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.

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]

Legal status

United States

Genetic discrimination is illegal in the U.S. after passage of the Genetic Information Nondiscrimination Act (GINA) on May 21, 2008.[4] 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.[5] The legislation bars employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions.[6] GINA also protects individuals from genetic discrimination in healthcare,[7] however, GINA itself does not define what genetic information is, leaving it up for debate.[8] Prior to the 2008 GINA Act, individuals could be denied insurance, either partially or fully, based on genetic tests they had received.[9]

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.[10]

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.[11] 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.[12]

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.[13] 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.[14] 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.[8] 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.[13]

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.[15] 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.[16]

Canada

On May 4, 2017, Bill S-201, the Genetic Non-Discrimination Act, received Royal Assent and became law in Canada.[17] 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.[17] 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.[18] 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.[19]