Genomic Incidental Findings: Duty to Disclose Versus Duty to Protect
DOI:
https://doi.org/10.5281/zenodo.22686263Keywords:
incidental findings, secondary findings, genomic sequencing, duty to warn, research ethicsAbstract
Genomic sequencing routinely uncovers findings unrelated to the reason testing was ordered, forcing
clinicians, researchers, and courts to weigh a duty to disclose information that could prevent harm against a
duty to protect patients, participants, and third parties from information they did not seek and may not want.
This review traces how that tension has been managed across four settings: clinical exome and genome
sequencing under the ACMG's evolving secondary findings recommendations, research biobanking,
disclosure obligations toward biological relatives following cases such as ABC v St George's, and pediatric
sequencing, where the person most affected cannot yet consent.
Across these settings, the clearest point of convergence is that clinical actionability, rather than novelty or
scientific interest, should trigger disclosure, while the least settled question is what is owed to people, chiefly
relatives, who were never tested at all.
We argue that actionability thresholds, family notification protocols, and pediatric-specific safeguards should
be treated as related but distinct policy problems rather than folded into a single incidental-findings policy.
The review concludes that defensible institutional practice requires calibrating disclosure obligations to
actionability and life stage rather than adopting a uniform rule for all incidental genomic findings.
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