ideasIdea
Store adult-onset cancer gene results from newborn genomes and disclose at 18
Newborn sequencing programmes exclude adult cancer genes because babies cannot consent. Storing those results and offering them at 18 would preserve choice and give a lifetime of prevention.
Genomics England's Generation Study sequences newborns for childhood-onset conditions only. Propose a consented pathway in which adult-onset actionable variants (BRCA, Lynch) are sequestered and offered for disclosure at 18 with counselling.
Hypothesis
At least 70% of participants opt in to deferred disclosure at 18, and carriers enter surveillance a median 15 years earlier than through current diagnosis routes.
Rationale
Avoids re-sequencing, respects autonomy, and captures carriers before cancer develops.
What would test it
Pilot consent and disclosure protocol in an existing newborn genome cohort.
Maturity
speculative
Who has to act
policy
Cost to try
Medium ($1M to $50M)
Years to first evidence
10
Bottlenecks it attacks
- Inherited risk is mostly unidentified · Most people who carry a high-risk cancer gene do not know it until they or a relative gets cancer.