Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies

Description

Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies offers thorough discussions on preconception carrier screening, genetic engineering and the use of CRISPR gene editing, mitochondrial gene replacement therapy, sex selection, predictive testing, secondary findings, embryo reduction and the moral status of the embryo, genetic enhancement, and the sharing of genetic data. Chapter contributions from leading bioethicists and clinicians encourage a global, holistic perspective on applied challenges and the moral questions relating the implementation of genetic reproductive technology. The book is an ideal resource for practitioners, regulators, lawmakers, clinical researchers, genetic counselors and graduate and medical students. As the Human Genome Project has triggered a technological revolution that has influenced nearly every field of medicine, including reproductive medicine, obstetrics, gynecology, andrology, prenatal genetic testing, and gene therapy, this book presents a timely resource. Provides practical analysis of the ethical issues raised by cutting-edge techniques and recent advances in prenatal and reproductive geneticsContains contributions from leading bioethicists and clinicians who offer a global, holistic perspective on applied challenges and moral questions relating to genetic and genomic reproductive technologyDiscusses preconception carrier screening, genetic engineering and the use of CRISPR gene editing, mitochondrial gene replacement therapy, ethical issues, and more Cover Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies Copyright Contributors 1 Genomic Editing-From Human Health to the ``Perfect Child´´ Introduction Definitions and Context Recombinant DNA Technology-The Basis for DNA Modification Genome Editing Meganucleases Zinc Finger Nucleases (ZFNs) Transcription-Activator Like Nucleases (TALENs) CRISPR/Cas9 Technology Base Editing Technology Principles of Using Genome Editing in Research and Clinical Practice Ethical Issues in Clinical Genome Editing Nonmaleficence and Risk/Benefit Assessment Risk to Benefit Analysis Beneficence in Gene-Editing Therapies Respect for Autonomy Confidentiality Germline Editing Applying the Principle of Justice in Clinical Genome Editing Eugenics, Enhancement, and ``Designer Babies´´ Conclusions References Further Reading 2 Ethics of Mitochondrial Gene Replacement Therapy Introduction What Is Mitochondrial Disease and Mitochondrial Donation? The UK Timeline The International Position Are the Techniques Safe? Ethical Issues ``Three-Parent Babies´´ and Identity Genetic Modification and the ``Slippery Slope´´ Donating Eggs (Risks and Benefits) Differences Between PNT and MST Mitochondrial Disease as Complex: Diagnosis, Predicting Risk, and Genetic Counseling Alternative Reproductive Options Polar Body Transfer and Gene Editing Conclusion References Further Reading 3 Reproductive Technologies Used by Same Gender Couples Introduction Procreative Autonomy Gamete and Embryo Donation Surrogacy Agreement Transgender Parenthood Conscience Clause Conclusions References Further Reading 4 Ethical Issues Raised by Multiparents* Introduction Key Terms in the Debate: Filiation, Kinship, and Parenthood Multiparents of Children Born Through ARTs Maternity Paternity Where Do All These Parents Come From? Sperm Donation Egg Donation Embryo Donation Surrogacy Ethical Issues The Right to Know One's Origins Donors Anonymity The Consent of Participants Secondary Ethical Issues Medical Tourism Slippery Slope Final Considerations References Further Reading 5 Revisiting the Nondirective Principle of Genetic Counseling in Prenatal Screening Introduction Historical Background and Implementation of Public Policy for Prenatal Screening Ethical References in the Development of Screening Tests Genetic Consultation in Prenatal Screening: Nondirective and Neutral? Nondirective Consultation Challenged or an Opportunity to Support Reproductive Autonomy by Complete Balanced Information? Taking Reproductive Autonomy Further: Innovations in Information and Aided Decision-Making Tools Conclusion References 6 Sex Selection, Gender Selection, and Sexism Introduction The Roots and Reasons of Sex Selection From Politics on Reproduction to Biopolicy Missing Girls: Why and How Many? Legal and Ethical Questions Conclusion References Further Reading 7 The Impact of Big Data on Beginning of Life Issues Introduction: First of All, What Is Really ``Big Data´´? Big Data and Health care: An Expanding Universe Big Data and Beginning-of-Life Issues: A Field in Its Infancy Conclusion: A Work in Progress References Further Reading 8 The Moral Status of the Embryo From the Standpoint of Social Perceptions Introduction The Empirical Perspective in Bioethics and Public Perceptions of Science Studies The Notion of Moral Status Two Contrasting Narratives on the Moral Status of the Embryo The Status of the Embryo Frame and the Beginning of Individual Human Life Views on the Status of the Embryo, Religious Beliefs, Scientific Literacy, and Gender Moral Status and Attitudes to Embryo Research Conclusions References 9 Fetal Reduction Bioethical Issues of Fetal Reduction: Why Words Matter Medical Use: Selective Fetal Reduction Medical Use: Nonselective Fetal Reduction Nonmedical Uses: Selective Fetal Reduction Nonmedical Use: Nonselective Fetal Reduction The Moral Status of Embryo and Fetus Fetal Reduction: ``A Soft Cover for Hard Choices´´ Parental Autonomy and Parental Responsibility Conclusion References 10 Stem Cell Therapies for Neurodegenerative Disorders: An Ethical Analysis Introduction An Overview on Stem Cell Therapies for Neurodegenerative Disorders Parkinson's Disease Stem Cell Treatments for Other Neurological Disorders Use of Placebo Controls in Sham Surgery Is Sham Surgery Accepted by Potential Subjects? Sham Surgery as a Form of Mitigated Trolley Risk to Benefit Analysis What Role Should Collateral Benefits Have in the Decision to Allow Sham Surgery? Are Placebo-Controlled Trials Actually Needed in Surgery Studies? Autonomy Versus Therapeutic Misconception Risk to Benefit Analysis for Stem Cell Therapies in Neurodegenerative Disorders What Are the Potential Benefits of Stem Cell Therapy in Neurodegenerative Disorder Induced Pluripotent Stem Cell Therapies for Neurodegenerative Disorders Moral Status of IPSCs Conclusions References Further Reading 11 Predictive Genetic Testing in Multifactorial Disorders Introduction Information and Consent in Predictive Testing for Multifactorial Disorders Respect for Autonomy Delivering Relevant Information Understanding Relevant Information Capacity to Act Voluntarily Nondirectiveness in Predictive Testing for Multifactorial Disorders Direct to Consumer Genetic Testing When to Recommend Predictive Genetic Testing? Nonmaleficence and Risk Assessment Confidentiality and Family Sharing of the Genetic Results Predictive Genetic Testing in Children Genetic Exceptionalism and Multifactorial Disorders Conclusions References Further Reading 12 Whole-Genome Sequencing as a Method of Prenatal Genetic Diagnosis* Introduction From the Standard of Prenatal Diagnosis to Whole-Genome Sequencing Whole-Genome Sequencing as a Prenatal Diagnostic Tool What Is Whole-Genome Sequencing? Whole-Genome Sequencing Applications in Prenatal Diagnosis Variants of Unknown Significance Nonmedical Indicators Carrier Status Late-Onset Conditions Susceptible Genes Incidental Findings Limitations of Whole-Genome Sequencing Ethical Problems Surrounding Whole-Genome Sequencing Large Amounts of Information Anxiety and Confusion in Parents Parents Reproductive Choices, Expectations, and Genetic Determinism Right of the Parents to Information vs Right of the Child to ``Not to Know´´ The Importance of Pre-WGS Test and Post-WGS Diagnostic Counseling Counseling in WGS Pre-WGS Test Counseling Post-WGS Diagnostic Counseling Ethical Reflection on WGS Test in Prenatal Diagnosis Conclusion References 13 Noninvasive Prenatal Genetic Diagnosis Introduction High-Risk Versus Low-Risk Populations Consent and Decision-Sharing Counseling for NIPT Should Parents be Allowed to Get Tested ``for Information Only´´? A Teleological Approach to NIPT NIPT and Discrimination Eugenics, Procreative Beneficence, and NIPT Conclusions References 14 Prenatal Testing in Low-Risk Populations: A US Perspective Introduction Background on Offering the Test to Low-Risk Women Overestimation of the Significance of Genetic Information Diagnostic Test Versus Screening Test Reduced Penetrance and Variable Expressivity Negative Test and Health Baby Assumptions Incidental Findings: Maternal Conditions Abortion Ethics of Testing Just for Information Practical Issues: Who Will Counsel Patients? OB/Gyn Counseling Information Access Outside of the United States Problematic Solutions Linear Model of Information Transmission Justice Issues: Access to Testing Conclusion References Further Reading 15 Using Genetics for Enhancement (Liberal Eugenics) Introduction Definition of Enhancement Types of Enhancement Physical Enhancement Cognitive Enhancement Moral Enhancement (How) Should We Distinguish Enhancement From Therapy? Genetic Enhancement Genomics and Epigenomics as Base for Genetic Enhancement High-Throughput Methodology for Genome Wide Genetic, Epigenetic, and Gene Expression Profiling Personalized Medicine as a Model for the Implementation of Genetic Enhancement From Predictive Genomics to Preventive Medicine and Genetic Enhancement Ethical Issues in Personalized Medicine Gene Therapy, Molecular-Targeted Therapy, and Cellular Therapy Gene Therapy Molecular-Targeted Therapy Cellular Therapy Ethical Aspects of Gene Therapy, Molecular-Targeted Therapy, and Cellular Therapy Gene Enhancement, Molecular-Targeted Enhancement, Cellular Enhancement Genetic Enhancement of Athletic Performance EPO VEGF Gene PPARGC1A, PPARA, and PPARD Genes ACE and ACTN3 Genes IGF-1 Gene CK-MM Gene TNC Gene COL1A1 and COL5A1 Genetic Enhancement of Athletic Performance-Ethical Issues Aging-Related Genes-A Key for Antiaging and Longevity Liberal Eugenics Regulation, Health Coverage, and Public Opinion Conclusion References 16 Should Incidental Findings Arising From Prenatal Testing be Reported Indiscriminately to Patients? Introduction Incidental Findings in the Prenatal Setting Challenges of Definition Current Practice, New Developments, and Specific Features of the Prenatal Setting Reporting Incidental Findings in the Prenatal Setting Arguments Pro Disclosure Arguments Against Disclosure Handling Incidental Findings: Informed Consent Procedures and Pretest Counseling in Genetic Testing Conclusion References Further Reading 17 Third Party Sharing of Genetic Information Introduction Medical Practitioners and Institutions Family Members, Partners, and Potential Partners as Third Party Criminal Investigations Employment Pharmaceutical Investigations and Clinical Research Insurance Conclusions References Further Reading Index Back Cover