By Shawn H.E. Harmon
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]
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).