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Plan of the Presentation GE 3 LS Scan of “Recent” Genomic Research

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

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Plan of the Presentation GE 3 LS Scan of “Recent” Genomic Research

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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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