Reproductive Autonomy and Regulation-Coexistence in Action

Reproductive Autonomy and Regulation—Coexistence in Action by Ruth d e e c h O n occasion, British in vitro fertilization practitioners look over the ocean to the practice of IVF and embryo research in the United States, wonder why these areas are subject to less regulation than in the United Kingdom, and ask how much less risky and more progressive IVF and embryo research might be if subject to additional federal, or at least state, regulation. To an American audience, imbued with the centuries-old spirit of independence, regulation and autonomy can seem in tension. Indeed, regulation by government is sometimes met with suspicion, as can be seen in the U.S. debates over health care reform. From a British perspective, there is no necessary conflict. There is no dissent in our country from the proposition that individual activities, services, and industries can be regulated and, at the same time, retain and exercise such autonomy as is their right within a safe sphere. For the purposes of this discussion, “autonomy” is understood to mean self-determination. In the medical context, it is respect for autonomy that gives rise to the need for informed consent. In turn, informed consent requires that individuals are free from coercion and have access to reliable information. From 1994 to 2002, I was the chair of the United Kingdom’s Human Fertilisation and Embryology Authority, which regulates the practice of IVF and embryo research. The existence of the HFEA assures patients that safety and aspects of the practice of assisted reproduction are monitored, leaving them free to choose without worrying about danger, in the same way that Ruth Deech, “Reproductive Autonomy and Regulation—Coexistence in Action,” Just Reproduction: Reimagining Autonomy in Reproductive Medicine, special report, Hastings Center Report 47, no. 6 (2017): S57-S63. DOI: 10.1002/hast.797 the public may take only those drugs that have passed health and safety tests. I would propose that anxious and vulnerable patients do not have more autonomy in a less regulated, market-driven profession. The Establishment of the HFEA T he United Kingdom claims a special place in the world of reproductive science: the first IVF baby, Louise Brown, was born in Oldham, near Manchester, England, in 1978. Because of worldwide interest in IVF, a feeling arose that government should take action to demonstrate that scientists could not simply run amok. The government commissioned a report from a committee, chaired by the philosopher Mary Warnock, whose remit was to consider the social, legal, and ethical implications of the developments and to recommend policies and safeguards to put in place. The Warnock Report1 remains to this day the wisest and most pragmatic, farsighted, and influential report of its kind, for the United Kingdom and other countries. It is probably remembered best for the observation that “people generally want some principles or other to govern the development and use of the new techniques. There must be some barriers that are not to be crossed, some limits fixed, beyond which people must not be allowed to go . . . . A society which had no inhibiting limits, especially in the areas . . . of birth and death, of the setting up of families, and the valuing of human life, would be a society without moral scruples. And this nobody wants.”2 Warnock’s conclusion was that this extraordinary new medical development should be permitted but regulated. The U.K. government agreed with the Warnock Report, making it the foundation of the Human Fertilisation and Embryology (HFE) Act 1990, the law SPECIAL REP ORT: Just Rep r o d uc t io n : Reim a gi n i n g Au ton omy i n Re p rod u c ti v e M e d i c i n e S57 that brought into being the HFEA. This body has the flexibility and authority to make decisions on a case-by-case basis as reproductive medicine advances. It set up the most extensive database of its kind in the world, recording treatment outcomes and the identities of gamete donors; monitoring all laboratories and clinics carrying out research and treatment; giving advice to patients, donors, and the government; and approving new treatments and research protocols. The act and the rules of the HFEA apply to all fertility treatments and to research involving embryos or gametes, regardless of the source of funding. One should note the combination of practical and philosophical tasks. I discovered during my chairmanship that it is highly salutary for an ethical body to be faced with the need to make immediate decisions involving real individuals and their health. Typically, on a Friday afternoon, there would be a call from, for example, a surgeon about to operate on a child with cancer. Was it permissible to store a slice of the child’s testicular tissue in order to safeguard him from the fertility-destroying effects of chemotherapy and radiotherapy so that one day there might be a chance that the patient would be restored to fertility by having the testicular tissue reimplanted? No time to call together an ethical body for discussions over months on this new technique; the answer had to be given by interpreting the law. (The answer was yes.) This kind of decision-making differentiates the HFEA from the many ethical bodies in the field of embryology all over the world, most notably in the United States: national bodies that discuss, study, and report but do not have powers to implement. Another important difference is that the HFEA seeks public involvement in general ethical decisions, and it has become apparent that winning public approval is an important step in successful development of innovations in fertility medicine. The HFEA has held extensive public consultation and information sessions; it also gives evidence to parliamentary committees to defend its decisions or when the topics of fertility medicine or embryo research are the subject of parliamentary discussion, as they fairly frequently are. Although I will argue here that fertility patients’ autonomy in the United Kingdom is not constrained by regulation, I acknowledge that their autonomy is often affected by monetary considerations. While the National Health Service provides universal and comprehensive treatment free at the point of delivery, it does not cover cosmetic treatments or some fertility treatments. All U.K. residents may choose to pay additional health insurance for treatment in the private market or private treatment in an NHS hospital. At least 60 percent and up to 80 percent of IVF treatments are funded privately in the United Kingdom, and in an era when the NHS is short of funds, the proportion is likely to rise. Reasons for not funding IVF range from the belief of some government and health service S58 managers that childlessness is not a medical condition requiring treatment to a decision to give funding priority to conditions like cancer or other grave illnesses over fertility treatments. Regulation or None S ome argue that the United Kingdom is overregulated or that there should be no interference at all with people’s efforts to reproduce. Yet interference can be justified, including on the utilitarian ground of preventing harm to others, including future babies. Regulation also gives clinicians a shield against accusations of malpractice and researchers a haven within which to explore promising science, provided they act within the guidelines drawn up by the HFEA under its statutory powers. Regulation has reassured the public that these areas of science and medicine are being responsibly overseen and has reduced commercialism. It has enabled the United Kingdom to speak with authority in international debates and has caused everyone involved in IVF to think about, justify, and monitor his or her research and practice, knowing that they will be visible to the HFEA. The downsides of regulation are that it can be slow and expensive and a barrier to progress (although not always, judging by the record of scientists in the United Kingdom). It has catalyzed constant legal challenges to HFEA decisions, as every disappointed doctor or patient can invoke judicial review litigation and assert the application of (constitutional) human-rights standards. It has resulted in public scrutiny of many HFEA decisions. In these debates, there is frequently a struggle between politicians, churchmen, scientists, clinicians, and the public for dominance, as was notably seen in recent debate over mitochondrial replacement. In spite of or perhaps because of these debates, British regulation has enabled progress to be made in tandem with public acceptance and has created a safe zone for the practitioners and researchers for thirty years.3 Some of the greatest challenges to regulation have stemmed from the law’s welfare requirement. The HFE Act allows any individual to access fertility treatment; there is no need to be under a certain age, married, or heterosexual. But all would-be parents must meet the welfare test laid down in section 13(5). Originally, this provision required clinicians to consider the potential baby’s “need . . . for a father,” which had been a political compromise to avoid requiring marriage as a precondition for treatment. That part of the law was reformed in 2008 to require instead an assessment of the child’s need for “supportive parenting.” The welfare requirement constrains patient autonomy, as it gives clinics permission to deny treatment to someone they assess to be unsuitable.4 The justification for treating fertility patients differently from would-be parents who do November-December 2017/HASTINGS CENTER REPORT Absolute respect for autonomy does not and ought not to exist in the field of fertility. The successful practice of assisted reproduction involves more than just one person or one couple. not ask for assisted reproduction includes that the harm to the rest of society and to the future child outweighs the freedom of the potential parents. This balancing judgment should be compared to similar clinical judgments that are routinely made to determine whether, for example, surgical interventions are wise. The arguments are overshadowed by memories of the restriction on reproductive choice practiced in former decades by states that forbade intermarriage or interracial sexual relations. However, legislators view the “welfare test,” not as eugenics, but as an application of the principle of the paramountcy of the welfare of the child, which applies generally in U.K. child law. In comparison, European regulators note with disapproval the ethical dilemmas that arise from the high number of multiple pregnancies resulting from assisted reproduction, the sale of gametes, commercial surrogacy, and the general market-driven nature of fertility medicine in the United States,5 which has been described as the Wild West of reproductive practices.6 A patchwork of law and regulation has not put the States at the forefront of advances in reproductive and associated sciences. Dolly the sheep, the first cloned mammal, was produced in the United Kingdom; embryo research, including the use of embryos created for research and hybrid embryos, is legal there. Stem cell research is well advanced too.7 By way of contrast, in the United States, stem cell research is limited by major restrictions on federal funding, while some states fund embryonic stem cell research and a few prohibit it altogether.8 To a European, there seem to be a multitude of cross-sector rules and unenforceable, overlapping but not always consistent guidelines for researchers and practitioners in the United States—from the National Institutes of Health, the Federal Trade Commission, the Food and Drug Administration, and the American Society for Reproductive Medicine, as well as state medical licensing bodies. Although outcomes of IVF are reported to the Centers for Disease Control and Prevention, there is no national database of gamete donors,9 no assurance over reliability of self-reported data, no requirements for follow-up or monitoring of babies and mothers, and very little federal funding for research on assisted reproductive technologies. It cannot be claimed that there are no disadvantages attaching to the U.K. model of regulation, not least that through such provisions as a ban on commercial surro- gacy or the requirement that the future child’s welfare be considered, the law can end up denying to some men and women what they most desire, in the interests of the greater good. That being so, for a long while, the British public has accepted, relatively enthusiastically, that certain important elements of public and private life are healthier when regulated.10 Regulation and Principles of Its Exercise I n general, the HFEA’s decisions are guided by four principles, derived from the statute and from previous considerations or cases. The first is respect for patient autonomy, which is understood to require choice, information, and the expression of consent in writing to every treatment stage. The second principle is the safety of mothers and potential babies, with every new procedure extensively tested before being licensed. The third is respect for the embryo, although it is worth noting that members of the U.S. population have different views on this from the largely secular British population. The fourth principle is the beneficial application of science and medicine, including to save lives. In any nation state governed by the rule of law, there can be no absolute autonomy for a person, whether a patient, clinician, regulator, or legislator. As individuals, we are all subject to the law; patients are subject to clinical protocols; clinicians have to act within the guidance of their professional bodies, which in turn are subject to the law; and legislators are held in check by judicial interpretation, human rights, and European law. For example, the provisions of the European Convention on Human Rights, which are enacted in British law and which will remain in force after the United Kingdom’s exit from the European Union, circumscribe every right except those addressed in the prohibitions on torture and slavery. Relevant to this discussion, article 8, the right to family life, notes, 1 Everyone has the right to respect for his private and family life, his home and his correspondence. 2 There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic SPECIAL REP ORT: Just Rep r o d uc t io n : Reim a gi n i n g Au ton omy i n Re p rod u c ti v e M e d i c i n e S59 wellbeing of the country, for the prevention of disorder or crime, for the protection of health or morals or for the protection of the rights and freedoms of others. This right reflects John Stuart Mill’s very influential harm principle, laid out, in 1859, in On Liberty, namely, that a person’s liberty may justifiably be restricted only if the exercise of his or her liberty threatens to cause harm to others, although with a notably broad definition of harm extending to morals, rights, and freedoms. In keeping with article 8, one can sum up the British approach in the reproductive science field as taking the default position that research and treatment are allowed as part of the exercise of autonomy while retaining the ability to impose restrictions, whether through prohibitive legislation or the denial of a treatment or research license, if harm to others, including babies, is likely. A good example of this balance and of the approach the United Kingdom has taken to interpreting “harm” is the statutory prohibition on human cloning. Cloning is thought to be harmful not only to the cloned person but also to others in society whose individual worth may be degraded.11 As soon as Dolly’s cloning was announced, the HFEA launched a consultation with the public, from which it drew the distinction between “therapeutic” cloning, as it was then called—namely, cloning techniques from which more could be learned through research concerning human development and illness—and “human” or “reproductive” cloning—namely, the creation of a human being genetically identical to another.12 The consultation revealed widespread public and professional agreement about the undesirability of human cloning but optimism about the scientific advances that might result from stem cell research. A revised act banned human but allowed for therapeutic cloning13—an outcome that was in line with international, European, and worldwide approaches. Principles and Theories in Action T o further clarify the role of regulation in the kinds of difficult ethical quandaries that present in infertility treatment, I am including here some representative cases in which the HFEA made decisions by applying the principles and theories outlined above. Savior siblings. Applying the fourth ethical principle, the HFEA allowed embryo selection to provide a savior sibling.14 In 2003, Raj and Shahana Hashmi, a British couple, sought permission from the HFEA for preimplantation genetic diagnosis of their embryos to select against genes that they carried for beta-thalassemia. They also sought to use the technology to have another baby who could provide a tissue match for their son, Zain, who suffered from the disease. If successful, cord blood from the future child S60 would be used in a transplant to treat Zain’s condition. Other family members had been tested, but none was able to provide a suitable tissue match. The HFEA rejected the arguments that a potential savior sibling might be desired only as a method of providing aid for the older child. We do not inquire into the motives of parents having children without medical assistance, and we concluded that we could safely assume that a child brought into the world as a savior sibling would be loved as much as any other. The case for accepting the Hashmis’ application was strengthened by the fact that they were seeking to avoid passing on an inherited disease. Since their future children risked inheriting beta-thalassemia, they had good reason to seek PGD, and the search for an embryo to match Zain was an additional factor to a process that was justified in itself. In this case, therefore, the autonomy of the parents coincided with the welfare of their existing child, Zain, and indeed the welfare of a new baby, all within the regulatory oversight of the HFEA. In response, a prolife group brought an action in the United Kingdom’s highest court, arguing that the HFEA had exceeded its remit of assisting fertility (the Hashmis were not infertile). But their litigation was unsuccessful.15 The case was similar to the U.S. case of the Nash family, who, after undergoing PGD on their embryos, gave birth to Adam, whose umbilical cord blood saved the life of his older sister, Molly, who had the genetic disorder Fanconi anemia.16 Choice of embryo. Autonomy within the context of regulation may be illustrated by examples of British cases involving the permission or prohibition of choice for the use of gametes. Sometimes a scientific choice is forbidden on the grounds that it is contrary to societal concerns as reflected in the statute or because the free exercise of choice may ultimately be disadvantageous to other members of the public. For example, respect for autonomy might argue for allowing parents to select an embryo that will be born with what is commonly called a disability, which also affects the parents. Yet concern for prevention of harm might caution against allowing this choice. This dilemma has presented itself in relation to deafness. Some deaf people regard deafness as a difference to which society should adapt and as an identity and culture, not a disability to be avoided or cured. They support parents who exercise their autonomy to have a child who shares that condition. In the United States, Candace McCullough and Sharon Duchesneau, a deaf couple, found a sperm donor with five generations of deafness in his family so that Sharon, who had four such generations in her family, could have two deaf children.17 The possibility of choosing in the laboratory to use an embryo that carried a deafness gene was outlawed in the United Kingdom by section 14(4) of the HFE Act 2008. The section prohibits the deliberate choice of an embryo with a “serious disability,” a phrase that we know from the November-December 2017/HASTINGS CENTER REPORT parliamentary record was intended to cover deafness, although one could argue that deafness is not “serious.” The preceding moral debate was as prolonged and deep as any in this field.18 The concept of serious disability merits separate lengthy analysis in itself, but the act deliberately left the phrase undefined and shifted the decision to clinics and potential parents. On the one hand, the views of society at large and of disabled people on what is really serious may vary or be at odds with each other. There are those who maintain that a condition such as deafness or visual impairment is not a serious disability and that the notion that it is reflects society’s unwillingness to accept and adapt to anything that is not “normal.” On the other hand, for some cases of disability, a life may not unfold free of serious difficulties and pain for the disabled person and their family. Those more tragic stories carry as much impact as the stories of difficulties overcome. We should be wary of generalizations and accept that every decision is an individual one. In the end, the campaign by some deaf people for freedom to choose an embryo likely to result in a deaf child19 was rejected. The reasons that held sway were, first, the slippery-slope argument—that selection of an embryo for a particular trait might lead to this becoming a general practice, albeit in pursuit of perfection rather than imperfection—and second, the cost to society of the deaf child.20 If two people who know they have an inheritable disease or are carriers of a disability gene decide to have children naturally, there is nothing to stop them. In addition, our society does not object to the cost of raising the child with a disability. However, the United Kingdom resolved that it would not lend medical help to a couple who wish to bring a disabled child into the world deliberately. In this respect, the U.K. approach can be understood as respecting the choice to have a child and raise it and enabling that family to call on public funds for assistance if the child has a disability. However, using medical skill or resources to intentionally create a child with a disability is considered contrary to the public good and not in the interests of the future child. Choosing an embryo of a particular sex. Cautious balance has been applied to the exercise of parental autonomy in the context of PGD for sex selection. English law permits this for medical reasons, such as when a boy but not a girl is likely to be a carrier of a genetic disease. Sex choice is not allowed for social reasons, even though there is very strong pressure for so-called family balancing, especially among Asian communities in the United Kingdom, who have a history of preferring boys over girls. The considerations against allowing sex selection are societal disapproval of the preference of one sex over the other and the sense of inferiority that could be engendered in existing children of the unwanted sex, typically girls. Sex selection could also lead to disappointment if the technique failed and a child of the unwanted sex was nevertheless born, and that child might even feel unwanted. Some methods of sex selection are not under the authority of the HFEA, and pressure is growing to allow selection on the grounds that parents might have fewer children if they could be sure of having the sex that they preferred. The public in England has twice been consulted on this issue, through focus groups and public opinion polls, and it has maintained opposition to sex selection.21 (Such consultation is very common for policy review in the United Kingdom.) Prohibition of a market in gametes. Legislative decision-making about individuals’ control over their gametes has also been necessary on the question of sale. Respect for the embryo means that gametes may not be sold under English law, although donors’ expenses may be paid—this is something of a compromise on an issue that has been debated for decades.22 The decision against permitting sale turned on the possibility that a woman might be exploited if tempted by money to sell her eggs, a concern similar to that behind British law prohibiting the sale of kidneys or other organs. The HFEA decided that out-of-pocket expenses could be paid, but nothing above that, lest the principles of altruism and voluntariness be violated. One might say that the prohibition violates the potential parents’ autonomy, and that of the donors. Yet gamete donation and surrogacy, which is legal but also uncompensated in the United Kingdom, affects the lives of many, not just those who donate or carry the embryo to birth. The relationships between the parents and the child, the commissioning couple and the surrogate, the donor, the adults, and baby are all vital to the welfare and rights of each actor in the arrangement. This is an example of how autonomy can be limited to accommodate the needs, well-being, and autonomy of others. Egg freezing. Egg freezing was originally contemplated by the HFEA for the relief of young women who were about to undergo cancer treatment that was likely to destroy their fertility. They were to be allowed to freeze their eggs before that treatment started. But the application of human rights and equality law to the initial decision meant that it was not possible to exclude women from freezing eggs for social reasons. The reproductive life span of a woman is short enough for it to be regarded in modern conditions as presenting a dilemma over delaying natural childbearing while seeking education and building careers. The growth of the decision to delay motherhood can be seen in U.K. statistics that show a doubling in the number of births to women over thirty-five since 1990, while the average age of first-time mothers has risen to twenty-eight. Frozen eggs are an attractive option to women who are aware of the problems of career success and are concerned about preserving maximum fertility and the hope of motherhood for SPECIAL REP ORT: Just Rep r o d uc t io n : Reim a gi n i n g Au ton omy i n Re p rod u c ti v e M e d i c i n e S61 the time when it is right for them. There is now no legal or social distinction between men using frozen sperm and women using frozen eggs, save that the success rate for the latter is very low. The rate may well improve, but given the lower number of eggs necessarily available on freezing, the success rate is unlikely ever to match that of IVF carried out at a younger age when more eggs are available. Embryo use and women’s autonomy. Consent requirements can lead to conflicts between the autonomy of partners, specifically seen in many cases between men and women. When Natallie Evans23 was diagnosed with cancer, she decided to use IVF to create and store embryos with her partner prior to receiving chemotherapy that would render her sterile. After the treatment, the couple separated, and he refused his consent to the continued storage of the embryos, thereby denying Evans what seemed to be her only chance of having genetically related children. Evans brought legal action, but judges in the English courts and the European Court of Human Rights, while sympathetic, upheld the HFEA’s view that the consent of both potential parents was necessary in law and that the man had the right to withdraw his consent to storage. In 2008, the law was amended to provide a twelve-month “cooling off ” period to give a partner who withdraws his consent to continued storage of embryos the chance to change his mind before the embryos are finally destroyed, but the change was not retrospective and did not assist Evans. This example is, in fact, a relatively rare example of respect for male autonomy in this field. In British law, decisions around abortion, medical care in pregnancy, and childbirth do not give the father a determining voice. This approach differs to that taken in some other jurisdictions, where courts have pronounced that a woman has a stronger claim to parenthood than a man, and in circumstances similar to the Evans case the man’s consent has been dispensed with.24 Statutory regulation of IVF is designed to uphold female autonomy. It requires that doctors and scientists inform patients and subjects and then abide by the choice these people have made. A well-informed woman should be opposing the unregulated application of new and risky techniques to women, especially if there is pressure from her partner or doctor. The ethical principles of regulation work in her favor. A Societal Responsibility A bsolute respect for autonomy does not and ought not to exist in the field of fertility. The successful practice of assisted reproduction involves more than just one person or one couple. In the United Kingdom, it necessarily involves the general practitioner doctors who diagnose and refer; the clinicians and the influential professional organizations; the lawyers who apply and interpret the HFE Act, S62 the politicians who enacted it and take an interest in its application; the philosophers who speculate on its effect; counselors, nurses, researchers, drug companies, regulators, theologians; religious and other pressure groups, such as those who campaign against any nonnatural use of the embryo; groups with an interest in genetic advances; and patient groups. And it is very important to consider the interests of the prospective child, existing children, and other family members. My experience has led me to believe that thorough regulation of this area of medicine and science allows these conflicting interests to be resolved, providing a foundation for the successful introduction of innovation in infertility treatment. The public can be consulted, and data that serves the well-being of the children who have been conceived by IVF can be collected. 1. U.K. Department of Health & Social Security, Report of the Committee of Inquiry into Human Fertilisation and Embryology (1984; reprinted London: Her Majesty’s Stationery Office, 1988). 2. Ibid., 2. 3. Human Fertilisation and Embryology Authority, https://www. hfea.gov.uk/. 4. S. Sheldon et al., “‘Supportive Parenting,’ Responsibility and Regulation: The Welfare Assessment under the Reformed Human Fertilisation and Embryology Act (1990),” Modern Law Review 78, no. 3 (2015): 461-92. 5. C. Thompson, “IVF Global Histories, USA: Between Rock and Marketplace,” Reproductive Biomedicine & Society Online 2 (2016): 128-35; M. Sargent, “Regulating Egg Donation: A Comparative Analysis of Reproductive Technologies in the United States and United Kingdom,” Michigan Journal of Public Affairs 4 (2007): 1-17. 6. M. Ollove, “States Not Eager to Regulate Fertility Industry,” Stateline, The Pew Charitable Trusts, March 18, 2015, http://www. pewtrusts.org/en/research-and-analysis/blogs/stateline/2015/3/18/ states-not-eager-to-regulate-fertility-industry. 7. “The Life of Dolly,” The Roslin Institute, The University of Edinburgh, accessed October 5, 2017, http://dolly.roslin.ed.ac. uk/facts/the-life-of-dolly/index.html; Human Fertilisation and Embryology Act 2008 (UK). 8. The Dickey-Wicker Amendment (to a bill passed by the U.S. Congress in 1995) prohibited the Department of Health and Human Services from using federal funds for the creation of research embryos and for research involving the destruction of human embryos. Sherley v Sebelius (689 F 3rd 776 [2012]) confirmed the lifting of the ban where surplus embryos were available. A few states provide public money for stem cell research, and others ban the research or ban the use of public money on it. Some universities carry it out with private funding. 9. Ethics Committee of the American Society for Reproductive Medicine, “Disposition of Abandoned Embryos: A Committee Opinion,” Fertility and Sterility 99, no. 7 (2013): 1848-49; M. Sabatello, “Regulating Gamete Donation in the US: Ethical, Legal & Social Implications,” Laws 4, no. 3 (2015): 352-76. 10. There are many examples to support this, and reference to various debates and media coverage surrounding legislation in the United Kingdom is informative. See, for example, the Human Tissue Act 2004 and legislation concerning nighttime noise control in residential areas (Environmental Protection Act 1997), access to university education (Higher Education & Research Act 2017), regulation November-December 2017/HASTINGS CENTER REPORT of television and radio (Communications Act 2003), regulation of gambling (Gambling Act 2005), keeping of dogs and other pets (Animal Welfare Act 2006), and regulation of psychologists (Health Care and Associated Professions Order 2009). 11. United Kingdom, Human Reproductive Cloning Act 2001, subsequently incorporated into the Human Fertilisation and Embryology Act 2008. 12. The Human Genetics Advisory Commission and the Human Fertilisation and Embryology Authority, Cloning Issues in Reproduction, Science and Medicine: A Report from the Human Genetics Advisory Commission and the Human Fertilisation and Embryology Authority (London: Stationery Office, 1998). 13. The Human Reproductive Cloning Act 2001. 14. “Hashmis Fail in ‘Saviour Sibling’ Attempt,” BioNews 266 (2004), http://www.bionews.org.uk/page_12031.asp. 15. Quintavalle vs. Human Fertilisation and Embryology Authority, House of Lords, Opinions of the Lords of Appeal for Judgment in the Cause, [2005] UKHL 28. 16. M. McClean, “Children’s Anatomy v. Children’s Autonomy: A Precarious Balancing Act with Preimplantation Genetic Diagnosis and the Creation of Savior Siblings,” Pepperdine Law Review 43 (2015): 837-80. 17. “Couple ‘Choose’ to Have Deaf Baby,” BBC News, April 8, 2002, http://news.bbc.co.uk/2/hi/health/1916462.stm. 18. A. Stevens, “Debating Deafness and Embryo Selection: Are We Undermining Reproductive Confidence in the Deaf Community?,” BioNews 454, April 21, 2008. http://www.bionews. org.uk/page_37988.asp; G. Porter and M. K. Smith, “Preventing the Selection of ‘Deaf Embryos’ under the Human Fertilisation and Embryology Act 2008: Problematizing Disability?,” New Genetics and Society 32, no. 2 (2013): 171-89; United Kingdom, Human Fertilisation and Embryology Act 2008. 19. A. O’Hagan, “Some ‘Gifts’ One Is Better Off Without,” The Telegraph, March 11, 2008, http://www.telegraph.co.uk/comment/ columnists/andrewo_hagan/3555996/Some-gifts-one-is-better-offwithout.html. 20. United Kingdom, House of Lords, Joint Committee on the Human Tissue and Embryos (Draft) Bill, Human Tissue and Embryos (Draft) Bill (2007). 21. Human Fertilisation and Embryology Authority, Sex Selection: Options for Regulation, 2003, http://image.guardian. co.uk/sys-files/Guardian/documents/2003/11/12/HFEAreport.pdf; Human Fertilisation and Embryology Authority, “Review of Sex Selection,” http://hfeaarchive.uksouth.cloudapp.azure.com/www. hfea.gov.uk/517.html. 22. Human Fertilisation and Embryology Authority, Code of Practice, http://www.hfea.gov.uk/docs/CoP_2016_Final.pdf, section 13. 23. Evans v. The United Kingdom, European Court of Human Rights Grand Chamber, 2007. 24. Nahmani v. Nahmani, The Supreme Court of Israel, sitting as the Court of Civil Appeals, 1996. SPECIAL REP ORT: Just Rep r o d uc t io n : Reim a gi n i n g Au ton omy i n Re p rod u c ti v e M e d i c i n e S63