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Researchers Establish Genetic Discrimination Observatory

NEW YORK – An international group of researchers has formed an initiative called the Genetic Discrimination Observatory (GDO) with the goal of studying the issue of genetic discrimination and finding ways to stop it.

As the researchers noted in a commentary in Nature Genetics on Monday, representatives of 77 national delegations met at the United Nations Educational, Scientific, and Cultural Organization's 29th session in 1997 to unanimously adopt the Universal Declaration on the Human Genome and Human Rights, which states in part, "No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms, and human dignity."

Despite that declaration, however, genetic discrimination remains a significant challenge for patients, scientists, clinicians, and research participants around the world.

"The extent and incidence rate of genetic discrimination remain subjects of debate, partly because of the difficulty in rigorously assessing these aspects," the researchers wrote. "Cases of genetic discrimination documented in the literature typically focus on the use of test results relating to highly penetrant, severe monogenic diseases in the context of insurance and employment. These cases are likely to represent only the tip of the iceberg, now that both genetic information and non-genetic biomarkers (for example, epigenetic clocks) can be used to predict life expectancy with increasing accuracy; that DNA phenotyping models and DNA-methylation panels are considered to be biometric tools in immigration and law enforcement; and that the prospect of human germline gene editing is becoming a reality."

Given these challenges — and the imperative to continue society's progress in preventive medicine and genomic research — there is, therefore, an urgent need to document and address genetic discrimination. The researchers suggested that legal efforts to address genetic discrimination should begin at the national or regional level with the implementation of forward-looking, flexible policies promoted by widely accessible information campaigns. Further, they added, as these issues continue to move beyond national borders, debate and research on novel solutions at the national and international levels is also important.

These reflections were the basis for the formation of the GDO, a network of researchers and other stakeholders dedicated to researching and preventing genetic discrimination worldwide.

"It is forward looking, with a broad purview that includes discrimination based not only on genetic information but also on other emerging forms of predictive health data," the authors wrote. "Its broad approach to genetic discrimination is framed by recognized human rights principles including respect for autonomy, dignity, privacy, the right to science, and the right to know or not know about genetic results."

The organization is planning to hold forums, take surveys, and run workshops and other networking activities with various stakeholders, as well as hold in-person and online events, including scientific meetings, conference panels, and online collaborative project platforms in which participants can collaboratively shape a more inclusive vision of society in which social status, relationships, acquisition of important socioeconomic goods, and other meaningful opportunities are not conditional on one's genetic profile.

The GDO online platform will produce information, tools, and policy models to help assess and prevent genetic discrimination. For example, the platform already provides a real-time genetic-discrimination map, which shows existing policy approaches to address genetic discrimination worldwide, studies on the incidence of genetic discrimination in life insurance worldwide, and US state laws against genetic discrimination.

All information on the platform will be validated by an international panel representing Australia, Belgium, Canada, China (including Hong Kong), Denmark, France, Germany, India, Ireland, Japan, Mexico, South Korea, Singapore, Spain, Sweden, Taiwan, the UK, and the US. Members of the international expert group will report on emerging changes in their regions and periodically review all the information that the GDO has on their respective countries to ensure that the maps continue to be up to date.

To engage the public, the group has developed a special feature called "report a case," which allows individuals who believe that they have been discriminated against to report their experience so that it can be confidentially used to better document the incidence of genetic discrimination in various countries and contexts.

Importantly, the group said, the GDO could eventually issue public statements and policy guidance on specific matters pertaining to genetic discrimination. Through these tools and features, the organization will enable researchers with a broad range of expertise in fields such as genetics, ethics, law, sociology, and public policies worldwide to work collaboratively with stakeholders to monitor and address developments in genetic discrimination.

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