GuidanceConsent, privacy & ethics
Data Use
HPRC sets out ethical considerations for responsible pangenome data use.
2025
What this contributes
Covers biospecimen custodianship, consent, privacy, access and legacy planning.
The boundary of the evidence
Not a substitute for participant-specific consent.
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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Genetic Testing FAQ
NHGRI explains testing, potential consequences and limits of genetic-discrimination protection.
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Griefbots, Deadbots, Postmortem Avatars: On Responsible Applications of Generative AI in the Digital Afterlife Industry
Examines consent, transparency and retirement of AI simulations of deceased people.
2024