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Consumer Genetic Technologies: Ethical and Legal Considerations

Consumer Genetic Technologies: Ethical and Legal Considerations

  • 作者:
  • 出版商: Cambridge University Press
  • ISBN: 9781108812672
  • 出版时间 September 2021
  • 规格: Paperback
  • 适应领域: U.K. ? 免责申明:
    Countri(es) stated herein are used as reference only
¥451.20
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  • 描述 
  • 大纲 
  • 详细

    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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