Genetic discrimination in life insurance: a human rights issue

Abstract

In this issue of Journal of Medical Ethics, Pugh offers a pluralist justicebased argument in support of the spirit, if not the precise letter, of the UK approach to the use of genetic test results (GTRs) to underwrite life insurance. We agree with Dr Pugh’s general contention that there is ethical and philosophical support for curtailment of insurers’ access to, and use of, applicants’ GTR in underwriting. However, we disagree with the contention that broad revisionary implications of certain theories of justice render them unpersuasive. In fact, despite the competing theories, the United Nations Universal Declaration on the Human Genome and Human Rights (UDHGHR) has already made a clear statement on this issue. Article 6 of the Declaration, unanimously adopted in 1997 by 77 countries (including Australia and the UK), along with a resolution for its implementation, states, ‘No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.’ Further, Article 25 of the UN Convention on the Rights of Persons with Disabilities (CRPD) (which Australia and the UK have confirmed) prohibits discrimination against persons with disabilities in the provision of life insurance. These statements are not contingent on the acceptability of the degree of revisionary implications. They are clear, unambiguous statements about the obligations of signatory countries. Despite this, few countries have taken steps commensurate with this expectation, possibly due to the scale of changes required for proper ratification. However, genetic discrimination is recognised as one of the most significant barriers to clinical care and genomic research internationally. Philosophical approaches which ignore human rights obligations and perpetuate the approach that government policy must be palatable to industry in order to be ethically defensible fail to progress the discussion on this issue fruitfully. Canada is one of the few countries which has fully embraced the UDHGHR mandate to prohibit genetic discrimination on human rights grounds. Canada’s recent Genetic Nondiscrimination Act prohibits the use of GTR in service provision (including insurance, except where requested by an applicant), in conjunction with amendments to the Canadian Human Rights Act. This is rare state recognition that genetic discrimination, including in the provision of private life insurance, is a fundamental breach of human rights. It is also a demonstration that revisionist concerns need not prevent countries from making laws consistent with these human rights obligations. When discussing the principle of need, Dr Pugh states that, ‘permitting (the use of GTR) might threaten health needs indirectly, by reducing the number of people willing to undergo genetic testing.’ He discusses arguments for and against this proposition. However, this is not a hypothetical question. There is already extensive international research which demonstrates the deterrent effect of insurance discrimination fears in both clinical and research genetic testing. In 2018, an Australian Joint Parliamentary Committee recommended an urgent ban on using predictive GTR in life insurance underwriting. The government did not respond to the recommendations. Further, despite criticism in multiple inquiries 14 of the insurance industry, its selfregulating model, documented breaches and lack of accountability, the Australian Government appears reluctant to regulate the industry further. Further to Australia’s obligations under the UDHGHR and CRPD, Australia’s Disability Discrimination Act 1992 (Cth) includes genetic predisposition in its definition of disability. The Australian Government AttorneyGeneral’s Department also notes in its own public sector guidance on human rights and antidiscrimination that ‘the CRPD requires countries to prohibit discrimination against people with disability in the provision of health insurance and life insurance.’ The document does not comment on the Australian Government’s failure to prohibit discrimination as required. In 2019, Australia’s peak life insurance body, the Financial Services Council, voluntarily introduced a partial moratorium on member insurers using GTR in underwriting, for policies worth ≤AUD$500 000. This moratorium is temporary, and industry selfregulated without any government oversight. We are part of a team of Australian clinicians, researchers and policy experts who have commenced a government research grant funded project monitoring the effectiveness of the moratorium. 18 This government funding is excellent recognition of the importance of the issue for Australian clinical and research genetics; however, the government’s appetite to act on recommendations if the moratorium fails to be effective remains to be seen. While the UK Code on which Dr Pugh’s paper focuses lacks the regulatory force of legislation, its realisation of the UDHGHR mandate is far superior to the Australian moratorium. However, the UK Code still includes a mechanism for identifying certain GTRs for disclosure above certain financial limits. Governments, including those in the UK and Australia, seem constrained by the need to protect insurer profitability. Notably, some of Dr Pugh’s arguments seem similarly constrained. His formulation of the principle of equity is based explicitly on the insurance industry’s perspective. However, a human rights based formulation of equity provides different insights. The WHO’s definition of equity is ‘the absence of avoidable or remediable differences among groups of people, whether those groups are defined socially, economically, demographically, or geographically.’ Equity under this formulation is about remedying differences among groups to promote equitable application of human rights. Given the inclusion of life insurance in the CRPD, this would mean equal access to life insurance for those with genetic predisposition to disease. Adverse selection (AS) claims were raised in Canada, as is common when genetic discrimination bans are discussed. Expert opinion obtained by the Canadian Office of the Privacy Commissioner when the bill was being considered found there is negligible risk of AS in the near future. 21 As stated by Dr Pugh, there is no evidence Murdoch Children’s Research Institute, Parkville, Victoria, Australia Monash University, Clayton, Victoria, Australia Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Parkville, Victoria, Australia Department of Paediatrics, The University of Melbourne, Parkville, Victoria, Australia