"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
"Employers have begun to offer voluntary workplace genomic testing (wGT) as part of employee wellness benefit programs, but few empirical studies have examined the ethical, legal, and social implications (ELSI) of wGT. "... Read more
"Studies in the sociology of genetics have shown how living with a predisposition to a genetic disorder often comes with significant psycho-social burdens and struggles. One of these struggles is the fear of genetic discrimination. Despite genetic non-discrimination regulations, research shows people still worry about being subjected to genetic discrimination."... Read more
"Medical knowledge is a powerful instrument that is meant for individual and collective good. Since the time of Hippocrates, we have known it should never be abused, even if serious misuses have occurred in modern history. Among the most recent examples of harm is the compulsory collection of DNA samples from ordinary people being carried out by the Chinese authorities in Xinjiang province as part of a programme of surveillance and control "... 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.