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

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

Jan 07, 2024 379 likes •599 views

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

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SLIDE 1

“Workable” Ethics for Translational Research?

Best Practices in Personalized Medicine Vancouver, BC March 8-9, 2011

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 University

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SLIDE 2

Table of Contents

I. Context

  • II. Implications

A. Recruitment B. Privacy C. Communication

  • III. Conclusion
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SLIDE 3

Research Ethics

  • I. CONTEXT
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SLIDE 4

Clinical Trials

  • I. CONTEXT
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SLIDE 5

Physician – Patient Relationship

  • I. CONTEXT
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SLIDE 6

Whole-Genome Sequencing

  • I. CONTEXT
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SLIDE 7

Population Biobanks

  • I. CONTEXT
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SLIDE 8

HapMap and 1000Genomes

  • II. IMPLICATIONS
  • A. Recruitment
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SLIDE 9

”Citizens” and Population Biobanks

  • II. IMPLICATIONS
  • A. Recruitment
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SLIDE 10

Genotyping and Clinical Trials

  • II. IMPLICATIONS
  • A. Recruitment
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SLIDE 11

Personal Genome Project

  • II. IMPLICATIONS
  • A. Recruitment
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SLIDE 12

Controlled Access Databases (ICGC)

  • II. IMPLICATIONS
  • B. Privacy
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SLIDE 13

DataSHIELD

  • II. IMPLICATIONS
  • B. Privacy
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SLIDE 14

Identification?

  • II. IMPLICATIONS
  • B. Privacy
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SLIDE 15

Biobanks Websites

  • II. IMPLICATIONS
  • C. Communication
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SLIDE 16

Return of Results?

  • II. IMPLICATIONS
  • C. Communication

Lexicon International Context and General Principles Biobanks and Populations Paediatric Research Intrafamilial Communication Deceased Individuals International Consortia

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SLIDE 17

“Incidental” Findings

  • II. IMPLICATIONS
  • C. Communication
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SLIDE 18

Data-Sharing

CONCLUSION

International Code of Conduct for Data Sharing in Genomic Research

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SLIDE 19

Genomic Research: Quo Vadis?

CONCLUSION

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SLIDE 20

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

Public Trust Better Health Care Planning

CONCLUSION