Title Consumer genetic technologies : ethical and legal considerations / edited by I. Glenn Cohen, Harvard Law School, Nita A. Farahany, Duke University School of Law, Henry T. Greely, Stanford Law School, Carmel Shachar, Harvard Law School

Published Cambridge : Cambridge University Press, 2021

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Description 1 online resource (x, 291 pages) Contents Liability implications of direct-to-consumer genetic testing / Gary E. Marchant, Mark Barnes, Ellen W. Clayton, and Susan M. Wolf -- Consuming genetics as a life insurance consumer / Anya E.R. Prince -- In favor of an action for genetic conversion / Jessica L. Roberts -- Direct-to-consumer genomics and personal health data / Jorge L. Contreras -- Governance in the era of CRISPR and DIY-Bio regulatory guidance of human genome editing at the national and global levels / Scott J. Schweikart -- Noninvasive prenatal genome sequencing ethical and policy post-birth implications / Vardit Ravitsky -- The myth of "anonymous" gamete donation in the age of direct-to-consumer genetic testing / Seema Mohapatra -- Improving commercial genetic data-sharing policy / Kayte Spector-Bagdady -- Genetic paparazzi / Yaniv Heled and Liza Vertinsky -- Programming our genomes, programming ourselves : the moral and regulatory challenge of regulating do-it-yourself gene editing / Barbara J. Evans -- Governing nontraditional gene editing / Maxwell J. Mehlman and Ronald A. Conlon -- Finding a regulatory balance for genetic biohacking / Patricia J. Zettler, Christi J. Guerrini, and Jacob S. Sherkow -- Generational failures of law and ethics : rape, Mormon orthodoxy, and the revelatory power of ancestry DNA / Kif Augustine-Adams -- Precision medicine and the resurgence of race in genomic medicine / Jonathan Kahn -- Losing our minds? direct-to-consumer genetic testing and Alzheimer's disease / Emily Largent -- Investigative genetic genealogy and the problem of familial forensic identification / Natalie Ram -- An ethical framework for genetic counseling in the genomic era / Leila Jamal, Will Schupmann, and Benjamin E. Berkman -- 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 -- Privacy best practices for direct-to-consumer genetic testing services : are industry efforts at self-regulation sufficient? / James W. Hazel -- Regulatory and medical aspects of direct-to-consumer genetic testing / Catherine M. Sharkey, Xiaohan Wu, Michael F. Walsh, and Kenneth Offit Summary 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 Notes Vendor-supplied metadata Subject Human chromosome abnormalities -- Diagnosis -- Law and legislation. Data protection -- Law and legislation. Privacy, Right of. Medical genetics -- Law and legislation. Human genetics -- Law and legislation. Human chromosome abnormalities -- Diagnosis -- Moral and ethical aspects Genetic counseling. Genetic screening. Human beings. Ethics Genetic Counseling Genetic Testing Humans Homo sapiens (species) LAW -- Medical Law & Legislation. Genetic screening Genetic counseling Data protection -- Law and legislation Human chromosome abnormalities -- Diagnosis -- Law and legislation Human chromosome abnormalities -- Diagnosis -- Moral and ethical aspects Human genetics -- Law and legislation Medical genetics -- Law and legislation Privacy, Right of Form Electronic book Author Cohen, I. Glenn, editor Farahany, Nita A., editor Greely, Henry T., editor Schachar, Carmel, 1985- editor ISBN 9781108874106 110887410X

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