Consumer Genetic Technologies (eBook, PDF)

Ethical and Legal Considerations
Redaktion: Cohen, I. Glenn

• Format: PDF

Produktbeschreibung

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.

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Produktdetails

• Verlag: Cambridge University Press
• Erscheinungstermin: 16. September 2021
• Englisch
• ISBN-13: 9781108858014
• Artikelnr.: 66183262

Inhaltsangabe

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.