Genetic discrimination (GD) involves an individual or a group being negatively treated, unfairly profiled, or harmed, relative to the rest of the population, on the basis of actual or presumed genetic characteristics. For decades, GD has been a global phenomenon that impacts fundamental human rights such as dignity, justice and equity. GD occurs not only in healthcare and insurance but also in employment, sports, education, immigration, housing, and forensic profiling. To address the growing burden of GD, states worldwide have adopted different legal frameworks. Despite these initiatives, concerns about GD persist and countries struggle on how to best approach this evolving issue. 

Formed by the Regulatory & Ethics Work Stream (REWS), the Genetic Discrimination group — in collaboration with the Genetic Discrimination Observatory — aims to provide resources to support the development of policies to protect individuals or groups from genetic discrimination. In January 2022, the group produced a document that explores the current landscape of genetic discrimination, what we know, current challenges, and the implications of genetic discrimination on data sharing projects. The group has also finalized a GD Position Statement, based on its previous work, including a proposed consensus definition of GD and a Delphi study that identified the key elements of an optimal genetic non-discrimination policy. The Position Statement is now under final review by the GA4GH Product Steering Committee for approval in January 2026.

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Benefits

• Explores genetic discrimination and how it impacts people and communities
• Provides resources to help institutions develop policies to prevent genetic discrimination
• Promotes international harmonisation of legal and ethical norms addressing genetic discrimination
• Enables better communication between genomic researchers and patients of diverse nationalities and cultures

Target users

Researchers, clinicians, clinical laboratories, ethics review committees, data protection authorities, research participants & patient communities, public, and research institutes