Communique #1 from the GC's GE3LS Network

NEWS FROM THE NETWORK: ISSUE 1, Summer 2016

 

WELCOME MESSAGE
DR CHRISTOPHER MCCABE & DR FRANCOIS ROUSSEAU

Welcome to the first edition of the Precision Medicine Policy Network newsletter.

There are significant barriers to the successful implementation of Precision Medicine technologies both in Canada and internationally. Many barriers are related to the ethical, environmental, economic, legal and social aspects of Genomics research (GE3LS). Established and funded by Genome Canada, the Precision Medicine Policy Network will bring together GE3LS researchers funded through the 2012 Genomics and Personalized Health (GAPH) Large Scale Research Projects and interested stakeholders. We will focus on developing knowledge and consensus best practice guides in four high priority theme areas:

(1) Research Ethics
(2) Health Economics and HTA
(3) KT and Implementation
(4) Intellectual Asset Management and Commercialization

Check our website for information about upcoming workshops, training programmes and other stakeholder engagement activities. We will also post consultation papers and good practice consensus statements.  

Thank you for engaging with this novel Genome Canada initiative. We look forward to working with you over the next two and half years, supporting best practice in the translation of Precision Medicine technologies in Canada.

Best wishes

Christopher McCabe and Francois Rousseau
Principle Investigators
Precision Medicine Policy Network

 
 

The Government of Canada is pleased to support this exceptional Network, which is paving the way for personalized medicine to be integrated more fully into the health care system for the benefit of Canadians. 
The Honourable Kirsty Duncan, Minister of Science

We are proud to support this new Network that will encourage synergies and sharing of expertise, methods and tools that will lead to improved outcomes and impacts on the health of Canadians.  
Mr. Marc LePage, President and CEO, Genome Canada

 

 
 
 
 
 

FEATURE
THEME 1: RESEARCH ETHICS REVIEW (RER)

Led by Bartha M. Knoppers

PUBLICATIONS

(1) Ethics review for international data-intensive research (Science)
​(a collaboration between members of the RER Network Theme and members of the Global Alliance for Genomics & Health Task Team for Ethics Review Equivalence)
(2) 
How mutually recognizable is mutual recognition? An international terminology index of research ethics review policies in the USA, Canada, UK and Australia (Personalized Medicine)
(3) Streamlining ethical review of data intensive research (BMJ)

WORKSHOPS

Theme 1 has held two expert consensus-building workshops.The first brought together international genomics researchers and policy actors working in the area of ethics review mutual recognition. The second, a pre-conference workshop at the joint Canadian Association of Research Ethics Board and Canadian Bioethics Society conference, focused on reforms to research ethics review policy currently underway across Canada.  A panel of key policy actors discussed motivations behind ethics review reforms, procedural implications for collaborative biomedical research, and lessons learned.

OUTCOMES

Workshop outcomes include the development of a qualitative database of provincial ethics review reforms, including documentary data, press releases, MOUs and official legislative changes (V. Rahimzadeh). 

Workshops will inform the modalities of ethics review mutual recognition that will be brought forward as an overarching deliverable of the Network. For example, the RER Theme plans to propose 3 additional modules for CIHR's recently released multi-site ethics review approval process module. These modules will provide educational tools specific to reviewing protocols involving:
(1) Data-intensive research (V. Rahimzadeh, J. Kimmelman, BM Knoppers)
(2) Maternal/infant child health (V. Ravitsky)

(3) New immigrant populations (G. Bartlett).

 

Upcoming Network activities

The Network will be at The American Society of Human Genetics Annual Meeting, October 18th to 22nd, in Vancouver, British Columbia. More information coming!

Plans are underway for expert consensus workshops in all Network Theme areas. Details to follow.

 
 

The Precision Medicine Policy Network is supported and funded by
Genome Canada, Genome Alberta, and Genome Quebec.