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The rise of neurotechnologies, especially in combination with artificial intelligence (AI)-based methods for brain data analytics, has given rise to concerns around the protection of mental privacy, mental integrity and cognitive liberty – often framed as “neurorights” in ethical, legal, and policy discussions. Several states are now looking at including neurorights into their constitutional legal frameworks, and international institutions and organizations, such as UNESCO and the Council of Europe, are taking an active interest in developing international policy and governance guidelines on this issue. However, in many discussions of neurorights the philosophical assumptions, ethical frames of reference and legal interpretation are either not made explicit or conflict with each other. The aim of this multidisciplinary work is to provide conceptual, ethical, and legal foundations that allow for facilitating a common minimalist conceptual understanding of mental privacy, mental integrity, and cognitive liberty to facilitate scholarly, legal, and policy discussions.
For the average person genetic testing has two very different faces: the rise of genetic testing is promoted as the democratization of genetics by enabling individuals to gain new insights into their unique makeup. At the same time, many regard genetic testing and sequencing as revealing something intensely personal and private about themselves. Genetic testing raises legal and ethical questions that loom ever larger, especially as genetic testing is becoming more commonplace, affordable, and comprehensive. Already in 2018 the global genetic testing and consumer/wellness genomics market was valued at $3.4 billion, with market analysts in 2019 predicting that it will double in value by 2025.
The chapters in this Part discuss the existing and evolving threats to privacy and discrimination of individuals that arise from the rapid growth in direct-to-consumer genetic testing. From shortcomings in the governance of genetic privacy, to evolving trends in reproductive genetics, these authors push us to think about gaps in governance of consumer genetics through both real-world and hypothetical examples.
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.
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