Ethical, Legal and Social Implications

CCNA-Icon-Green-BG-Circle-EthicalLead: Julie Robillard and John Fisk

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Ethical, Legal and Social Implications (ELSI) will help develop projects to explore the ethical, legal, and social implications related to neurodegenerative research, and, at the same time, respond to requests for advice and support from CCNA researchers.

In CCNA Phase II (2019-2024), under the leadership of Dr. Robillard (Chair, Dr. John Fisk, Co-chair), the ELSI team will build and expand on the strengths and expertise developed during Phase I. In Phase II, ELSI members will continue to deliver evidence-based, high impact guidance on key ELSI issues traditionally associated with basic and clinical research in neurodegeneration in aging and will proactively explore and address novel and emerging ethical, legal and social implications at the forefront of neurodegeneration research. Throughout Phase II, the ELSI research community will engage with older adults and their caregivers and will work collaboratively with the Engagement of People with Lived Experience of Dementia (EPLED) program) as well as with basic and clinical CCNA researchers to identify further priorities.

Phase II objectives:

  • The validation of a novel Canadian tool for competency assessment, the Grille d’Évaluation Multidisciplinaire Aptitudes (GEMA);
  • The development of an ethical framework for the use of social media in dementia trials;
  • The identification of barriers and motivators to dementia research participation; and
  • The examination of the benefits and harms of disclosure of research results in the COMPASS-ND study.

The ELSI team will also collaborate closely with the CAN-THUMBS UP (a new platform on prevention research being developed as part of CCNA Phase II) investigators to proactively identify, address and research ethical issues in multi-domain prevention trials, with a special attention to activities related to patient engagement in research.

 

 

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