Many people are concerned about the use of genetic information by life insurers. Researchers from Monash University are keen to understand the views and experiences of Australian consumers. These include people who have had genetic testing as well as people who are eligible but choose not to have ge... Read more
In 2019, the Australian life insurance industry introduced a partial moratorium (ban) limiting the use of genetic test results in life insurance underwriting. The moratorium is industry self-regulated and applies only to policies below certain financial limits (eg, $500 000 of death cover).... Read more
Genetic discrimination (GD) is the differential or unfair profiling of an individual on the basis of genetic data. This article summarizes the actions of the Genetic Discrimination Observatory (GDO) in addressing GD and recent developments in GD since late 2020. ... Read more
Our article aims to provide a comprehensive portrayal of how seven Asian jurisdictions have sought to address the challenge of genetic discrimination (GD) by presenting an analysis of the relevant legislation, policies, and practices.... Read more
Genetic discrimination has been a public concern for decades but supported by limited evidence. Following a reference from the Quebec government, the Court of Appeal of Quebec ... Read more
Utah’s governor recently signed into law SB 227, creating the Genetic Information Privacy Act (GIPA). The law, which is anticipated to go into effect in May, is aimed at protecting genetic data collected from direct-to-consumer genetic testing companies. ... Read more
The Genetic Discrimination Observatory (GDO) is a unique network of researchers and other stakeholders dedicated to researching and preventing discrimination based on genomic and other omic data worldwide.
GDO Project Team
International Expert Panel
These FAQs have been developed by the research team to provide general information about genetic discrimination.
If you have been the victim of genetic discrimination and you want to share your story with the GDO.
With the help of our collaborators, the GDO provides several maps representing the state of genetic discrimination in real time around the world.
To accomplish its goal of serving as a comprehensive online resource to monitor and prevent genetic discrimination, the GDO provides access to the following resources: Tool Boxes, Policies and Publications.
Genetic discrimination involves treating differently and negatively or unfairly profiling an individual relative to the rest of the population on the basis of actual or presumed genetic characteristics.
Refer to our FAQs for a more extensive definition »
The Genetic Discrimination Observatory (GDO) is a unique network of researchers and other stakeholders dedicated to researching and preventing discrimination based on genomic and other omic data worldwide. The GDO serves as a comprehensive online resource that offers a collaborative platform providing access to information and tools needed to monitor and prevent genetic discrimination.
Specific aspects of the GDO include a secure management system; integrated registration for participants; and a database of projects, new developments, and events. Our overall approach is framed by recognized human rights principles including respect for autonomy, dignity, privacy, the right to science, and the right to know/right not to know.
1. Consultations with key stakeholders for tools, elements and content;
2. Content is reviewed for relevance and quality;
3. Lay summaries of all scientific materials made available for non-experts;
4. Governance structure and decision process are transparent and subject to ethical guidelines and oversight.