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Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies

2nd Edition - August 14, 2023

Editor: Sorin Hostiuc

Paperback ISBN:

9 7 8 - 0 - 4 4 3 - 1 9 0 4 5 - 2

eBook ISBN:

9 7 8 - 0 - 4 4 3 - 1 9 0 4 6 - 9

The Human Genome Project has triggered a technological revolution that has influenced nearly every field of medicine, including reproductive medicine, obstetrics, gynecology,… Read more

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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 second edition of Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies offers a thorough, timely discussion of ethical issues raised by the latest genetic and genomic technologies applied in human reproductive and prenatal medicine, providing practical recommendations, guidelines, and algorithms to support ethical clinical practice. Here, international experts consider the ethics of technologies from preconception carrier screening to genetic engineering, 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. Throughout the book, contributors adopt a global, holistic perspective on applied challenges and the moral questions around the implementation of genetic reproductive technologies. The book is an ideal resource for practitioners, regulators, lawmakers, clinical researchers, genetic counselors, and graduate and medical students.This fully updated second edition examines new developments in the field, tackling ethical aspects of organoid development, recent advances in pharmacogenomics, direct-to-consumer genetic testing, and genetic engineering.

Cover image
Title page
Table of Contents
Copyright
Contributors
Chapter 1: Genomic editing: From human health to the “perfect child”
Abstract
1: Introduction
2: Ethical issues in clinical genome editing
3: Conclusions
References
Chapter 2: Ethics of mitochondrial gene replacement therapy
Abstract
1: Introduction
2: What is mitochondrial disease and mitochondrial donation?
3: The UK timeline
4: The international position
5: Are the techniques safe?
6: Ethical issues
7: “Three parent babies” and identity
8: Genetic modification and the “slippery slope”
9: Risks for egg donors
10: Ethical differences between PNT and MST
11: Mitochondrial disease as complex: Diagnosis, predicting risk, and genetic counseling
12: Alternative reproductive options
13: Polar body transfer and gene editing
14: Conclusion
References
Further reading
Chapter 3: Reproductive technologies used by same-gender couples
Abstract
1: Introduction
2: Procreative autonomy
3: Gamete and embryo donation
4: Surrogacy agreement
5: Trans parenthood
6: Conscience clause
7: Conclusions
References
Further reading
Chapter 4: Ethical issues raised by multiparents
Abstract
1: Introduction
2: Multiparents of children born through ARTs
3: Where do all these parents come from?
4: Ethical issues
5: Secondary ethical issues
6: Final considerations
References
Chapter 5: Revisiting the nondirective principle of genetic counseling in prenatal screening
Abstract
1: Introduction
2: Genetic counseling: An overview
3: The nondirective principle in genetic counseling
4: Does the nondirective principle compromise genetic counseling in prenatal screening?
5: Does genetic counseling in prenatal screening compromise the nondirective principle?
6: The concept of nondirectivity vs the role of genetic counseling
7: Activating the conscience clause in genetic counseling in prenatal screening?
8: Genetic counseling in prenatal screening in ethnic and cultural minorities
9: Medical tourism for abortion after genetic counseling
10: Issues of genetic counseling in prenatal screening
11: Final considerations
References
Chapter 6: Sex selection, gender selection, and sexism
Abstract
1: Introduction
2: The roots and reasons for sex selection
3: From politics on reproduction to biopolicy
4: Missing girls: Why and how many?
5: Legal and ethical questions
6: Conclusion
References
Chapter 7: The impact of “Big Data” on beginning-of-life issues
Abstract
1: Introduction: First, what is really “Big Data”?
2: “Big Data” and healthcare: An expanding universe
3: “Big Data” and Beginning-of-life issues: A field in its infancy
4: Conclusion: Work in progress
References
Chapter 8: The moral status of the embryo and its uses: Bioethics and social perceptions
Abstract
1: Introduction
2: The empirical perspective in bioethics and public perceptions of science studies
3: The notion of moral status
4: Contrasting narratives on the moral status of the embryo
5: The status of the embryo frame and the beginning of individual human life
6: Views on the status of the embryo, religious beliefs, scientific literacy, and gender
7: Moral status and attitudes to embryo research
8: Conclusions
References
Chapter 9: Fetal reduction
Abstract
1: Bioethical issues of fetal reduction: Why words matter
2: The moral status of embryo and fetus
3: Fetal reduction: “A soft cover for hard choices”
4: Parental autonomy and parental responsibility
5: Conclusion
References
Chapter 10: Stem cell therapies for neurodegenerative disorders: An ethical analysis
Abstract
1: Introduction
2: An overview on stem cell therapies for neurodegenerative disorders
3: Risk-to-benefit analysis for stem cell therapies in neurodegenerative disorders
4: Induced pluripotent stem cell therapies for neurodegenerative disorders
5: Moral status of IPSCs
6: Conclusions
References
Chapter 11: Predictive genetic testing in multifactorial disorders
Abstract
1: Introduction
2: Respect for autonomy
3: Nondirectiveness in predictive testing for multifactorial disorders
4: Direct-to-consumer genetic testing
5: When to recommend predictive genetic testing?
6: Nonmaleficence and risk assessment
7: Confidentiality and family sharing of the genetic results
8: Predictive genetic testing in children
9: Genetic exceptionalism and multifactorial disorders
10: Conclusions
References
Chapter 12: Whole-genome sequencing as a method of prenatal genetic diagnosis: Ethical issues
Abstract
1: Introduction
2: From the standard of prenatal diagnosis to whole-genome sequencing
3: Whole-genome sequencing as a prenatal diagnostic tool
4: Ethical problems surrounding whole-genome sequencing
5: The importance of pre-WGS test and post-WGS diagnostic counseling
6: Conclusion
References
Chapter 13: Noninvasive prenatal genetic diagnosis
Abstract
1: Introduction
2: High- versus low-risk populations
3: Reproductive autonomy
4: Counseling for NIPT
5: Should parents be allowed to get tested “for information only”
6: NIPT and discrimination
7: Eugenics, procreative beneficence, and NIPT
8: Conclusions
References
Chapter 14: Prenatal testing in low-risk populations: After routinization
Abstract
1: Introduction
2: Background on offering the test to low-risk women
3: Diagnostic test versus screening test
4: Reduced penetrance and variable expressivity
5: Negative test and healthy baby assumptions
6: Incidental findings: Maternal conditions
7: Ethics of testing just for information
8: Practical issues: Who will counsel patients?
9: OB/Gyn counseling
10: Information access outside of the United States
11: Problematic solutions
12: Linear model of information transmission
13: Justice issues: Access to testing
14: Conclusion
References
Chapter 15: Using genetics for enhancement (liberal eugenics)
Abstract
Acknowledgments
1: Introduction
2: Genetic enhancement
3: Liberal eugenics
4: Regulation, health coverage, and public opinion
5: Conclusion
References
Chapter 16: Should incidental findings arising from prenatal testing be reported indiscriminately to patients?
Abstract
1: Introduction
2: Incidental findings in the prenatal setting
3: Reporting incidental findings in the prenatal setting
4: Handling incidental findings: Informed consent procedures and pretest counseling in genetic testing
5: Conclusion
References
Chapter 17: Third-party sharing of genetic information
Abstract
1: Introduction
2: Disclosure of genetic data to relatives
3: Disclosure of genetic information to employers
4: Disclosure of genetic data to health insurance companies
5: Third-party sharing of genetic data in the context of biomedical research
6: Disclosure of data resulting from DTC genetic tests
7: Disclosure of data resulting from genetic interpretation services
8: Third-party sharing for forensic purposes
References
Chapter 18: Cerebral and noncerebral organoids
Abstract
1: Stem cells applications: Organoids and brain organoids
2: Ethical issues
3: Final remarks
References
Chapter 19: Cognitive enhancement: Bioethical aspects
Abstract
1: Introduction
2: Libertarian and utilitarian theories
3: Personalist and egalitarian theories
4: Hidden risks of enhancement
5: Possible future regulation about enhancement
6: Conclusion
References
Chapter 20: Risks and benefits of direct-to-consumer genetic testing in the reproductive context
Abstract
1: Introduction
2: A brief history of DTC genetic testing
3: Current status of DTC genetic testing relevant to reproductive decisions
4: Limits and risks
5: Benefits
6: Ethical issues
7: Conclusion
References
Chapter 21: Genetic immunization: Enhancement or public health measure?
Abstract
1: Introduction
2: Public health and ethics
3: Moral concepts from public health ethics
4: Ethical analysis of genetic immunization
5: Conclusions
References
Index