Making genetic testing work for people with cardiomyopathy

For a person living with cardiomyopathy and their healthcare team, a genetic test can answer critical questions: what’s causing the condition, which therapies offer greatest benefit, and who else in the family might be at risk? But testing is not available to all, and even when performed, the result is only as useful as the system around it. Without the infrastructure, governance and skilled people to access, share and use genetic data, much of that value is lost.

Today, too many people miss out: only 37% of adults with cardiomyopathy receive genetic testing. And more than one in three experts surveyed did not have access to a dedicated cardiogenetic service or genetic laboratory.

Data are a big part of the problem. Senior experts across 12 countries told ICoN they struggle to access and share data to support care and research. Guidance on managing data varies across the EU, as do the rules for sharing it across borders, particularly for post-mortem data. The new work shows that strong data infrastructure is becoming as essential to personalised care as sustainable funding, a skilled workforce and services built around people.

ICoN had, in 2023, identified access to genetic testing as an organisational policy goal. In 2025, the emerging EU Safe Hearts Plan offered an opportunity to secure EU funding and collaboration in this vital field. To fully seize the opportunity, ICoN commissioned HPP to convene key experts and build a compelling policy case, complete with practical asks based on EU precedent and competencies, as a focal pillar of its future policy campaigning.

Two new resources set out the way forward: Genetic testing in cardiomyopathy: ensuring our future health systems leave no family behind looks at the system changes needed to make genetic testing fair for everyone, including stronger systems and infrastructure for sharing data. Genetic testing in cardiomyopathy: recommendations for the European Union turns this evidence into recommendations for EU policymakers, including action through European initiatives to help genetic data move between systems and be put to use.

For more information, visit the project page