Genetic discrimination 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. The Regulatory & Ethics Work Stream (REWS) Genetic Discrimination group has produced this document that explores the current landscape of genetic discrimination, existing laws, current challenges, and the implications of genetic discrimination on data sharing projects. The fear of genetic discrimination has been shown to dissuade individuals from participating in genetic research or clinically recommended genetic testing, which can impact research projects. International data sharing compounds genetic discrimination issues further, as countries have different privacy and discrimination laws or expectations. The scope of data sharing, the incidence of genetic discrimination, available protections, and ethical and cultural norms relevant to research projects should also be considered for informed consent documents.

Jump to...

Benefits

• Explores genetic discrimination and how it impacts people and communities
• Provides resources to help institutions develop policies to prevent genetic discrimination
• Provides accessible information to researchers about genetic discrimination to address inquiries from participants
• 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, data custodians, ethics review committees, data protection authorities, and research institutes