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Examines the ethical, legal, and regulatory challenges presented as genomics become commonplace, easily available consumer products.
Table des matières
Part I. Consumer genetic technologies: Rights, liabilities, and other obligations introduction: I. Glenn Cohen; 1. Liability implications of direct-to-consumer genetic testing Gary E. Marchant, Mark Barnes, Ellen W. Clayton and Susan M. Wolf; 2. Consuming genetics as a life insurance consumer Anya E. R. Prince; 3. In favor of an action for genetic conversion Jessica L. Roberts; 4. Direct to consumer genomics and personal health data Jorge L. Contreras; 5. Governance in the Era of CRISPR and DIY-Bio: Regulatory guidance of human genome editing at the national and global levels Scott J. Schweikart; Part II. Privacy in the age of consumer genetics introduction: Nita A. Farahany; 6. Non-Invasive prenatal genome sequencing: Ethical and policy post-birth implications Vardit Ravitsky; 7. The myth of "Anonymous" gamete donation in the age of direct-to- consumer genetic testing Seema Mohapatra; 8. Improving commercial genetic data sharing policy Kayte Spector-Bagdady; 9. Genetic Paparazzi Yaniv Heled and Liza Vertinsky; Part III. Tinkering with ourselves: The law and ethics of DIY genomics introduction: Henry T. Greely; 10. Programming our genomes, programming ourselves: The moral and regulatory challenge of regulating Do-It-Yourself gene editing Barbara J. Evans; 11. Governing non-traditional gene editing Maxwell J. Mehlman and Ronald A. Conlon; 12. Finding a regulatory balance for genetic biohacking Patricia J. Zettler, Christi J. Guerrini and Jacob S. Sherkow; Part IV. Consumer genetics and identity Introduction: Carmel Shachar; 13. Generational failures of law and ethics: Rape, mormon orthodoxy, and the revelatory power of Ancestry DNA Kif Augustine-Adams; 14. Precision medicine and the resurgence of race in genomic medicine Jonathan Kahn; 15. Losing our minds? Direct-to-Consumer genetic testing and Alzheimer's disease Emily Largent; 16. Investigative genetic genealogy and the problem of familial forensic identification Natalie Ram; Part V. The impact of genetic information introduction: Melissa Uveges; 17. An ethical framework for genetic counseling in the genomic era Leila Jamal, Will Schupmann and Benjamin E. Berkman; 18. Physician-Mediated elective whole genome sequencing tests: Impacts on informed consent Emily Qian, Magalie Leduc, Rebecca Hodges, Bryan Cosca, Ryan Durigan, Laurie McCright, Doug Flood and Birgit Funke; 19. Privacy best practices for Direct-to-Consumer genetic testing services: Are industry efforts at self-regulation sufficient? James W. Hazel; 20. Regulatory and medical aspects of DTC genetic testing Catherine M. Sharkey, Xiaohan Wu, Michael F. Walsh and Kenneth Offit.
A propos de l'auteur
I. Glenn Cohen is the James A. Attwood and Leslie Williams Professor of Law at Harvard Law School. He is one of the world's leading experts on the intersection of bioethics and the law, as well as health law. He is the author of more than 150 articles in venues like the New England Journal of Medicine, JAMA, Science and the Harvard Law Review, and the author, editor, or co-editor of 15 books. He has appeared on or been covered by media outlets such as PBS, NPR, ABC, CNN, MSNBC, the New York Times, and the Boston Globe. Professor Cohen has also been a Radcliffe Institute and Hastings Center Fellow.Nita A. Farahany is Distinguished Professor of Law and Philosophy at Duke University. She is a widely published scholar on the ethical, legal, and social implications of the biosciences and emerging technologies, and a frequent commentator at international conferences including the Aspen Ideas Festival, TED, and the World Economic Forum.Henry T. Greely is the Deane F. and Kate Edelman Johnson Professor of Law at Stanford University where he specializes in ethical, legal, and social issues arising from the biosciences. He is the author of The End of Sex and the Future of Human Reproduction (2016) and CRISPR People: The Science and Ethics of Editing Humans (2021).Carmel Shachar is the Executive Director of the Petrie-Flom Center at Harvard Law School. Her work focuses on access to care and digital health. She is the co-editor of several other volumes including Transparency in Health Care and Disability, Law, Health, and Bioethics.
Résumé
As genetic testing becomes more commonplace, affordable, and comprehensive, the legal and ethical issues surrounding these technologies loom ever larger. Assembling experts from diverse fields, this volume considers key questions around protecting consumer safety and privacy throughout the many different models used to deliver consumer genetics.
