Handling sensitive information.
WHAT MAKES GENOMIC DATA DISTINCTIVE
It is identifying, permanently It reveals information about relatives who did not consent It cannot be revoked or changed after disclosure Its significance may change as knowledge advances
WHY THAT SECOND POINT MATTERS
Consent from one person exposes information about their family.
WHAT CONSENT MUST COVER
What is collected What analyses may be performed Whether data may be shared, and with whom How long it is retained What happens to findings
WHAT INCIDENTAL FINDINGS ARE
Discoveries unrelated to the study's purpose, with health implications.
WHAT TO DECIDE IN ADVANCE
Whether and how they are returned.
WHAT ANONYMISATION DOES NOT ACHIEVE HERE
Genomic data can be re-identified from reference databases.
WHAT THAT MEANS
Treat it as identifying, regardless of removal of names.
WHAT OBLIGATIONS MAY APPLY
Those relating to personal and health data, which are strict in most jurisdictions.
Take advice on your position.
WHAT TO IMPLEMENT
Access controls Encryption at rest and in transit Audit logging Defined retention
WHAT TO DOCUMENT
Who accessed what, and why.
