GuidanceConsent, privacy & ethics
Data Use
HPRC sets out ethical considerations for responsible pangenome data use.
2025
Ethics researchConsent, privacy & ethics
Griefbots, Deadbots, Postmortem Avatars: On Responsible Applications of Generative AI in the Digital Afterlife Industry
What this contributes
Examines consent, transparency and retirement of AI simulations of deceased people.
The boundary of the evidence
Ethical analysis, not evidence of benefit or identity preservation.
Why it belongs here
Genomic data can reveal information about relatives as well as the donor. A life archive may contain other people's words and images. Consent must address access, reuse, withdrawal, inheritance and any future simulation. Anonymization should never be treated as a complete genomic privacy solution.
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GuidanceConsent, privacy & ethics
Genetic Testing FAQ
NHGRI explains testing, potential consequences and limits of genetic-discrimination protection.
Resource
GuidanceConsent, privacy & ethics
Governance Best Practices - NCI
Covers biospecimen custodianship, consent, privacy, access and legacy planning.
2026