, in Reproductive Justice Briefing Book: A Primer on Reproductive Justice and Social Change, (2007), Justice%20Briefing%20Book.pdf, pp. 4-5, at SisterSong Women of Color Reproductive Justice Collective, What Is Reproductive Justice?, SisterSong Inc., net/reproductive-justice/. 39. Purdy, Women s Reproductive Autonomy, 287. SPECIAL REPORT: Just Reproduction: Reimagining Autonomy in Reproductive Medicine S11