The examples and perspective in this article deal primarily with the United States and do not represent a
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Genetic discrimination occurs when people treat others (or are treated) differently because they have or are perceived to have a
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
Genetic discrimination is illegal in the U.S. after passage of the
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.
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 was first offered in 1997 by
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.
On May 4, 2017, Bill S-201, the Genetic Non-Discrimination Act, received Royal Assent and became law in Canada. Despite government opposition in the House of Commons, it survived the lower house by the support of backbench Liberals and the totality of the
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 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.