Consumer Genetic Technologies: Ethical and Legal Considerations

This edited volume is based on the Petrie-Flom Center’s 2019 annual conference, which brought together leading experts to explore what ethical and regulatory safeguards should be implemented and discuss the many questions raised by advancements in consumer genetics.

The conference was sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School and organized in collaboration with Nita A. Farahany, Duke Law School, and Henry T. Greely, Stanford Law School.

From the Publisher:

“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.“