Genetic discrimination prevented only by a voluntary insurance code

The UK has no statute banning genetic discrimination, unlike the US (GINA) or Canada (Genetic Non-Discrimination Act). Insurers' use of predictive genetic tests is limited only by the voluntary ABI Code on Genetic Testing and Insurance (three-year review, 2025), binding only signatories; employment protection is indirect via the Equality Act 2010. Meanwhile the state is normalising population genomics: the Generation Study is sequencing 100,000 newborns, and the 23andMe breach (£2.31m ICO fine, 2025) showed how genomic data leaks. The Progress Educational Trust and academics have called for legislation; no organisation owns the campaign.

Newborns sequenced today carry that data for 80+ years under a code that can be rescinded by an industry board. Fear of genetic disadvantage measurably suppresses research participation and screening uptake, undermining the UK's genomics strategy itself.

A statutory prohibition on genetic discrimination in insurance and employment, plus statutory rules governing law-enforcement access to research genomic databases (NGRL, UK Biobank).

// State-led: Instrument: statutory prohibition on genetic discrimination plus law-enforcement access rules.

No statute bars genetic discrimination, only a rescindable industry code, and nobody owns the campaign; foreign models exist but stakes are contained for now with no dated trigger.