That’s a wrap on the GDO’s 6th Annual Conference, hosted by Prof. Yann Joly and Dr. Lingqiao Song at the Centre of Genomics and Policy!
We were honoured to welcome Prof. Mark Rothstein (Institute for Clinical and Translational Science, UC Irvine) as our keynote speaker, who gave an enriching presentation on the “Past, Present, and Future of Genetic Non-discrimination Ethics and Law”.
Over the two days, collaborators from India, Ukraine, Lebanon, China, Australia, Japan, the US, the Netherlands, Ireland, and Singapore shared new empirical findings, emerging policy challenges, and cross-jurisdictional perspectives on genetic discrimination, AI governance, and their impacts. This breadth of perspectives made for a truly rich and engaging discussion.
We concluded by outlining our priorities for 2026 and discussing an action plan for continued collaborative work within the GDO network. Importantly, this was also the first GDO annual meeting to be open to an academic audience. With collaborators in over 30 countries worldwide and over 105,000 visits to our website in 2025, it was time to begin sharing our important work on genetic discrimination research more broadly with the community.
Thank you to everyone who attended!
We look forward to advancing this collaborative work on genetic discrimination in the year ahead.
We are thrilled to share that the GDO’s 6th Annual Conference will be held virtually on December 10 and 11, 2025!
This year, we will explore a range of topics related to Genetic Discrimination. If you are interested in presenting, please reach out to the GDO team.
Australia takes a historic step with the Treasury Laws Amendment Bill 2025, banning insurers from using genetic test results. This landmark reform ensures genetic privacy and fair access to life insurance for all Australians. Read the draft here.
The Genetic Discrimination Observatory (GDO) is proud to celebrate Professor Ine Van Hoyweghen, who has received the prestigious 2025 Francqui-Collen Prize, one of Belgium’s highest scientific distinctions.
In a recent GDO video, Dr. Diya Uberoi and Abby Rud explored what genetic discrimination is, where it occurs, and its real-world impact. They highlighted Canada's legal protections, including the GNDA and CHRA, and offered key recommendations to address existing gaps and reduce the public's fear around genetic data use. Watch the video here.
Sociogenomic research, especially studies using poligenic scores for traits like same-sex behavior, raises important ethical concerns about potential group harms that are often overlooked by researchers. View the publication here.
Fear of genetic discrimination could prevent individuals from accessing risk-based screening, despite its potential for early breast cancer detection. Nearly half of participants in this study worry their risk score could impact insurance access. Legal protections for models like BOADICEA remain unclear, highlighting the need for greater clarity. Read more here.
There are growing calls for the Australian Government to ban genetic discrimination in life insurance. Health groups and industry leaders highlight concerns that delays by the government may impact Australians seeking genetic testing for early detection and prevention. Read more about it here.
Despite Canada's Genetic Non-Discrimination Act (2017), fears of genetic discrimination constinue to exclude children with rare cancers from studies. Our project will explore human rights protections and engage researchers and parents to adress these concerns. Learn about it here.
The Australian Government recently announced that life insurers in Australia will be banned from using genetic tests to refuse coverage—a significant step forward in protecting Australians, who have been avoiding life-saving tests due to insurance concerns. Read more about it, and GDO Member Jane Tiller’s contributions, here!
To address the evolving concerns around GD, the GDO proposed a new and more encompassing definition of Genetic Discrimination. Read about its development here.
In this GDO collaborative research project published by JAMA Network Open, expert opinions were gathered to identify more effective policy approaches to address GD.