New York, NY: Cambridge University Press (2021)
AbstractFor 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.
Generational failures of law and ethics : rape, Mormon orthodoxy, and the revelatory power of ancestry DNA.Kif Augustine-Adams
Regulatory and medical aspects of direct-to-consumer genetic testing.M. Sharkey Catherine, Michael Xiaohan Wu & Kenneth Offit F. Walsh
Physician-mediated elective whole genome sequencing tests : impacts on informed consent.Magalie Leduc Emily Qian, Bryan Cosca Rebecca Hodges, Laurie McCright Ryan Durigan & Birgit Funke Doug Flood
Programming our genomes, programming ourselves : the moral and regulatory challenge of regulating do-it-yourself gene editing.Barbara J. Evans
Liability implications of direct-to-consumer genetic testing.E. Marchant Gary, Ellen Mark Barnes, Susan W. Clayton & M. Wolf
Privacy best practices for direct-to-consumer genetic testing services : are industry efforts at self-regulation sufficient?James W. Hazel
An ethical framework for genetic counseling in the genomic era.Leila Jamal, Will Schupmann & Benjamin E. Berkman
The myth of "anonymous" gamete donation in the age of direct-to-consumer genetic testing.Seema Mohapatra
Finding a regulatory balance for genetic biohacking.J. Zettler Patricia, J. Guerrini Christi & S. Sherkow Jacob
Governance in the era of CRISPR and DIY-Bio regulatory guidance of human genome editing at the national and global levels.Scott J. Schweikart
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