Genetic Discrimination Toolkit

Explores key issues and the implications of addressing genetic discrimination

Genetic discrimination involves unfair treatment and profiling based on a person’s genetic information. The GA4GH Regulatory & Ethics Work Stream (REWS) has produced a document that explores key topics within genetic discrimination, including the meaning of genetic discrimination, existing evidence of genetic discrimination, implications of genetic discrimination in the sharing of genomic and health data, and information that should be shared with research participants.

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  • 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, and ethics review committees

Image summary: The Genetic Discrimination Toolkit provides resources to help genomic data initiatives and policymakers address genetic discrimination and stigmatisation.

Community resources

Dive deeper into this product! The first toolkit item, the Genetic Discrimination: Implications for Data Sharing Projects document, explores key topics related to genetic discrimination in research. The document defines genetic discrimination as “involving the differential adverse treatment, or unfair profiling, of an individual relative to the rest of the population based on actual or presumed genetic/genomic information and other “omic” data.” This can have negative impacts on people, such as limited opportunities and psychological, social, and economic disadvantage. With this foundation, the document discusses existing evidence of genetic discrimination, existing laws on genetic discrimination, the implications of genetic discrimination for sharing genomic and related health data, and information research participants should be told about genetic discrimination in consent forms.







Working meeting to explore key topics and develop resources harmonizing legal and ethical norms around genetic discrimination

ad hoc
ad hoc
1 Hour

Don't see your name? Get in touch:

  • Yvonne Bombard
    University of Toronto, Unity Health Toronto
  • Shu Hui Chen
    NIH National Heart, Lung, and Blood Institute (NHLBI)
  • Megan Doerr
    Sage Bionetworks
  • Yosr Hamdi
    Institut Pasteur de Tunis
  • Saumya Jamuar
    KK Women's and Children's Hospital
  • Yann Joly
    Centre of Genomics and Policy
  • Beatrice Kaiser
    McGill University / Université McGill, Centre of Genomics and Policy
  • Jamal Nasir
    University of Northampton
  • Maili Raven-Adams
    The Nuffield Council on Bioethics
  • Rosalyn Ryan
    Healthfox US Inc
  • Diya Uberoi
    McGill University / Université McGill, Centre of Genomics and Policy