Global Perspectives of Regulating Genetic Data in Scientific Research: Beyond Privacy?
summary
23andMe sells its database for about $200m after bankruptcy, sparking calls for deletion despite prior consent; forensic labs use population databases to compute match probabilities for ethnic groups; EU mixes GDPR with EHDS, keeping member‑state consent exceptions and an EHDS general opt‑out with carve‑outs for genetic data; US relies on deidentification, NIH controlled‑access and sectoral rules while restricting some cross‑border transfers; China treats human genetic resources as state sovereign assets and requires security assessments before overseas transfers.
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chapters (9)
- 0:00Genetic data regulation challenges
- 1:48Why genetic data is special
- 3:33Global genetic data regulation
- 4:56Privacy vs genetic data realities
- 14:29Regulating genetic data in US
- 25:29EU approach to genetic data
- 37:21China's biosecurity framework
- 49:51Q&A on genetic data rights
- 1:01:50Future genetic data governance
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