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Consumer Genetic Technologies: Ethical and Legal Considerations

Edited by: I. Glenn Cohen, Nita A. Farahany, Henry T. Greely, Carmel Schachar

ISBN13: 9781108812672
Published: September 2021
Publisher: Cambridge University Press
Country of Publication: UK
Format: Paperback
Price: £29.99

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For the average person, genetic testing has two very different faces. The rise of genetic testing is often promoted as the democratization of genetics by enabling individuals to gain insights into their unique makeup. At the same time, many have raised concerns that genetic testing and sequencing reveal intensely personal and private information. As these technologies become increasingly available as consumer products, the ethical, legal, and regulatory challenges presented by genomics are ever looming. Assembling multidisciplinary experts, this volume evaluates the different models used to deliver consumer genetics and considers a number of key questions: How should we mediate privacy and other ethical concerns around genetic databases? Does aggregating data from genetic testing turn people into products by commercializing their data? How might this data reduce or exacerbate existing healthcare disparities? Contributing authors also provide guidance on protecting consumer privacy and safety while promoting innovation.

Human Rights and Civil Liberties, Medical Law and Bioethics
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