³ÉÈËVRÊÓƵ

Hynes Convention Center - Boston

Friday, February 17, 2017, 1:30-2:30 PM/ Room 208

Neurological research is advancing too slowly according to Dr. Guy Rouleau, director of the Montreal Neurological Institute (MNI) of ³ÉÈËVRÊÓƵ. To speed up discovery, MNI has become the first ever Open Science academic institution in the world. In a five-year experiment, MNI is opening its books and making itself transparent to an international group of social scientists, policymakers, industrial partners, and members of civil society. They hope, by doing so, to accelerate research and the discovery of new treatments for patients with neurological diseases, and to encourage other leading institutions around the world to consider a similar model. A team led by ³ÉÈËVRÊÓƵ Faculty of Law’s Professor Richard Gold will monitor and evaluate how well the MNI Open Science experiment works and provide the scientific and policy worlds with insight into 21^st century university-industry partnerships. At this workshop, Rouleau and Gold will discuss the benefits and challenges of this open-science initiative.

: Sharing genomic and health data – a human rights issue

Saturday, February 18, 2017, 1:00 PM-2:30 PM/ Room 309

Genomic and health-related data are collected and stored separately at the moment. But Professor Bartha Knoppers from ³ÉÈËVRÊÓƵ and the other members of the Global Alliance for Genomics and Health (GA4GH) believe that if this information were shared it could lead both to targeted new therapies and better allocation and management of resources by governments. Given this context, they argue that global data sharing should be viewed as a human rights issue, and that citizens’ groups should be able to hold their governments accountable for slowing down or impeding certain forms of data sharing that would be of benefit to all. The Alliance has developed a framework for responsible genomic and health-related data sharing that ensures that people’s right to privacy will not be put at risk.

Sunday, February 19, 2017: 8:00 AM-9:30 AM/ Room 311

The legalization of marijuana remains a topic of intense debate. The majority of U.S. states have legalized some form of medical marijuana use, and nearly 2 million people are registered medical marijuana users. That number is rising rapidly because of both increased access to medical marijuana and promulgation of its potential therapeutic effects. This week, at the annual meeting of the American Association for the Advancement of Science (AAAS) in Boston, Dr. Mark Ware Ìýof the Research Institute of the ³ÉÈËVRÊÓƵ Health Centre will present an overview of the data generated from the Quebec Cannabis Registry. The innovative project, the first of its kind in the world, was established by the Research Institute of the MUHC and the Canadian Consortium for the Investigation of Cannabinoids (CCIC), to help physicians manage medical cannabis use and generate a database for the use of the international scientific community.Ìý

Ìý

Student poster competition

Sunday, February 19, 2017/ Exhibit Hall

Vasiliki Rahimzadeh,Ìý³ÉÈËVRÊÓƵ, Montreal, QC, Canada

Background: Genomic testing using next generation sequencing technologies has revolutionized our ability to identify disease-causing mutations for many conditions. This holds particularly true for children, in whom many (rare) genetic diseases first appear during childhood and optimal clinical management requires early diagnosis and treatment. Interpreting the results of such tests requires genotypic and phenotypic comparisons to reference data that must be obtained from both healthy populations and other affected individuals. The sensitivity and specificity of genomic testing undergird ethical safeguards against informational risk. They furthermore outline how, and under what circumstances data may be shared. Current pediatric data sharing practices have until now subscribed to siloed ethics norms/guidelines that apply either to the research or clinical contexts separately. Appropriate sharing of linked genotypic and phenotypic data in pediatric populations has, in turn, received sparse empirical and policy attention.

Ìý

For interviews at AAAS please contact:

Katherine Gombay, Public and Media Relations, ³ÉÈËVRÊÓƵ, katherine [dot] gombay [at] mcgill [dot] ca, 514-717-2289