User:Katcch/sandbox

Draft Page -> not for review

Summary
The Genetic Discrimination Observatory (GDO) is a Montreal-based international network of researchers and other stakeholders who support the research and prevention of genetic discrimination—discrimination based on genetics or other predictive health information. Their headquarters are currently located at the Centre of Genomics and Policy at McGill University in Montreal, while the GDO International Expert Panel includes interdisciplinary experts from 25 jurisdictions worldwide.

Its vision is to create an inclusive, highly collaborative, international network of experts to address the multifaceted challenge raised by genetic discrimination from a holistic and human rights grounded perspective.

The GDO’s objectives are to :


 * To carry out high quality collaborative scientific research to document key aspects of genetic discrimination;
 * To collectively develop the policy and tools required to prevent genetic discrimination worldwide effectively;
 * To make a sustained effort to engage all publics affected by genetic discrimination and share our findings following open science principles.

The GDO’s values are:
 * Members of the GDO uphold the human rights values expressed by the UNESCO International Bioethics Committee as stated in the Universal Declaration on the Human Genome and Human Rights adopted unanimously and by acclamation at UNESCO's 29th General Conference on November 11, 1997 ;
 * Members of the GDO will also exemplify values of inclusion, equity and diversity

Organizational Structure
The GDO consists of the Director, International Consultative Committee, an International Expert Panel, and a Coordinator. The GDO International Expert Panel comes from various fields such as genetics, ethics, law, sociology, and public policy, and represents the primary scientific and governance body of the GDO. The International Consultative Committee advises the IEP about research challenges and opportunities relevant to GDO and makes recommendations for the sustainability and good integrity of GDO’s operations.

Funding
The GDO has received funding from Genome Canada (Génome Québec in French), the Fonds de recherche du Québec – Santé, and the Network of Applied Medical Genetics (RMGA).

A Quebec Forum on Genetic Discrimination
In 2018, the GDO initiated its first project, the "Forum québécois sur la discrimination génétique" (Quebec forum on genetic discrimination) in Quebec. The study aimed to, through a qualitative methodology, to explore and collect the opinions, experiences, and knowledge of Quebecers regarding genetic discrimination.

“Identifying Elements of an Optimal Genetic Non-Discrimination Policy: A Delphi Study”.
In 2021, the GDO initiated a Delphi study, “Identifying Elements of an Optimal Genetic Non-Discrimination Policy: A Delphi Study”. The project aims to provide policymakers with empirical data on the type of policies that may be more successful at addressing genetic discrimination, and is funded by Can-Share Connect (Canadian Institutes of Health Research (CIHR) and GenomeQuébec).

World Views
The GDO provides information about different countries and areas using interactive world views that show studies related to genetic discrimination and other categories in a live map format on the GDO's website. Three different maps are currently available, which cover twenty different jurisdictions :


 * 1) Policy approaches: existing policy approaches to address genetic discrimination around the world
 * 2) Life insurance: empirical studies on the incidence of genetic discrimination in life insurance worldwide
 * 3) U.S laws: U.S. State Laws against genetic discrimination

Share Your Story
The GDO provides individuals from Canada, the United States, Mexico, and the United Kingdom the opportunity to report specific cases of genetic discrimination or health-based discrimination confidentially. The information obtained in “share your story” will be expanded more rigorously through harmonized multinational surveys and triangulated with qualitative studies that will use targeted questions designed to mitigate self-reporting bias.

Regulatory and Ethics Working Stream
The GDO is collaborating with the Regulatory and Ethics Working Stream (REWS) from the GA4GH (Global Alliance for Genomics and Health). The primary role of REWS is to promote forward-looking data governance through the Framework for Responsible Sharing of Genomic and Health-Related Data. The collaboration is intended to provide tools for the broader community of those involved in genetics, from individuals whose genomic and health-related data is shared to those in research, healthcare and commercial organizations.

Publications

 * Joly, Y., Dalpé, G., Dupras, C. et al. Establishing the International Genetic Discrimination Observatory. Nat Genet 52, 466–468 (2020).
 * Joly, Y., Huerne, K., Arych, M., et al. (2021). The Genetic Discrimination Observatory: Confronting novel issues in genetic discrimination. Trends in Genetics, 37(11), 951–954.