Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies

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
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