Human Embryos and Preimplantation Genetic Technologies

Ethical, Social, and Public Policy Aspects

E. Scott Sills, Gianpiero D. Palermo

• Publisher: Academic Press
• Year: 2019
• Print ISBN: 9780128164686
• eBook ISBN: 9780128167441
• Topic: Biological Sciences
• Subtopic: Genetics & Genomics
• Index: Biological Sciences

Human Embryos and Preimplantation Genetic Technologies: Ethical, Social, and Public Policy Aspects presents the first holistic analysis of PGD and PGS as it is practiced and regulated worldwide. In addition to scientific and technical aspects, the book provides perspectives on the ethical, legal, religious, policy and social implications of global assisted reproduction technologies, including in Africa, Asia, Europe, North and South America, and Australia. Chapters cover history, ethics, feminism, family dynamics, psychological and interpersonal factors, the current state of PGD and PGS in 20 different sovereign nations and religious communities, and provide an analysis of public policy concerns and future directions.- Provides an in-depth discussion of PGD and PGS as practiced and regulated worldwide- Offers an accessible resource for researchers, medical professionals, patients, regulators and policymakers seeking expert opinions on PGS and PGD- Contains chapters contributed by international clinicians, researchers and thought leaders in the field of assisted reproductive technology

Chapter 1

The challenge for medical ethicists

Weighing pros and cons of advanced reproductive technologies to screen human embryos during IVF

Inmaculada de Melo-Martín Weill Cornell Medicine, New York, NY, United States

Abstract

Embryo screening technologies offer important benefits to individuals who use them and society. These techniques can expand the reproductive options of many prospective parents and can contribute to reducing the burdens of disease and disability. Nonetheless, embryo screening techniques present individuals and societies with important ethical challenges. Here, I explore some of them. In particular, I discuss the costs for prospective parents of increased reproductive choices, as well as concerns about sanctioning problematic social norms, increasing social injustice, limiting the ways societies can tackle diseases and disabilities, and promoting the commodification of children.

Keywords

Commodification; Decision-making costs; Discrimination; Embryo screening; Genetic determinism; Social injustice

Introduction

Like other repro-genetic technologies, the development and use of embryo screening techniques in the context of reproduction have produced a range of responses. On one side of the spectrum are those who view embryo screening technologies with great suspicion on the grounds that they ultimately promote eugenic goals and threaten human dignity [1,2]. On the other side, we find those who enthusiastically embrace these technologies because of their ability to create “better” offspring [3,4]. Whatever the views regarding embryo screening technologies in reproduction, most agree that they raise significant ethical concerns. The purpose of this contribution is to explore some of these challenges.

Embryo screening techniques can aim to improve reproductive success or create babies with or without particular genetic variants. Although both of these uses raise ethical concerns, my focus in this chapter will be on the latter. Because decisions regarding whether to screen embryos are ethically relevant to the individuals using these techniques and also to the societies in which these technologies are implemented, in the following discussion, I address some of the ethical challenges that embryo screening poses for prospective parents and for society in general. Although concerns about whether embryo screening techniques are safe for babies born through their use are clearly an important ethical consideration for prospective parents and for society, I will not address such concerns here. Some evidence suggests that the use of embryo screening technologies does not increase the risk for major malformations or negatively affect children's developmental outcomes [5,6]. Nonetheless, embryo screening techniques are relatively new, and thus more studies need to be conducted regarding long-term health outcomes.

To screen or not to screen: ethical challenges

Few would deny that embryo screening technologies offer important benefits to the individuals who use them as well as society. These techniques can expand the reproductive options of many prospective parents and contribute to reducing the burdens of disease and disability. Nonetheless, like all technologies, embryo screening techniques are implemented within particular social contexts, and thus their use shapes and is shaped by such contexts. The initial application of embryo screening techniques for diagnostic purposes was limited to screening for severe disorders that caused significant morbidity or mortality, and for which treatment was unavailable [7,8]. However, applications for preimplantation genetic diagnosis have expanded rapidly. Today, approximately 400 different conditions can be tested, many of which involve late-onset or lower-penetrance mutations [9]. Its use is also increasing for elective sex selection [10]. Comprehensive genetic testing techniques, such as microarrays and whole-genome sequencing, which can screen many if not all chromosomes or genes simultaneously, are beginning to be introduced in the clinic. Such techniques can provide information about hundreds of mutations and variants related not only to disease risks but also to some non–health related traits [11,12].

Clearly, ethical concerns raised by embryo screening for a devastating childhood disease are different from those produced when screening embryos for non–health related traits. Hence, conclusions about the ethical permissibility of embryo screening must take into account the particular traits being tested. Nonetheless, current embryo screening practices in general create various ethical challenges. I explore some of them subsequently.

Ethical challenges for prospective parents

The strongest argument in favor of embryo screening techniques appeals to reproductive freedom. Often, prospective parents make decisions about embryo screening when facing the possibility of transmitting a genetic mutation related to some disease or disability. Thus, the use of embryo screening can increase reproductive options by allowing parents to have genetically related children without the mutation in question.

However, this increased choice is not cost-free [13,14]. Some of these costs are related to decision-making, from acquiring information required to make an appropriate choice, and to expending time and effort to make the choice in question. Because of the various screening possibilities, prospective parents will be faced with decisions about whether to test their embryos for a specific mutation of interest or for a whole suite of genetic conditions. The availability of comprehensive genetic testing techniques makes these costs particularly significant because they can generate unparalleled amounts of information about an individual [15]. Many prospective parents are likely to have difficulties making sense of much of the information provided, determining its relevance, ascertaining what the consequences might be for their future babies, establishing how serious the risks involved might be, and so on. In the context of reproductive decision-making, these costs are even more salient because prospective parents will likely be receiving such information not just for one embryo but for several of them. Thus, they could be confronted with a choice among various embryos, all of which lack the particular genetic mutation that they were trying to avoid. The more information that can be gathered about the genomic endowment of embryos, the more difficult, and thus the costlier the decision will be to make.

In addition, decisions about whether to screen embryos force prospective parents to confront choices about how to handle nonselected embryos [16]. Such decisions necessitate prospective parents to determine their stance on the moral status of an embryo and to determine whether to consent to their destruction or their donation for research purposes, or to keep the embryos frozen [17].

Another cost of choice is the fact that responsibility arises when one chooses. The availability of embryo screening technologies makes prospective parents responsible for their choice to use such technologies, or not. This cost of increased choice can affect prospective parents in two different ways. First, once the option exists to screen embryos, prospective parents might feel pressured to use these technologies. Indeed, evidence shows that many women feel they have little choice to say no when health care professional recommend prenatal genetic testing in general [18]. The decisions of prospective parents who are thought to be at risk for having children with undesirable characteristics such as diseases and disabilities would be particularly scrutinized, and their choices, especially when they do not conform to societal expectations, would be judged in need of justification.

Second, the option to screen embryos (or not) for particular genetic mutations introduces the possibility of choice into a situation in which chance used to be the deciding factor [19,20]. Embryo screening now places the genetic makeup and well-being of future children more within the apparent control of prospective parents' choices. Therefore, prospective parents can be held responsible and judged blameworthy if they choose inappropriately: that is, if they fail to use embryo screening when others think they should, or use it when others think otherwise. Of course, prospective parents will also hold themselves responsible for these choices [21]. This concern is particularly relevant because embryo screening can be financially burdensome for many prospective parents [22,23]. Embryo screening involves the use of in vitro fertilization (IVF). For prospective parents whose main reason for using embryo screening is the desire not to transmit a genetic mutation, the financial burdens of IVF and embryo screening technologies can be excessive, which may lead to regret. Even for those who are already using IVF for infertility reasons, the additional expense of embryo screening can present them with difficult and remorse-producing choices.

Importantly, the costs of these reproductive decisions are bound to be different for women and men and are likely to overburden women. This is the case because women's reproductive judgments receive a significant amount of social scrutiny. Women's decisions about whether to become pregnant, when to do so, and how to manage the pregnancy are open to inspection. Pregnant women are asked to control what they put into their bodies, sacrifice their pleasures and desires to limit even...

Table of contents

• Cover image
• Title page
• Table of Contents
• Copyright
• List of contributors
• Preface
• Chapter 1. The challenge for medical ethicists: Weighing pros and cons of advanced reproductive technologies to screen human embryos during IVF
• Chapter 2. Too much information? The paradox of enlarging genetic datasets for human embryo assessment during in vitro fertilization (IVF)
• Chapter 3. A new global perspective: Geographic variations in the use of preimplantation genetic technologies to screen human embryos
• Chapter 4. Elective gender selection of human embryos during IVF: Ethical and public policy considerations
• Chapter 5. Embryo mosaicism and its impact on IVF decision-making when using preimplantation genetic screening: Current challenges and controversies
• Chapter 6. Genetic counseling for preimplantation genetic testing (PGT): Practical and ethical challenges
• Chapter 7. Psychological and interpersonal factors in preimplantation embryo assessment
• Chapter 8. Nonideal theory, self-respect, and preimplantation genetic technologies
• Chapter 9. Fate of non-transferred screened embryos from IVF: Current challenges and future directions
• Chapter 10. The Islamic perspective: Application of advanced reproductive technologies to screen human embryos during IVF
• Chapter 11. An Orthodox Jewish approach to ethical and social aspects of embryo testing
• Chapter 12. The Australia experience: Cultural and political factors shaping human embryo assessment during in vitro fertilization
• Chapter 13. The Belgian experience: Cultural and political factors shaping preimplantation genetic diagnosis during in vitro fertilization
• Chapter 14. The Brazil experience: Evolution and future trajectories of public health policy regarding human embryo assessment
• Chapter 15. The Chilean experience: Cultural and political factors shaping human embryo assessment during IVF
• Chapter 16. The Croatian experience: Cultural and political factors shaping human embryo assessment during assisted reproductive technology
• Chapter 17. The Ireland experience: Cultural and political factors shaping the development of regulation of assisted human reproduction, ethical status of human embryos, and proposed regulation of surrogacy
• Chapter 18. The Thailand experience: Cultural and political factors shaping human embryo assessment during IVF
• Chapter 19. The Ukraine experience: Preimplantation testing of human embryos
• Chapter 20. Mitochondrial replacement therapy: Ethical, sociocultural, and public policy considerations
• Chapter 21. Editing human reproduction? Legal and ethical aspects of genome editing
• Index