Genetic/Genomic Discrimination
Genomic or genetic discrimination occurs when people are treated differently because they have a mutation(s) that causes or increases the risk of an inherited disorder.
Discrimination based on genetic makeup is prohibited in many international agreements, declarations and recommendations. For example, the Council of Europe’s Convention on Human Rights and Biomedicine Article 11 states “Any form of discrimination against a person on grounds of his or her genetic heritage is prohibited.”
Such discrimination could arise in relation to a range of situations but the most commonly reported are insurance and employment. Fear of such discrimination can be a concern for people contemplating genetic/genomic testing.
The Council of Europe Recommendation No. R(92)3 of the Committee of Ministers to Member States on Genetic Testing and Screening for Health Care Purposes (February 1992) included 13 principles and number 7 stated “Insurers should not have the right to require genetic testing or to enquire about results of previously performed tests, as a pre-condition for the conclusion or modification of an insurance contract.”
RESOURCES ON Insurance discrimination
Joly Y, Dalpé G, Dupras C, Bévière-Boyer B, de Paor A, Dove ES, et al. Establishing the International Genetic Discrimination Observatory. Nature Genetics. 2020. https://doi.org/10.1038/s41588-020-0606-5
Rothstein MA. Time to End the Use of Genetic Test Results in Life Insurance Underwriting. Journal of Law, Medicine and Ethics. 2018;46(3).
Joly Y, Feze IN, Song L, Knoppers BM. Comparative Approaches to Genetic Discrimination: Chasing Shadows? Trends in Genetics. 2017;33(5):299-302.
Otlowski M, Taylor S, Bombard Y. Genetic Discrimination: International Perspectives. Annual Review of Genomics and Human Genetics. 2012;13(1):433-54.
Country Perspectives
Australia
In Australia, genetic information can impact premiums or eligibility for life insurance and related policies (such as critical illness and income protection cover) but not health insurance.
The Financial Services Council (FSC) is responsible for a national, self-regulatory regime for life insurance that consists of commitments in a Life Insurance Code of Practice (Code) and a series of Standards such as a Moratorium on Genetic Tests in Life Insurance (Standard No. 11) and Family Medical History (Standard No. 16). The Code and standards are mandatory for FSC members.
In June 2019, the FSC updated Standard No. 11 to implement a Moratorium on genetic tests in life insurance. The Moratorium covers an applicant for individually underwritten life insurance (including individually underwritten life insurance in group insurance) with an FSC member. The Moratorium started for applications received on or after 1 July 2019 and applies until 30 June 2024.
Under the terms of the Moratorium, Life Insurance Providers may only ask for or use the results of a genetic test if the total amounts of cover the applicant would have is more than any of the following:
$500,000 of lump sum death cover
$500,000 of total permanent disability cover (TPD)
$200,000 of trauma and/or critical illness cover
$4,000 a month in total of any combination of income protection, salary continuance or business expenses cover
Other key features of the Moratorium are:
allowing people to choose to disclose a favourable genetic test result
life insurers must take into account evidence based preventative treatment, or adherence to evidence based preventative measures, which reduce the possibility of developing an illness that runs in their family
a review in 2022 to consider its objectives and the impact on policyholders and the industry
The FSC also has a fact sheet which explains the terms of the current Moratorium.
United States
In the US in 2008, the Genetic Information Nondiscrimination Act (GINA) was passed into law, prohibiting discrimination by employers and health insurers. There are also other legal protections against genetic discrimination by employers, health insurers, and others.
Information about GINA and the other laws plus details of the legislative history of GINA and recent challenges are available from the NIH National Human Genome Research Institute Genetic Discrimination overview.
Canada
In May 2017, the Federal Genetic Non-Discrimination Act (Bill S-201) received Royal Assent in Canada. Canadian law now prohibits any person from requiring an individual to undergo a genetic test as a condition of providing goods or services or entering into a contract. It also prohibits any person from requiring the disclosure of existing genetic test results as a condition of engaging in those activities. In addition, the Act provides that employees of federally regulated businesses can refuse to undergo a genetic test or to disclose the results of a genetic test.
A policy statement on the collection, use and disclosure of genetic test results is available on the Office of the Privacy Commissioner of Canada website.
United Kingdom
In the UK there is a policy agreement between the government and the Association of British Insurers (ABI) on the use of genetic test results in insurance underwriting practices. The Concordat and Moratorium on Genetics and Insurance was first published in 2012 and was updated in 2014 and is currently in force until 2019.
Under the agreement the results of whole-genome sequencing carried out in major research projects, like the 100,000 Genomes Project run by Genomics England, do not need to be disclosed to insurers because they are part of a research project. As before, the only test that people are currently required to disclose under the agreement is for Huntington’s disease for life insurance where the insured sum is over £500,000.
The Concordat and Moratorium on Genetics and Insurance: 2014 is available on the UK Government website.
ISRAEL
The Genetic Information Law 5761-2000 was passed in Israel in 2000. The purpose of the law is described in its introduction as "... to regulate the conducting of genetic testing and the provision of genetic counseling, and to protect the right to privacy of the person subject to such testing in respect of identified genetic information, but without derogating from the quality of the medical treatment, medical and genetic research, the advancement of medicine and the protection of public welfare." The law also forbids discrimination at work or for insurance on the basis of genetic tests.
