{"entity":{"id":"idea-prev-deferred-disclosure-newborn-genomes","kind":"idea","name":"Store adult-onset cancer gene results from newborn genomes and disclose at 18","aka":[],"tldr":"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.","asOf":"2026-09-08","links":[{"label":"Genomics England","url":"https://www.genomicsengland.co.uk"}],"tags":[],"related":[],"cancers":[],"sections":["prevention"],"technologies":["germline-testing","wes-wgs"],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-hereditary-risk"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"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.","test":"Pilot consent and disclosure protocol in an existing newborn genome cohort.","maturity":"speculative","actor":"policy","cost":"medium","horizonYears":10},"route":"/ideas/idea-prev-deferred-disclosure-newborn-genomes/","neighbours":{"section":[{"id":"prevention","kind":"section","name":"Prevention & Risk","route":"/fronts/prevention/"}],"technology":[{"id":"germline-testing","kind":"technology","name":"Germline (hereditary) testing","route":"/technologies/germline-testing/"},{"id":"wes-wgs","kind":"technology","name":"Whole-exome & whole-genome sequencing","route":"/technologies/wes-wgs/"}],"bottleneck":[{"id":"b-hereditary-risk","kind":"bottleneck","name":"Inherited risk is mostly unidentified","route":"/bottlenecks/b-hereditary-risk/"}]}}