Health equity: Why understanding genetics must be for everyone

Health equity—the principle that everyone should have a fair opportunity to achieve their best possible health—is an essential foundation for modern healthcare. As science advances, so too must our efforts to ensure that those advances benefit everyone, not just those with access, education, or privilege. This is also the case in relation to the field of genetics.

Genetic information can help individuals understand their health risks, make informed medical decisions, and plan for the future. However, when this information is difficult to access and understand for lay people, there is a risk of widening existing health disparities. Health equity concerning genetics does not only correspond to making genetic services available but also ensuring that everyone can comprehend and use the information they receive.

The equity gap in genetic services

As genetic testing becomes more accessible, so do questions about how it is accessed and understood. Many people still face significant barriers—language, potential cost, digital access, or limited health literacy—that prevent them from benefiting from insight into their genetic disposition. Additionally, cultural stigma surrounding hereditary conditions may discourage open dialogue. Moreover, terms used during genetic counselling, such as hereditary or mutation, may feel abstract or intimidating.

The field of genetics has a lot of very valuable health information to offer, but without targeted efforts to address the barriers mentioned above, users might not be able to benefit from the fields of genetics, which would not address inequity in healthcare. Ensuring equitable access to genetic information means considering social determinants of health, adapting communication strategies, and investing in resources that are inclusive, diverse, and people centred.

Why understanding matters as much as access

When offering genetic testing, it is important that people  understand the implications of the results. What does it mean to have a 'genetic predisposition'? Should someone get tested if a relative is diagnosed with a neurodegenerative disease? What happens next? These questions demand thoughtful communication and ongoing support.

Equity means that anyone can understand their health options, and make informed choices based on their situation. This understanding empowers people to make choices that reflect their values, needs, and realities.

Genes4All: A step toward equitable genetic literacy

The Genes4All project addresses this equity challenge by creating digital, co-designed tools that support families affected by neurodegenerative diseases. This is done through developing both a serious game, as well as a digital guide, to enhance access and understanding of genetics and genetic counselling. These tools are designed to be interactive, narrative-driven and easy to access—both emotionally and practically—for people of different ages, backgrounds, and literacy levels.

Funded through the Erasmus+ programme, Genes4All brings together partners from across Europe to make genetics understandable and inclusive. 

Building a more inclusive future for health

Health equity in genetics, means designing systems where every person, regardless of background, education, or ability, can fully participate in decisions about their health.

It requires efforts from many different actors, in order to achieve better equity in genetics, and health in general, and Genes4All is a concrete and important step in the right direction to improve access to health care services across Europe.