Translational Research ? Bartha Maria Knoppers Canada Research - PowerPoint PPT Presentation

Best Practices in Personalized Medicine Vancouver, BC March 8-9, 2011 “Workable” Ethics for Translational Research ? Bartha Maria Knoppers Canada Research Chair in Law and Medicine Director, Centre of Genomics and Policy McGill University Ma’n H. Zawati Academic Associate Centre of Genomics and Policy McGill Universit y

Table of Contents I. Context II. Implications A. Recruitment B. Privacy C. Communication III. Conclusion

I. CONTEXT Research Ethics

I. CONTEXT Clinical Trials

I. CONTEXT Physician – Patient Relationship

I. CONTEXT Whole-Genome Sequencing

I. CONTEXT Population Biobanks

II. IMPLICATIONS A. Recruitment HapMap and 1000Genomes

II. IMPLICATIONS A. Recruitment ”Citizens” and Population Biobanks

II. IMPLICATIONS A. Recruitment Genotyping and Clinical Trials

II. IMPLICATIONS A. Recruitment Personal Genome Project

II. IMPLICATIONS B. Privacy Controlled Access Databases (ICGC)

II. IMPLICATIONS B. Privacy DataSHIELD

II. IMPLICATIONS B. Privacy Identification?

II. IMPLICATIONS C. Communication Biobanks Websites

II. IMPLICATIONS C. Communication Return of Results? Lexicon International Context and General Principles Biobanks and Populations Paediatric Research Intrafamilial Communication Deceased Individuals International Consortia

II. IMPLICATIONS C. Communication “Incidental” Findings

CONCLUSION Data-Sharing International Code of Conduct for Data Sharing in Genomic Research

CONCLUSION Genomic Research: Quo Vadis?

CONCLUSION Benefiting the « Population » Citizenry and Altruism Sustaining Research Investment Better Health Public Care Ethical, Equital and Efficient Data-Sharing Trust Planning Maximization of statistical power Translating knowledge to the clinic = Benefiting the « Personalized » Citizen