Privacy, Data Protection and Security in the Context of Direct-to-Consumer Genetic Testing Services
Privacy, Data Protection and Security in the Context of Direct-to-Consumer Genetic Testing Services
This chapter provides a broad overview of privacy, data protection and security issues raised by DTC services. This includes discussion of the EU’s General Data Protection Regulation (GDPR), the UK’s Data Protection Legislation, and a brief discussion of US and Canadian Privacy Law. It also covers secondary use of genetic databases, the Future of Privacy Forum’s Privacy Best Practices for Consumer Genetic Testing Services, and Indigenous Peoples and Data Sovereignty.
Keywords: GDPR, data protection, privacy policies, Data Protection Act 2018, Genetic Non-Discrimination Act 2017, GNA, data sovereignty, Golden State Killer, privacy notices, data security, Pribot, GEDmatch
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