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Exploring Ethical, Legal, and Societal Aspects of Human Genomics in North America

This workshop, led by Dr. Denise Avard from the Université de Montréal, discusses the ethical, legal, and societal issues surrounding human genomics research in North America. It covers recent studies in population genomics, public understanding, ethical concerns, and challenges in clinical applications. Key themes include capacity building for researchers, the intersection of health and genetics, regulation of genetic data, and the integration of genomic services into healthcare. The workshop aims to enhance knowledge transfer and promote equitable access to genomic research and technology.

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Exploring Ethical, Legal, and Societal Aspects of Human Genomics in North America

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  1. SSHRC - ERA - SAGE WorkshopResearch on the Ethical, Legal and Societal Aspects of Human Genomics: North America Denise Avard PhDDirector of Research Genetics and Society Project Centre de recherche en droit public Université de Montréal

  2. Plan of the Presentation • GE3LS Scan of “Recent” Genomic Research • GE3LS Emerging Issues: Key informants • GE3LS Research Challenges

  3. GE3LS Human Genomic Research: Scan of Recent Research Population Genomics • Public understanding and engagement • Ethical, legal issues in population research • Capacity building (REB, researchers) Clinical Applications • Exchanges between health professionals and patients (mainly familial cancers and genetic testing) • Minority views regarding genetic testing • Psycho-social impacts of genetic information

  4. GE3LS Human Genomic Research: Scan of Recent Research Health Care System • Governance, policy development (genetic testing, privacy) • Commercialization • Education of health professionals Non-medical Context • Public education of genetics • Human Dignity and Life • Race, ethnicity and social divide

  5. A New EraEmerging Issues

  6. Orientation of New Genomics Population Communities Individual Family

  7. GE3LS Emerging Issues: Key informant suggestions Medical Research • Unequal access to genomic research data and funds • Understanding what is normal • Standards in ethical review process • Pharmacogenomics Genetic Services • Integration of GELS into mainstream medicine • Susceptibility testing and screening • Reproductive care, pre-natal/pre implantation • Testing children and adolescents • Communicating “risk” information

  8. GE3LS Emerging Issues: Key informant suggestions Health Care System • Regulatory oversight • Public health • Equitable access to genetic counselling & support services • Integration GELS into health policy Genetic Databases (tissues, bio-banks, registries) • Governance (use of, access to, tissues and data) • Large scale databases ( e.g. Cartagene, bloodspots) • Consent for re-use of data or for unspecified uses • Commercialization

  9. GE3LS Emerging Issues : Key informant suggestions Non Medical Issues • Community consultation/public engagement • Understanding normal traits, behaviour, relationships between race, ethnicity and genomics • Privacy of genetic information( e.g. third parties) • Commercial (e.g. patents / licensing procedures / open access) Classical dilemmas are unresolved

  10. GE3LS Research Challenges • Multidisciplinary Competence ( developing awareness and establishing networks) • Knowledge Transfer ( educating medical professionals, informing public policy) • Integration of GE3LS into Genomic Projects

  11. GE3LS Research Challenges • Resources (building GELS capacity, databases) • Public/Private Funding • Large and/or Small Projects

  12. Conclusions Research Challenges • Multidisciplinary • Knowledge transfer • Integration • New Genomics • Susceptibility • Reproductive • Public Health

  13. Key informants SSHRC Team Lucie Marisa Bucci Béatrice Coly Dominique Gauthier Francois Brouillet Thank you !

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