# Genetic Discrimination Observatory

The Genetic Discrimination Observatory (GDO) is a global network of researchers and stakeholders dedicated to studying and preventing genetic discrimination through research, public engagement, and policy development.

## Establishment and funding

Established in 2020 at McGill University, under the leadership of Professor Yann Joly at the Centre of Genomics & Policy, the GDO was initially funded by Genome Canada, Fonds de recherche du Québec – Santé, and the Network of Applied Medical Genetics. Today, the organization brings together more than 50 multidisciplinary experts from 30 jurisdictions dedicated to addressing genetic discrimination.

## Background

With increased incorporation of genomic technologies, genetic discrimination has become a multifaceted concern that can infringe upon human rights and hinder public trust in genetic services. Broadly defined, Genetic Discrimination occurs when an individual or group is unfairly treated, profiled, or harmed based on actual or presumed genetic characteristics relative to the rest of the population. If not adequately regulated, genetic discrimination can discourage individuals from accessing clinical genetic services or undergoing genetic testing due to concerns about the potential misuse of their genetic information. In today’s postgenomic era, where AI and other advances have made it easier for individuals to access and process personal information, it has become all the more crucial to address the phenomenon.

## Mission

With the aim to prevent genetic discrimination, the GDO seeks to develop multidisciplinary solutions that can be adopted by researchers, policymakers and other stakeholders globally. Over the years, the network has created a range of policy and educational tools to identify, prevent, and respond to instances of genetic discrimination. Some of these tools include:
An Online Tool that collects de-identified Personal Accounts of Genetic Discrimination to document:
* Real-life cases of genetic discrimination
* Personal experiences shared by affected individuals
* Insights into the impact of genetic discrimination
Live Maps used to monitor:
* Legal frameworks against genetic discrimination
* Empirical studies on genetic discrimination in life insurance
* U.S. state and federal regulations
* Number of DNA profiles collected by governments in G20 countries
Educational Resources designed to raise awareness and promote understanding, including:
* A Resource hub on the GDO website
* Educational videos
* Definitions and case studies

## Projects

Research is fundamental to raising awareness of genetic discrimination, informing policy development, and assessing its societal impact. Each year, the organization advances both collaborative initiatives and core member-led studies aimed at identifying, preventing, and addressing instances of genetic discrimination. Past projects have explored the definition of genetic discrimination and the characteristics of effective non-discrimination policies. A key part of this effort is the organization’s annual conference, which brings members together to share insights, discuss jurisdictional updates, and explore policy developments. Covering themes such as evolving definitions, regulatory challenges, and the intersection of genomics and human rights, the conference has informed the development of numerous collaborative and member-led-research initiatives.

##### Past Collaborative Projects

   Defining Genetic Discrimination
Published in Nature Genetics, this foundational project seeks to establish a clear and inclusive definition of genetic discrimination, to better account for its systemic and stigmatizing effects.
   The Key Features of a Genetic Nondiscrimination Policy
This project aimed to identify key elements of an effective genetic nondiscrimination policy and provide guidance to policymakers in addressing genetic discrimination and related public concerns.
More recently, the GDO has sought to explore the broad range of contexts that GD can occur. These include a current study on Human rights in pediatrics and use of pharmacogenomic information by insurers.

##### Current Collaborative Project

   The Use of Pharmacogenomic Information by Insurers
This project examines the adequacy of genetic discrimination laws in contexts beyond underwriting. By analyzing regulations in 20 jurisdictions, it identifies approaches that balance scientific progress with privacy and ethics.

##### Present Core Member-Led Project

   Leveraging Human Rights to Clarify the Risk of Genetic Discrimination in Pediatric Oncology
As a core GDO team project, this initiative examines fears and risks of genetic discrimination in pediatric oncology. Funded by the ACCESS Network and CIHR, the study explores the role human rights play in addressing concerns associated with genetic discrimination.

## Select publications

Examples of GDO publications include:
* The key features of a genetic nondiscrimination policy
* A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate
* Establishing the international genetic discrimination observatory
* The Genetic Discrimination Observatory: Confronting novel issues in genetic discrimination