Born Well: Prenatal Genetics and the Future of Having Children

Description

This book brings together an international collection of experts in reproductive ethics, law, disability studies, and medicine to explore the challenging future of reproduction and children. From the medical to the social and from the financial to the legal, the authors explore the expanding impact of reproductive genetics on our society. New advances in genetic technologies are revolutionizing the practice of reproductive medicine. We have expanded our ability to detect genetic changes in embryos and fetuses in ways that potentially allow to identify, treat, or prevent a growing range of diseases. The development of gene-editing technologies raises questions about the possibility of removing disease-causing variants from embryos before pregnancy implantation. The growing sophistication of prenatal genomic sequencing offers us glimpses into the whole genome of the developing fetus. And, the increasingly sophisticated science of 'gene matching' allows us greater and greater foreknowledge of how the genomes of two individuals will combine in a future child. This is an indispensable book on the newest developments in bioethics caused by the sciences. Chapter 5 is available open access under a Creative Commons Attribution 4.0 International License via link.springer.com. Introduction Contents Part I Clinical Background 1 Women, Children, Families and the Translation of Genomics in Reproductive Medicine 1.1 Introduction 1.2 Genetic Testing in the Reproductive Context 1.3 Translating Genomics from the Bench to the Bedside 1.4 Conclusion References 2 Practicing Prenatal Medicine in a Genomic Future: How the Practice of Pediatrics May (Or May Not) Change with the Introduction of Widespread Prenatal Sequencing 2.1 Introduction 2.2 Drivers of Genomic Testing Implementation 2.3 Historical Review of Impact of Prenatal Genetic Testing 2.4 Effects of Next-Generation Genomic Technologies on Prenatal Diagnosis 2.5 Carrier Screening 2.6 Regional and Global Differences in Contextual Factors 2.7 Conclusion References Part II Voices of Disability 3 Eugenics or Not, Prenatal Genetic Testing’s Common Issues Need to Be Addressed 3.1 Introduction 3.2 The Expressivist Critique of Prenatal Genetic Testing 3.3 Distinctions with the Eugenics Movement 3.4 Eugenic Distinctions and Modern Administration of Prenatal Genetic Testing 3.5 Eugenics Concerns and Common Ground 3.6 Conclusion 4 The Impact of Prenatal Screening on Disability Communities and the Meaning of Disability 4.1 Introduction 4.2 Attitudes of Disabled People to the Rise of Prenatal Screening 4.3 Attitudes of Families 4.4 Changing Responses to Disability as a Consequence of Screening 4.5 Conclusion References 5 An Expressivist Disability Critique of the Expansion of Prenatal Genomics 5.1 Introduction 5.2 Concerns About Consequences 5.2.1 Pathologization and Unintended Consequences 5.3 Expressing a Message: Claims and Examples 5.3.1 “Official” Messages 5.3.2 Statements Made by Professionals 5.3.3 The Message Received by People with Disabilities 5.4 The Social Phenomenon of Prenatal Testing 5.5 Meaning and Medicalization 5.6 The Meaning of the Social Phenomenon of Prenatal Testing 5.6.1 Examples of Medicalization in Action 5.6.2 The Logic of Medicalization 5.7 Autonomy as an Outcome Rather than Termination 5.8 Conclusion References Part III Voices of Social Sciences and the Humanities 6 The Hypothetical Healthy Newborn 6.1 The Arc of Knowing 6.2 The Ethical Paradox of a Patient within a Patient 6.3 The Hypothetical Healthy Newborn as Normate Template 6.4 Two Ways of Knowing 6.5 Vitality 7 The Good and the Goal of Pre-conception and Pre-natal Genetic Testing from a Catholic Perspective 7.1 The Catholic Church’s Historical Approaches to Health Care and Eugenics 7.2 Moral Approaches to Genetic Technologies 7.3 Conclusion 8 Pathways to Affluence: Socioeconomic Incentives in Prenatal Testing and Abortion 8.1 Introduction 8.2 Responsible Motherhood and Its Obligations 8.3 Indirect Costs 8.4 Public Views on Prenatal Testing and the Cost of Disability 8.5 Pathways to Affluence 8.6 Profiting From the Pathway 8.7 Beyond Down Syndrome References Part IV The Future? 9 An Intelligent Parents Guide to Prenatal Testing: Having a Well-Born Child Without Genomic Selection 9.1 Too Much Information, Too Many Choices 9.2 Who’s Harmed by Not Selecting Against Disease and Disability? Is Anything Wrong with Not Selecting? 9.3 Are There Moral Reasons Against Prenatal Selectivity? 9.4 Who Bears the Cost of the Child You’re Bearing? 9.5 Actionable Results: Therapeutic Testing 9.6 Conclusion Resources for Further Reading Index