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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." Genetic Discrimination is considered to have its foundations in genetic determinism and genetic essentialism, and is based on the concept of genism, i.e. distinctive human characteristics and capacities are determined by genes.
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. 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. The idea of genetic discrimination has been combated since the 1947 Nuremberg Code that was created shortly after WWII, during which thousands of racialized victims died in tests conducted in Germany. Many countries are still developing policies to combat genetic discrimination in science, law, and everyday life.
Genetic discrimination is illegal in the U.S. after passage of the Genetic Information Nondiscrimination Act (GINA) on May 21, 2008. It was signed into law by President George W. Bush, and passed in the US Senate by a vote of 49–0 and in the House of Representatives by 414–1. The legislation bars employers from using individuals' genetic information when making hiring, firing, job placement, or promotion decisions. GINA also protects individuals from genetic discrimination in healthcare; however, GINA itself does not define what genetic information is, leaving it up for debate. Prior to the 2008 GINA Act, individuals could be denied insurance, either partially or fully, based on genetic tests they had received.
Although it was passed in 2008 there were 201 cases that cited GINA in 2010 and 333 in 2014. It wasn't until 2013 that a company actually faced penalties under GINA.
Health insurance discrimination
In 2008, The New York Times reported that some individuals avoid genetic testing out of fear that it will would impede their ability to purchase insurance or find a job. They also reported that evidence of actual discrimination was rare. In November 2016 insurance company GWG Life was found to be collecting saliva samples in order to offer lower rates to people who are epigenetically healthier than others of their age. While this is positive discrimination, this does suggest future potential classification of clients by genetic data.
While the 2008 GINA Act does protect against genetic discrimination pertaining to health insurance, it does not protect against genetic discrimination under other forms of insurance, such as life, disability or long-term care insurance. Therefore, patients are enjoying less protection against genetic discrimination in comparison with other peer countries, such as France, Switzerland, Australia and the United Kingdom. Additionally, 2008 GINA offers no protection for home/mortgage insurance or when an employer has 15 or less employees. Excluded from the Act are also parties who are covered under Veterans Health Administration or Indian Health Services. Because a variety of medical tests serve as proxies for genetic information, proponents of insurer access to genetic information argue that it does not require specific limiting legislation. However, this represents an important problem for recruiting participants to medical research according to other scholars stressing that protecting American against discrimination may only happen with the advent of a voluntary moratorium by the insurance industry.
Direct-to-consumer genetic testing
Direct-to-consumer genetic testing was first offered in 1997 by GeneTree, a now defunct family history website. These tests are easily accessible on the market and popularized by companies such as 23andMe and Ancestry.com. These genetic kits are expensive and disproportionately serve wealthy individuals. As a result, when the data collected from testing is sold to research companies, it represents a biased sample of the population. The Food and Drug Administration additionally halted all 23andMe marketing in 2013 over unsubstantiated claims 23andMe made regarding disease diagnosis and prevention. The firm was allowed to continue sales after it stopped providing health information to customers.
The shortage of knowledge about and awareness of direct-to-consumer genetic testing is one of the contributors to the limited purchasing of this kind of service. As technology has progressed, genetic testing has become a more wide scale practice, potentially affecting the privacy of consumers as a result.
The Genetic Non-Discrimination Act received Royal Assent and became law in Canada on May 4, 2017. Introduced as a private member's bill S-201 by Nova Scotia senator Jim Cowan, the bill was passed in the Senate and, despite opposition from the Liberal government's Cabinet in the House of Commons, it was also passed in the lower house with the support of backbench Liberals and the totality of the Conservative, New Democratic and Green Party caucuses. The Genetic Non-Discrimination Act introduced amendments to the Canadian Human Rights Act and Canada Labour Code, and introduced national penalties for entities requiring an individual to undergo genetic testing as a condition for the provision of goods or services, or as a condition for entering or continuing a contract. The Act also forbids anyone from refusing to enter into a goods or services agreement with another person on the grounds that that person has refused to disclose the results of an already completed genetic test. Violations are punishable by fines of up CA$1 million and/or imprisonment of up to five years. Accordingly, one effect of this legislation will be to prohibit insurance providers from demanding that a prospective client undergo a genetic test—or to disclose an existing test—as a prerequisite to the provision of insurance coverage.
The Genetic Non-Discrimination Act was opposed by the insurance industry and, upon its passage, then-attorney general Jody Wilson-Raybould stated she believed the law may be unconstitutional. The Supreme Court of Canada upheld the law's constitutionality in a 5–4 split ruling on July 10, 2020.
The Equality Act of 2010 prohibits the use of genetic information for employment decisions such as hiring and promotions. While no formal law exists banning the use of genetic information for insurance policy decisions, the Government of the United Kingdom and the Association of British Insurers voluntarily entered a moratorium from 2014 to 2019 to refrain from using genetic information with regards to insurance.
Malawi is the only country in Africa that has emplaced any laws regarding genetic discrimination. Malawi's National Health Sciences Research Committee adopted the policy requirements of the Science and Technology Act No.16 of 2003.
In Australia, genetic information is less likely to influence health insurance coverage decisions as health insurance is "community rated", meaning that all individuals pay the same amount regardless of their history or genetic makeup. Since 2008, the amount of insurance applications with attached genetic test results has increased by 90%. Although the community rating allows for a more even distribution of risk and cost to consumers, life insurance companies are legally allowed to “underwrite” when evaluating the genetic risks of applicants; essentially, those with higher risk could potentially be charged higher premiums. Life insurance companies can require individuals to report genetic testing results if they have already been tested, but cannot force individuals to take genetic tests. These companies are able to require individuals to disclose genetic testing results from research and direct-to-consumer tests.
Genetic discrimination is a rising issue in Argentina. Health plans discriminate against those who have disabilities or who have genetic conditions. In the past decade, however, National Law 26689 was passed providing patients with the right to not experience discrimination as a result of genetic conditions.
Genetic testing in the workplace
Some people have genes that make them more susceptible to developing a disease as a result of an occupational exposure. For example, workers with beryllium sensitivity and chronic beryllium disease are more likely to carry the gene HLA-DPB1 than workers without these conditions. By offering optional genetic testing to workers and allowing only the workers to see their own results, employers could protect genetically susceptible individuals from certain occupational diseases. A beryllium manufacturing company initiated a pilot program to test prospective workers for the HLA-DPB1 gene at a university-based laboratory. The company paid for the testing and counseling but received results that did not identify which workers had the gene.
In 1991, the American Medical Association Council on Ethical and Judicial Affairs suggested that the following five conditions must be satisfied in order for genetic screening by an employer to be appropriate:
- The disease must develop so rapidly that monitoring would be ineffective in preventing it.
- The genetic test is highly accurate.
- The genetic variation results in an unusually elevated susceptibility to occupational illness.
- Undue expense is needed to protect susceptible workers by lowering the level of the toxic substance in the workplace.
- The worker must provide informed consent prior to being tested.
Several occupational health screening measures similar to genetic testing are already taking place. For example, in 1978, DuPont reported testing African American applicants for sickle cell trait and restricted these workers from exposure to nitro and amino compounds. However, research indicates that workers or applicants would not take advantage of genetic testing due to fear of discrimination. A 1995 poll of the general public found that over 85% are concerned about access to use of genetic information by insurers and employers. Likewise, in the case of the beryllium manufacturer described above, so few workers participated in the genetic testing that the company decided instead to pursue an "enhanced preventive model of workplace controls."
Race and genetics
State governments in the United States have attempted to combat racial discrimination by barring instances of discrimination by insurers that involve linking specific genetic conditions to race, such as the sickle cell trait in African Americans.
While there exists statistical evidence of genetic differences between human populations—such as mutations within the Duffy blood group—research done by geneticist Guido Barujani, looking at 109 genetic markers across 16 populations, "does not suggest that the racial subdivision of our species reflects any major discontinuity in our genome".
According to Jonathan Roberts and his colleagues, the media evokes irrational fear among the public about advances in genetic techniques. In a recent study, participants who were prompted to convey their attitudes about unfamiliar scientific concepts relating to genetics ultimately drew conclusions based on examples from popular culture.
Genoism is a neologism coined by Andrew Niccol, director and writer of the 1997 film Gattaca, used to describe unethical and illegal genetic discrimination. Predictions of physical and mental performance are computed via genetics from DNA collected from hair, fingernails, skin flakes, spit swabs, eyelashes, etc. Upon birth, a number of genetically-induced characteristics are calculated: physical and intellectual capacity, life expectancy, probable successful diseases, and likely causes of death, all determined via blood samples and genetic testing. Job interviews, health insurance purchasing, and even potential dates can be sized up according to the perceived quality of the person's DNA due to advancements in genome sequencing. This put an ironic twist to Darwin's sexual selection for good genes. According to the movie, "We now have discrimination down to a science."
My father was right. It didn't matter how much I lied on my resume. My real resume was in my cells. Why should anybody invest all that money to train me when there were a thousand other applicants with a far cleaner profile? Of course, it's illegal to discriminate, 'genoism' it's called. But no one takes the law seriously. If you refuse to disclose, they can always take a sample from a door handle or a handshake, even the saliva on your application form. If in doubt, a legal drug test can just as easily become an illegal peek at your future in the company.
- Gattaca, the most notable film about genetic discrimination
- Genetic privacy
- Human Genome Project
- Health Insurance Portability and Accountability Act
- Genetic Information Nondiscrimination Act
- Genetic Discrimination Observatory
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