Autonomy in Tension: Reproduction, Technology, and Justice

Respect for autonomy is a central value in reproductive ethics, but it can be a challenge to fulfil and is sometimes an outright puzzle to understand. If a woman requests the transfer of two, three, or four embryos during fertility treatment, is that request truly autonomous, and do clinicians disrespect her if they question that decision or refuse to carry it out? Add a commitment to justice to the mix, and the challenge can become more complex still. If insurance policies cover the costs of medical interventions to return an injured person to near full health or to give to a disabled person an ability, such as hearing, that they did not otherwise have, is it unfair for policies to exclude from coverage the costs of giving fertility to those who lack it, or restoring fertility in those who have lost it? What does “just reproduction” look like in the face of multifarious understandings of both justice and autonomy, and in light of increasingly complex and costly reproductive technologies, the use of which allows prospective parents to control who could and could not be born?

We exist at moment in the dialogue surrounding reproduction, medicine, and ethics when old ethical issues—such as whether women ought to be allowed to access pregnancy termination—are more contested than they have been in decades, at the same time as new technologies—such as gene editing of human embryos—suggest that our species could face unprecedented questions about who should exist. As we considered the discussions accompanying these issues and contemplated a special report responding to them, we found ourselves consistently circling back to two ethical commitments: respect for autonomy and justice. As Cristie Cole will consider in her essay in this report, should anyone other than the person involved decide whether uterus transplants are an available medical treatment? And as Michele Goodwin asks, why should some women receive help to establish a pregnancy while others are thrown in jail when they miscarry or their child is stillborn? Respect for autonomy is required where individuals have the ability to make fully informed and voluntary choices. Yet, does respecting autonomy require acceding to all the choices of patients or consumers of medical care? We consider these and related questions in this special supplement of the Hastings Center Report.

The closely linked concepts of reproductive autonomy and reproductive rights developed in tandem with the emergence in the twentieth century of new medical technologies, first that could safely prevent or end pregnancies and later that could safety create them. In America, induced abortion had become safer than childbirth by the 1930s, about the same time that condoms, which had existed in some form for centuries, as well as tubal ligation and vasectomy, became reliable and widely available. A decade earlier, the first sperm bank had opened in Iowa, for use in intrauterine insemination (IUI), although it was not until 1978 that the first baby was born from an egg that had been extracted from a woman’s body and fertilized in a dish.

All these technologies, some of which could be bought and sold on the open market but most of which required the assistance of a clinician, brought reproduction from the private realm into the public sphere, where it was subject to laws, policies, and the norms of clinical practice. Women, and to a lesser extent men, found that they could not necessarily gain access to these technologies if their physicians or their lawmakers believed that they should not be helped to prevent procreation, or that they should not be helped to become parents. (The proceeding sentence does not intend to exclude the experiences of transgender people, for whom barriers to reproductive technologies are further still.) Reasons for these restrictions included that the individuals concerned were not deemed worthy of assistance or that the interests of others, from future children to broader society, superseded the choices that individuals might wish to make. As several essays in this supplement illustrate, while a few of the questions around access to or protection from these technologies have been more or less resolved—compulsory sterilization, for example, is seldom applied to anyone anymore—many remain contested today. Important touchstones in these debates are justice, in particular a commitment to treating persons fairly, and respect for autonomy, although as these essays illustrate, it is not always clear how best to achieve either.

How Reproductive Technologies have Emerged and Raised Puzzles for Autonomy

Researchers have attempted to develop assisted reproductive technologies (ARTs) for centuries. Research on intrauterine insemination (IUI) preceded in vitro fertilization (IVF), with the first documented case of the former first occurring with dogs in London in the 1770s (Ombelet and Van Robays, 2015). (Tales exist that suggest an impetus for IUI may have been powerful and infertile rulers of the middle ages.) The work of J Marion Sims in the mid-19^th century is particularly controversial. Some literature has highlighted that his work represented a shift from a focus on male infertility (as approached by IUI) to female diseases, which would open the door to the field’s later focus on IVF and technologies aiding many broader conceptions of infertility(Ombelet and Van Robays, 2015). Others, however, remind us that much of Sims’ research was done with enslaved African American women, a topical issue at the time of writing as statues of Dr. Sims are a few of many embroiled in debates about the best place for monuments of people once engaged in promoting slavery (Trump, 2017).

Early mammalian studies paving the way for IVF and embryo transfer (ET) began in the late 1800s, with the first human studies occurring throughout the first half of the 20^th century (Fasouliotis and Schenker, 1999). Clinical IVF showed promise in research emerging throughout the 1950s and 60s, but was stifled by issues with oocyte retrieval (Fasouliotis and Schenker, 1999). In 1976, English physicians Patrick Steptoe and Robert Edwards utilized their own novel techniques - laparoscopy for oocyte retrieval, in vitro fertilization of oocytes and in vitro maturation of embryos into blastocysts – and reported a tubal ectopic pregnancy resulting from IVF.

In 1978, Steptoe and Edwards transferred an eight-cell embryo into the uterus of Lesley Brown leading to the birth of Louise Brown, first human baby born following IVF (Liu, 1991). The next few years saw several more IVF babies born around the world, including the first American, Elizabeth Jordan Carr, in 1981, and the first twins in 1982 (Kamel, 2013). The first delivery following IUI occurred the same year (Kamel, 2013). ARTs have made immense advances in the four decades since Louise Brown’s birth, including to better understand the endocrinal mechanisms surrounding egg development and to develop ways of testing early embryos for genetic conditions. Despite these medical advances, ovarian stimulation with or without IVF is an arduous process that carries some serious medical risks. In the US, where public insurance does not cover ART and private insurance coverage is often extremely limited, patients may struggle to afford treatment. The financial burden of IVF can encourage practices such as multiple embryo transfer, placing questions of safety and efficacy in contact with fundamental issues of autonomy, free choice, and access.

The 1970s also saw advances in the science of prenatal testing and diagnosis. While amniocentesis was first used to identify genetic disorders in the 1950s, ultrasound was the clinical standard for detecting and assessing fetuses throughout the late 1960s and early 1970s. In the early 1970s, amniocentesis was first used in the United States. In 1983, Chorionic villus sampling was first performed. These tests allowed prospective parents to learn in the first or early part of the second trimester of pregnancy whether their fetus had trisomy 21 or a handful of other chromosomal conditions, as well as determining fetal sex.

In 1990, the marriage of prenatal testing and ART first occurred with the polar body biopsy for genetic diseases conducted on preimplantation embryos (Kamel, 2013). In 1995, researchers reported the first case of aneuploidy screening in preimplantation embryos before their transfer, looking specifically at the X, Y, 18^th and 16^th chromosomes (Kamel, 2013). The first unaffected pregnancy following preimplantation genetic diagnosis (PGD) occurred in 1999, and comparative genomic hybridization and polar body testing through PGD for chromosomal aneuploidy was first performed in 2002 (Kamel, 2013). Today, PGD can be offered as a part of standard IVF care, and allows for embryos to be selected for implantation that do not have specific monogenetic disorders in addition to chromosomal aneuploidies. PGD technologies offer a considerable amount of added choice to the IVF and reproductive process, and can, as Louise King discusses in her essay, provide patients with an unexpected opportunity to choose the sex of the embryo to be transferred. Does this additional choice enhance their autonomy?

When IVF was introduced in the 1970s, its primary patients were married women with fallopian tube blockages or damage. The marriage requirement was imposed by the United States’ Department of Health, Education and Wellness’ Ethics Advisory Board, which released a report finding research on IVF and embryo transfer ethically permissible if the egg and sperm donors were married (United States Department of Health, 1979). In the four decades since, the influence of the EAB’s recommendations has waned, and that of the American Society for Reproductive Medicine, which issues guidelines and recommendations regarding aspects of fertility medicine, has increased. IVF has expanded medically, legally, and socially to include broader definitions of infertility. People use IVF for a multitude of previously uncontemplated purposes including with PGD to avoid passing on a genetic disease from one or both parents, or to facilitate a cycle with donor gametes or autologous frozen eggs, whether due to being single, in a queer relationship, maternal age, an illness that prevented gamete production.

In America today, the biggest barrier to assisted reproductive technologies is no longer marital status, sexual orientation, or age but cost. The American Society for Reproductive Medicine cites the average cycle of IVF as costing $12,400 (this may not include medications, which could be another $3000-$5000) (American Society for Reproductive Medicine, 2015). Embryo biopsies, freezing and PGD can only add to the cost. Unlike countries with a National Health System, many of which offer some coverage of fertility treatments, including IVF, under public insurance, the United States Medicaid system does not cover any ART (American Society for Reproductive Medicine, 2015). Laws on coverage by private insurers differ from state to state. Only 15 states have passed laws that require insurers to cover or offer coverage for infertility diagnosis and treatment, but a few of these specifically exclude coverage for IVF or other procedures (American Society for Reproductive Medicine, National Conference of State Legislatures, 2014). As such, there are significant cost barriers to ARTs in the United States, namely, for anyone on Medicaid and anyone not able to pay for one (or often several) cycle(s) out-of-pocket that cannot be covered by their insurance. The legal, social, and ethical aspects of this issue will be further explored in several essays in this report, including an essay by Kimberly Mutcherson which argues for positive legal rights on the basis of this justice concern, an essay by Vardit Ravitsky considering the importance and mechanisms of upholding reproductive autonomy in prenatal testing, and an essay by two of us (Josephine Johnston and Rachel Zacharias) which calls for an integration of justice into our conception of reproductive autonomy. It suffices to say that the barriers to ARTs raise significant questions about choice and true autonomy in reproductive medicine in this country.

Due in part to this difference in coverage (and to the difference of markets at large), the regulation and oversight of ARTs has been significantly different in the United States than it has been in National Health System countries such as the United Kingdom. In the US, significant advances have been made in reproductive science, including in the genetic testing of preimplanted embryos created using IVF, that have been promoted by market forces with limited oversight or policy. This is juxtaposed with the regulations offered by the Human Fertilisation and Embryology Authority (HFEA) of the United Kingdom, the impacts of which will be discussed at length in Ruth Deech’s piece in this report.

In the US, fertility medicine has often been described as being delivered in a “boutique” nature, such that patients “shop around” and ultimately are the ones driving their care. This has only further increased with the proliferation of a “direct-to-consumer” trend in medical marketing, which empowers patients to collaborate with their physicians in their care. As a paper by one of us (Louise King) will discuss, in the reproductive medicine space, this could lead to instances in which even the best intentioned provider may find themselves pressured to proceed in a way that conflicts with their medical judgment. What does it mean for us to conceptualize autonomy in a context of patient-driven reproductive medicine? And what effect do sometimes heavy handed marketing strategies have on women’s ability to make rational well informed choices among the ART options? Elizabeth Reis and Samuel Reis-Dennis’ piece in this report considers the ethics of the cost, commercialization, and marketing of egg freezing. They propose that sometimes the addition of new choices, especially in the setting of novel unproven technologies, can have a negative impact on autonomy, putting undue pressure on patients and potentially making them “worse off.”

Reflecting on Autonomy and Justice in Assisted Reproduction, and Beyond

The technologies and techniques of assisted reproduction raise complex questions about how best to understand, respect and promote autonomy. Sustained, serious engagement with these questions has been the work of practitioners, researchers, scholars, and activists since at least the birth of Louise Brown. Yet that work is far from complete. The terrain changes and our values evolve. New social norms around families gain acceptance, ideas about the significance of genetic parentage develop, and new technologies and techniques are developed.

At the time of writing, the most prominent of these technologies is probably the invention of the gene editing tool CRISPR-Cas9, which has supercharged the debate over whether prospective parents ought to be helped to alter the genes of their future children, a desire addressed in Sigal Klipstein’s essay. A technological step in that direction appears to have been taken this summer, when scientists at Oregon Health and Science University reported that they had edited out a gene associated with cardiomyopathy, a heart condition that can be fatal. A related ethics and policy step had occurred several months earlier, when a committee of the US National Academies signaled openness to germline modification for the treatment or prevention of disease, crossing what many had previously considered a hard fast line.

At the same time as these and other technological developments are pushing the boundaries of science and medicine, new attention is being paid to the myriad ways in which our society continues to follow centuries old patterns of oppression and discrimination. In reproductive contexts, these injustices are visible in the juxtaposition between patterns of monitoring and prosecuting pregnant women of color for behaviors that would otherwise not be criminal, while failing to notice the ways in which advantaged women place their pregnancies at risk through their use of reproductive technologies. This comparison is made in Michele Goodwin’s essay. It is as much the work of reproductive ethics to document this differential treatment and to call for changes in law, policy and practice, as it is to attend to the puzzles for autonomy and justice raised by the latest scientific or medical advances. Many of the articles herein presented are provocative in their arguments. While we may not fully agree with every view presented, we hope these articles will spark debate and important discussion in this ever controversial field of study.