Legal and Socio-ethical Issues

Strategic theme directors :

Bartha Maria Knoppers, MA, LLB, BCL, DLS, Ph.D., McGill University
Yann Joly Yann Joly, Ph.D. (DCL) Ad.E., McGill University

Consideration and research on the ethical, social and legal issues involved in research projects is important to ensure that scientific research respects the common values of society while at the same time allowing Québec to pursue its scientific leadership. The RMGA has played a prominent role in this respect for many years, either through the development of Statements of Guiding Principles or its role as an adviser when social issues arise (e.g. is it necessary to adopt a law prohibiting genetic discrimination?).

The objective of this Strategic Theme is to improve awareness on the socio-ethical and legal issues of genomic research, to support RMGA researchers in their projects and to develop practical and concrete tools.

Researcher SupportTo support researchers in their projects, in particular for the preparation of documents necessary for the ethical evaluation of their projects, during the participants' consent process or for the development of policies for management or access to databases.Bartha Maria KnoppersYann Joly
Tool Development

Provide practical and concrete tools on ethical and legal issues raised by genomics research. For example, since 1995, the RMGA has published six Statements of Principles on emerging ethical and legal issues in genetic and genomic research*. Recently, the RMGA updated and consolidated these Statements of Principles into one document:

Consolidated Statement of Principles from the Quebec Network of Applied Genetic Medicine (RMGA) – 2016

The RMGA also develops positions on certain issues raised by research and genetics and medical genomics in Quebec. For example:

RMGA position paper on genetic discrimination (2016)

* Please note that the former Statements of Principles remain available for consultation purposes:

Statement of Principles: Human Genome Research (2000)

Statement of Principles on the Ethical Conduct of Human Genetic Research Involving Populations (2003)

Statement of Principles for Genetic Research Involving Children (2007)

Statement of Principles on the Secondary Use of Data and Biological Material Collected in the Context of Health Care or Research (2010, English version not available)

RMGA Statement of Principles on the Return of Research Results and Incidental Findings (2013). A Summary Statement is also available.

Bartha Maria KnoppersYann Joly