Genetic Discrimination Observatory

Description

Genetic Discrimination

Fifteen years after the end of the project on the Human Genome, the medical benefits are now emerging. However, Canadians have concerns about the possibility that their genetic information is used in a way that violates human rights and ethics. These fears undermine participation in research with biobanks as well as the conduct of genetic tests recommended by a physician. To cope with genetic discrimination, the Law to Ban and Prevent Genetic Discrimination, S-201, was adopted in 2017. This law has benefited from the support of patients, geneticists and politicians. The legitimacy of S-201 is, however, questioned by the Quebec government and its application remains limited. Although S-201 is an important first step, it does not solve all the challenges posed by genetic discrimination. The goal of the GDO is to create a single communication platform to collectively improve the prevention of genetic discrimination.

The GDO will serve as a comprehensive online resource that offers an informative and collaborative platform providing access to the information and tools needed to effectively counter genetic discrimination. Specific aspects of the GDO will include a secure management system, integrated registration for participants and a database of projects, new developments, and events. Our overall approach will be guided by four fundamental principles:

  • Consultations with all key stakeholders to determine the tools, aspects and content to be prioritized in the inclusion on the platform;
  • Content reviewed for relevance and quality by research assistants prior to inclusion on the site;
  • A summary of the scientific material included in the GDO; and
  • Transparency in the governance of the GDO to avoid conflicts of interest.