Calvin Ho et al on Establishing the International Genetic Discrimination Observatory (Nature Genetics)

The first article of the Universal Declaration on the Human Genome and Human Rights states: “The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity.” The Declaration further states, in article 6: “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.” However, more than 20 years after the adoption of this Declaration, genetic discrimination remains one of the most pervasive concerns identified by the public, patients, scientists, clinicians and research participants worldwide. This discrimination hampers genomic research, precision medicine and the implementation of these technologies for the benefit of people globally. Discrimination has been defined differently in diverse contexts, such as in law or private insurance, thus potentially explaining why individuals may have different perceptions, expectations and acceptance thresholds concerning this issue. The plain meaning of genetic discrimination usually refers to treating an individual or a group unjustly or prejudicially on the basis of their genetic characteristics. The extent and incidence rate of genetic discrimination remain subjects of debate, partly because of the difficulty in rigorously assessing these aspects. Calvin Ho teams up with colleagues on an initiative to establish an international genetic discrimination observatory.  Their article is published as "Establishing the International Genetic Discrimination Observatory" (2020) 52 Nature Genetics 466-468 and the introduction is excerpted below:

Introduction: In 1997, representatives of 77 national delegations in attendance at the United Nations Educational, Scientific and Cultural Organization’s 29th session unanimously adopted the Universal Declaration on the Human Genome and Human Rights. The first article of this fundamental human rights text is probably the best known, stating: “The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity.” The Declaration further states, in article 6: “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.” However, more than 20 years after the adoption of this Declaration, genetic discrimination remains one of the most pervasive concerns identified by the public, patients, scientists, clinicians and research participants worldwide. This discrimination hampers genomic research, precision medicine and the implementation of these technologies for the benefit of people globally...