Genetic discrimination: Too few data

Reports of discrimination based on genetic test results have been documented in overseas jurisdictions since the early 1990s, including the United States¹ and the United Kingdom,² but it is only in more recent years that evidence has been emerging that genetic discrimination is also occurring in Australia.³ Following the first documented case study of genetic discrimination in Australia by Dr Sandy Taylor in 1998,⁴ two further Australian-based studies undertaken by Dr Kristine Barlow Stewart and David Keays have identified a total of 48 reported cases of genetic discrimination, primarily in the insurance and employment contexts.⁵ As accounts of genetic discrimination in Australia have come to light, interest in this newly emerging phenomenon, and concern about its implications for individuals affected, have been increasing. This growing level of concern is highlighted in the current national inquiry being undertaken in Australia by the Australian Federal Government which will examine the protection of human genetic information, with a strong focus on genetic discrimination.⁶

The wide-ranging consequences of genetic discrimination, both for the individual concerned and society as a whole, have been outlined in a growing body of literature on the subject⁷ and genetic discrimination has been recognised internationally as a human rights issue which carries significant social, legal and policy implications.⁸ Discrimination against individuals on the basis of genetic factors has the potential to generate significant social, health and economic burdens for society as it diminishes the opportunities of genetically at-risk individuals in a range of contexts (for example insurance, employment) and for some, may also impact upon potentially helpful engagement with preventive genetic medicine. Whilst there appears to be a growing acceptance across a number of jurisdictions, including Australia, that reform initiatives are required to tackle the problem of genetic discrimination, there is less agreement about what form such reform measures should take. In developing and later evaluating reform initiatives in this area, it is clearly an advantage to be able to draw on reliable empirical data documenting the nature and extent of the problem.

Research which validates the claim that genetic discrimination is occurring has been limited, both in scope and design. There has, as yet, been no comprehensive co-ordinated empirical research about the nature and extent of genetic discrimination across countries where genetic services are highly developed. More significantly, the studies undertaken to date rely predominantly on unverified and in many instances, anonymous accounts of individuals' subjective impressions of whether they received inequitable treatment from third parties such as employers or insurers. Although new initiatives are now being undertaken within the insurance industry in this regard,⁹ there has also been a general absence of systematic documentation research into current third party policies and practices, by which responses to issues associated with the genetic profiles of individuals are determined. Because of such limitations, studies of genetic discrimination to date should be viewed with caution.¹⁰ Whilst they establish that individuals may believe that they have been discriminated against on the basis of genetic factors, they leave little scope for objective assessment of the alleged discrimination: whether it was without legal justification and therefore unlawful, or whether it may have been legally justified pursuant to the exemptions that both insurers and employers have from disability discrimination.¹¹ Therefore comprehensive investigations of genetic discrimination in regions where genetic tests are available are urgently needed.