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] 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.[5] Many countries are still developing policies to combat genetic discrimination in science, law, and everyday life.[6]

Legal status

United States

On May 21st, 2008, George W. Bush signed the Genetic Information Nondiscrimination Act, protecting individuals from genetic discrimination in health insurance and employment.[7]

Genetic discrimination is illegal in the U.S. after passage of the Genetic Information Nondiscrimination Act (GINA) on May 21, 2008.[8] 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.[9] The legislation bars employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions.[4] GINA also protects individuals from genetic discrimination in healthcare,[10] however, GINA itself does not define what genetic information is, leaving it up for debate.[11] Prior to the 2008 GINA Act, individuals could be denied insurance, either partially or fully, based on genetic tests they had received.[12]

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.[13]

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.[14] 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.[15]

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.[16] 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.[17] 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.[11] 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.[16]

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.[18] 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.[19]

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.[20] As technology has progressed, genetic testing has become a more wide scale practice, potentially affecting the privacy of consumers as a result.[21]

Canada

On May 4, 2017, Bill S-201, the Genetic Non-Discrimination Act, received Royal Assent and became law in Canada.[22] Despite government opposition in the House of Commons, it survived the lower house by the support of backbench Liberals and the totality of the Conservative, NDP and Green Party MPs. The Genetic Non-Discrimination Act makes it a crime for anyone to require 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.[22] 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. One who contravenes these prohibitions is liable to being fined (up to $1 million) and/or imprisoned (up to 5 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.

United Kingdom

The Equality Act of 2010 prohibits the use of genetic information for employment decisions such as hiring and promotions.[23] 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.[24]

Africa

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.[25]

Australia

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.[26] Since 2008, the amount of insurance applications with attached genetic test results has increased by 90%.[27] 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.[27] 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.[28] These companies are able to require individuals to disclose genetic testing results from research and direct-to-consumer tests.[28]

Argentina

Genetic discrimination is a rising issue in Argentina.[29] Health plans discriminate against those who have disabilities or who have genetic conditions.[30] 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.[30]