Evidence of genetic discrimination

26.20 In 2001, Dr Kristine Barlow-Stewart and David Keays published research that identified 48 cases in Australia of alleged discrimination based on genetic information. Most case studies were in the areas of life insurance, income protection insurance and trauma insurance. In these cases, applicants reported their concerns that insurers’ decisions or actions were inappropriate, based on misinformation or a lack of understanding of genetic information and the nature of genetic disorders.^[21]

26.21 The Centre for Law and Genetics noted, however, that:

The Barlow-Stewart and Keays study reported in the Journal of Law and Medicine indicates some difficulties in this area, but the limitations of this study, in particular, it being based on unverified consumer accounts, need to be acknowledged. Nevertheless, taken together with anecdotal accounts of clinicians and genetic counsellors, it provides some evidence that there are individuals who are experiencing disadvantage in their dealing with insurance companies as a result of their genetic status.^[22]

26.22 In its submission, IFSA indicated that the Barlow-Stewart and Keays findings were at odds with the industry’s own research, which indicated that life insurers have received no complaints with respect to underwriting decisions involving genetic test results.^[23]

26.23 David Keays, in his submission to the Inquiry, included an additional three case studies of alleged discrimination in insurance.^[24] In the first case study the applicant stated that he was refused income protection insurance on the basis of his family medical history of myotonic dystrophy. The insurance company informed him that he would only be considered for insurance if he underwent genetic testing. He did undergo a test, the result was negative and he was able to obtain insurance cover.

26.24 IFSA responded in its submission to the Inquiry that:

This case reported in 1998 could not occur today as members of IFSA are prevented from requiring individuals to undergo genetic testing.^[25]

26.25 The second case study involved an applicant who had undergone a genetic test for Charcot-Marie Tooth disease (CMT) to assist in the diagnosis of a family member. The genetic test showed that he had inherited the genetic mutation that causes CMT. Prior to the genetic test, the applicant had not been diagnosed with CMT because he suffered only very mild symptoms. He was subsequently denied income protection insurance and was told that this was because of his genetic test result.

26.26 In IFSA’s view:

The denial of insurance in this case comes within the ambit of the relevant legislative exemptions and therefore is not regarded as unlawful discrimination. If the application was for term life insurance [rather than income protection insurance], then the applicant would be most likely to be accepted at standard rates.^[26]

26.27 The third case study involved an applicant with a family medical history and positive genetic test result for Huntington’s disease who was refused life insurance. The applicant had applied for a home loan that was subject to a requirement that she have life insurance. The bank refused her application for a loan, as she did not qualify for life insurance.

26.28 IFSA again commented that the decision appeared to come within the ambit of the relevant legislative exception and did not, therefore, amount to unlawful discrimination.^[27]

26.29 The author of a separate confidential submission to the Inquiry stated that he was denied life insurance, and only provided with disability insurance on unfavourable terms, based on his family medical history of Huntington’s disease. The author stated that the insurance companies he approached were provided with a genetic test result indicating that he was not at risk for the disease but refused to take the genetic test result into consideration. The author indicated that this situation had severely affected his ability to obtain loans.^[28]

26.30 The Association of Genetic Support of Australasia briefly referred to two cases of alleged genetic discrimination in its submission to the Inquiry:

There is discrimination occurring in the area of insurance. A family applied for life insurance for their child with Marfan syndrome and was refused. A carrier of Fabry’s disease with a specialist report stating normal life expectancy was refused life insurance.^[29]

26.31 These individual case studies and anecdotal accounts, although limited in number, have provided a valuable source of information for the Inquiry about the way in which genetic information is used by insurers. The Inquiry notes that in some of these cases the insurer appears to have acted on the basis of a misunderstanding of the genetic information provided and that some decisions may not have been consistent with anti-discrimination law. In others, however, there appears to have been a lawful decision by the insurer that the risk the applicant would bring to the insurance pool was too high to accept. It is also important to note that some of the examples discussed above pre-dated the adoption of IFSA’s Genetic Testing Policy, which is described in Chapter 25 and discussed further below.

26.32 There is still considerable uncertainty about the nature and extent of discrimination in this area and a need for further detailed empirical research. To this end, Associate Professor Margaret Otlowski, Dr Sandra Taylor and Dr Kristine Barlow-Stewart have established the Genetic Discrimination Project Team, funded by the Australian Research Council, and are conducting research into the nature and extent of genetic discrimination in Australia. The project team’s work is due to be completed in 2004.

26.33 Genetic information, whether in the form of genetic test results or family medical history, is currently being used by the insurance industry to assess applications for mutually rated insurance products. The case studies examined by the Inquiry indicate that the use of genetic information in insurance sometimes leaves an applicant with the impression that the underwriting decision was not well informed or fair—even if the insurer’s actions are permitted by law. These issues and others raised in submissions are discussed further below.