# Store adult-onset cancer gene results from newborn genomes and disclose at 18

Source: https://onco.cc/ideas/idea-prev-deferred-disclosure-newborn-genomes/  
OnCo record `idea-prev-deferred-disclosure-newborn-genomes` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Summary

Newborn sequencing programmes such as Genomics England's Generation Study exclude adult-onset cancer genes because babies cannot consent, so this idea sequesters actionable adult-onset variants in BRCA and Lynch genes and offers them for disclosure at 18 with counselling. This avoids re-sequencing, respects autonomy and captures carriers before cancer develops, so that they enter surveillance far earlier than through current diagnosis routes. The test is a pilot consent and disclosure protocol in an existing newborn genome cohort. Speculative in maturity, it addresses the bottleneck Inherited risk is mostly unidentified and links to germline testing and whole-genome sequencing.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- 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.
- Proposed test: Pilot consent and disclosure protocol in an existing newborn genome cohort.
- Maturity: speculative
- Actor: policy

## Sources

- Genomics England: https://www.genomicsengland.co.uk

## Connected records

- fronts: [Prevention & Risk](https://onco.cc/fronts/prevention/)
- technologies: [Germline (hereditary) testing](https://onco.cc/technologies/germline-testing/), [Whole-exome & whole-genome sequencing](https://onco.cc/technologies/wes-wgs/)
- bottlenecks: [Inherited risk is mostly unidentified](https://onco.cc/bottlenecks/b-hereditary-risk/)

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