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Consumer Genetic Technologies: Ethical and Legal Considerations

Consumer Genetic Technologies: Ethical and Legal Considerations

Name: Consumer Genetic Technologies: Ethical and Legal Considerations
Brand: Cambridge University Press
SKU: 9781108812672
Price: 504.40 HKD
Availability: InStock
Author: I. Glenn Cohen; Nita A. Farahany; Henry T. Greely; Carmel Schachar
ISBN: 9781108812672

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

Cambridge University Press September 2021

Specifications

ISBN-13: 9781108812672
Publisher: Cambridge University Press
Publication: September 2021
Format: Paperback
Jurisdiction: U.K. ? Countri(es) for reference only

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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.

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

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Consumer Genetic Technologies: Ethical and Legal Considerations

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Table of Contents

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