Main description:

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.

Contents:

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.