The possibility of improving outcomes and cost-effectiveness by tailoring therapies to patients’ genetic profiles (stratified medicine) is a dream of researchers and healthcare programmes, although at present relatively few tests are viewed as reliable.[1]
Counterbalancing these positives, genetic information can also be used to discriminate against individuals; information about otherwise healthy people’s predisposition can affect how decisions are made in relation to a wide range of fields, including insurance (coverage, premiums, deductibles), employment (hiring, promotion, dismissal), banking (loans), education (funding, acceptance), sports (participation), and more, and has already affected people in relation to employment and insurance.[2]
Genetic testing involves the analysis of one’s chromosomes, genes, or gene products (proteins) to identify the presence of certain traits, thus allowing one to discover their parentage, ancestral origins, or predisposition to genetic disease, the latter of which can facilitate the adoption of helpful lifestyle practices and the initiation of appropriate treatment.
Of course, the very real potential for ‘bad behaviour’ (i.e., decisions based on illegitimate discrimination that violates fundamental rights) was very early anticipated. One of the first movers was UNESCO, who has long urged States to provide protection from discrimination based on genetic data or characteristics. Its Universal Declaration on the Human Genome and Human Rights (1997), for example, sought to protect the human genome from improper manipulation, and to prevent uses of genetic information that would be contrary to human dignity and human rights.[3] Additionally, the Council of Europe’s Convention on Human Rights and Biomedicine (1997), in Article 11, prohibits any form of discrimination against a person on grounds of his or her genetic heritage.[4]
A number of State governments have also acted. After a long gestation and many false starts,[5] the US adopted the Genetic Information Nondiscrimination Act of 2008, which prohibits employers, employment agencies and labour organisations from discriminating against individuals because of genetic information (s 202), and prohibits health insurers from requiring genetic testing (ss 101 and 201). However, it does not cover life insurance, disability insurance or long-term care insurance.[6] In Australia, limits have been imposed on contractual liberties in employment or insurance by adding general prohibitions to human rights legislation and creating specific legal rules for insurance providers and employers.[7] In Germany, privacy legislation has been enhanced to protect genetic data from being collected, used and disclosed without specific consent, and patients’ rights instruments have been drafted to give patients a greater say over their health information.[8]
And now Canada is also taking steps. Bill S-201, the proposed Genetic Non-Discrimination Act, received first reading on 8 December 2015, and second reading on 27 January 2016. It is now at the Committee Stage,[9] which is the word-by-word examination of a Bill by a committee of Parliamentarians, and it represents the MPs’ first, and maybe only, opportunity to amend the provisions of a Bill. Once the Committee has amended and adopted the Bill, it reports the amended Bill at third reading, where the House is asked to pass it. Section 3(1) of the proposed Act prohibits any person from requiring an individual to undergo a genetic test as a condition of (a) providing goods or services to that individual, (b) entering into or continuing a contract or agreement with that individual, or (c) offering or continuing specific terms or conditions in a contract or agreement with that individual. Section 3(2) prohibits any person from refusing to engage in an activity described above on the grounds that the individual has refused to undergo a genetic test. Section 4 prohibits any person from requiring an individual to disclose the results of a genetic test as a condition of engaging in the described activities, and s 5 prohibits any person who is engaged in such an activity to collect or use the results of a genetic test without the individual’s written consent. Section 6 makes exceptions for healthcare workers and researchers. Section 7 outlines fines and prison terms for summary and indictable offences. The proposed statute would also amend: the Canada Labour Code, to protect employees (s 8); the Canadian Human Rights Act, to prohibit discrimination on the ground of genetic characteristics (ss 9 and 10); and the Privacy Act and the Personal Information Protection and Electronic Documents Act, to expressly include information derived from genetic testing as personal information (ss 11-13).
While the Canadian law has not yet been adopted, there seems to be significant support for a clear and unambiguous approach to genetic discrimination, and for its prohibition. Such an approach, together with strong sanctions for breaches, appears to be widely viewed as salutary for both protecting patients and publics, and for encouraging participation in genetic research. Indeed, one of the reasons given for the adoption of the US legislation was to “ease concerns about discrimination that might keep some people from getting genetic tests that could benefit their health [and] enable people to take part in research studies without fear that their DNA information might be used against them in health insurance or the workplace”.[10]
So why has the UK not followed a similar path? In 2007, Westminster undertook a review of its anti-discrimination laws and declined to add any prohibitions against discrimination on the grounds of genetic characteristics.[11] Yes, insurers and employers are responsible for handling genetic information in accordance with the Data Protection Act 1998, and, yes, the insurance industry has reaffirmed its 2001 Concordat on the use of genetic testing in certain circumstances.[12] But, the gaps that this approach permits seem obvious; one must wonder whether the UK’s relatively informal or indirect stance on genetic discrimination provides sufficient protection in respect of both scope and consequence.
Your views are welcome.
Notes and References
[1] Although new tests are quickly being developed; over 24,000 tests for more than 5,000 conditions have been registered with American NIH: National Center for Biotechnology Information, GTR: Genetic Testing Registry (2014).
[2] PHG Foundation, ‘German Government Drafts Legislation to Allow Genetic Tests in Employment’, 25 October 2004; BioNews, ‘Genetic discrimination investigated in Australia’, 4 November 2005; J Hall, ‘Study finds genetic discrimination by insurance firms’, 9 June 2009, Toronto Star; S Reitz and D Malan, ‘Genetic Tests Spark New Type Of Litigation’, 3 May 2010, Connecticut Law Tribune; CBC, ‘Genetic Discrimination’, 12 February 2012, The National; Senate Standing Committee on Human Rights, Evidence Yvonne Bombard and Ronald Cohn, 2 October 2014, Hansard.
[3] See also the International Declaration on Human Genetic Data (2004), and UNESCO, Resolution 2004/09: Genetic Privacy and Non-Discrimination, which urges States to take appropriate measures to ensure that no one is subjected to discrimination based on genetic information.
[4] And its Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Genetic Testing for Health Purposes (2008) expands upon the Convention’s provisions relating to genetic testing.
[5] National Human Genome Research Institute, Genetic Discrimination, at https://www.genome.gov/10002077.
[6] National Human Genome Research Institute, Genetic Information Nondiscrimination Act of 2008: Fact Sheets, 9 January 2009.
[7] Australian National Health and Medical Research Council, Genetic Discrimination, NHMRC Ref. no. G1, November 2013.
[8] European Commission, Genetic Testing: Patient’s rights, insurance and employment, A survey of regulations in the European Union (2002).
[9] See Parliament of Canada, Parliamentary Business, Senate of Canada, Bill S-201, at http://www.parl.gc.ca/HousePublications/Publication.aspx?Language=E&Mode=1&DocId=8063161.
[10] National Human Genome Research Institute, Genetic Information Nondiscrimination Act of 2008, at http://www.genome.gov/10002328. A position favourably noticed in Parliament of Canada, Genetic Discrimination and Canadian Law (2014), at http://www.lop.parl.gc.ca/content/lop/ResearchPublications/2014-90-e.html#ftn90.
[11] UK Department of Communities and Local Government, Discrimination Law Review – A Framework for Fairness: Proposals for a Single Equality Bill for Great Britain: A Consultation Paper (2007)
[12] Association of British Insurers, ‘Insurance Genetics Moratorium extended to 2017’, 5 April 2011, News Release. The basic terms of the Concordat and Moratorium on Genetics and Insurance (2011) are that customers will not be asked or pressured to undergo predictive genetic tests in order to obtain insurance, nor will they be asked to disclose any predictive or diagnostic test results acquired as part of clinical research or after the policy has started, whether their own test or that of another person (i.e., a blood relative).
