Genetic discrimination

Genetic discrimination occurs when people treat others (or are treated) differently because they have or are perceived to have a gene mutation(s) that causes or increases the risk of an inherited disorder. It may also refer to any and all discrimination based on the genotype of a person rather than their individual merits, including that related to race. Some legal scholars have argued for a more precise and broader definition of genetic discrimination: "Genetic discrimination should be defined as when an individual is subjected to negative treatment, not as a result of the individual's physical manifestation of disease or disability, but solely because of the individual's genetic composition."[1] Genetic Discrimination is considered to have its foundations in genetic determinism and genetic essentialism,[2] and is based on the concept of genism, i.e. distinctive human characteristics and capacities are determined by genes.[3]

Genetic discrimination takes different forms depending on the country and the protections that have been taken to limit genetic discrimination, such as GINA in the United States that protects people from being barred from working or from receiving healthcare as a result of their genetic makeup.[4] The umbrella of genetic discrimination includes the notion of informed consent, which refers to an individual's right to make a decision about their participation in research with complete comprehension of the research study.[5]

Within the United States, genetic discrimination is an ever-evolving concept that remains prominent across different domains. Emerging technology such as direct-to-consumer genetic tests have allowed for broad genetic health information to be more accessible to the public, but raises concerns about privacy. In addition, the COVID-19 pandemic has exacerbated difficulties of those with genetic conditions as they have faced discrimination within the U.S. healthcare system.

The idea of genetic discrimination has been combated since the 1947 Nuremberg Code that was created shortly after WWII, during which thousands of racialized and disabled victims died in tests conducted in Germany.[5] Since then, new issues of racialized genetic discrimination have come to light involving sharing of genetic information to genomic biobanks and subsequent novel treatments. Many countries are still developing policies to combat genetic discrimination in science, law, and everyday life.[6]