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Genetic discrimination in life insurance: a human rights issue
  1. Jane Tiller1,2,
  2. Martin B Delatycki3,4
  1. 1 Murdoch Children’s Research Institute, Parkville, Victoria, Australia
  2. 2 Monash University, Clayton, Victoria, Australia
  3. 3 Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Parkville, Victoria, Australia
  4. 4 Department of Paediatrics, The University of Melbourne, Parkville, Victoria, Australia
  1. Correspondence to Professor Martin B Delatycki, Murdoch Childrens Research Institute - Bruce Lefroy Centre for Genetic Health Research, Parkville, VIC 19618, Australia; martin.delatycki{at}

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In this issue of Journal of Medical Ethics, Pugh1 offers a pluralist justice-based 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,2 unanimously adopted in 1997 by 77 countries (including Australia and the UK), along with a resolution for its implementation,3 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 …

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  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.

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