"Since the 1990s, insurance has been the primary field focused on the social disadvantages of using genetic test results because of the concerns related to adverse selection. Although life insurance is popular in Japan, Japan does not currently have any regulations on the use of genetic information and insurers have largely kept silent for decades."... Read more
"A study of Queensland health consumers has found most have relatively low levels of understanding and awareness of genetic testing, despite its significant potential to improve health outcomes. "... Read more
"California’s “Genetic Information Privacy Act” (SB 980), vetoed on September 25, 2020 by Governor Gavin Newsom, would have established obligations for direct-to-consumer (“DTC”) genetic testing companies and others that collect or process genetic information. "... Read more
"Along with the potential for breakthroughs in care and prevention, the search for genetic mechanisms underlying the spread and severity of coronavirus disease 2019 (COVID-19) introduces the risk of discrimination against those found to have markers for susceptibility. We propose new legal protections to mitigate gaps in protections under existing laws."... 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.