Position Statement. Genetic Testing and Life Insurance in Australia

Transcription

1 HUMAN GENETICS SOCIETY OF AUSTRALASIA ARBN (Incorporated Under the Associations Incorporation Act) The liability of members is limited PO Box 6012, Alexandria, NSW 2015 ABN No Telephone: Fax: Position Statement Title Document Number: Publication Date: 19 th March 2013 Replaces: 2008 PSO1 Review Date: March 2016 Genetic information which includes a family medical history and the results of genetic tests may have implications for life insurance cover, for products that include death cover, critical illness (trauma), disability (income protection) business and bank loans which require a life insurance policy, and cover for total and permanent disablement. Underwriting for life insurance products involves risk assessment of applicants, including their health status, which is in contrast to health insurance in Australia. i This focus on life insurance and genetics, as distinct from health insurance, flows from the fact that Australia s health system, Medicare, is supported through basic contributions via a taxation levy based on individual taxable income, with some exemption categories. The contributions do not cover actual costs and are not risk rated but community rated: everyone pays the same premium regardless of their health status. ii Similarly, private health insurance is community rather than individually rated in Australia. Therefore, predictive genetic testing raises specific issues in relation to risk-rated life insurance but not health insurance in Australia. Predictive genetic testing Predictive genetic testing refers to testing in a person who currently does not have symptoms or signs of disease, but may be at increased risk due to their family history or other factors including genetic testing in a genetic relative. Even when inherited predisposition conferring high risk can be confirmed, it will usually be impossible to accurately predict age of onset of the condition, its rate of progression, its severity or age at death. The results of an individual s test may have health implications for other blood relatives. Predictive genetic testing is currently available for a limited, but increasing number of inherited conditions including some forms of cancer (for example, hereditary breast/ovarian cancer, Lynch syndrome), some forms of heart disease and some neurological conditions such as Huntington disease. New gene loci involved in other common disorders are being identified at a rapid rate. March 2013 Page 1 of 5

2 Whole genome sequencing is also becoming available, increasing the likelihood of the identification of inherited predisposition to genetic conditions without the background of a family history. For some conditions such as breast and ovarian cancer or some forms of heart disease, genetic risk information has the potential to provide a significant reduction in morbidity and mortality where early medical intervention or lifestyle changes can lessen or eradicate the expression of disease. Predictive test information/personal health information The HGSA believes that: The primary aim of predictive genetic testing is to obtain genetic information* for the improved health and well-being of the individual being tested. Access to predictive genetic testing and the information it provides is the right of an individual within the limitations that resource allocation may dictate. A decision to undertake a predictive genetic test* should be based on free choice without coercion. Valid consent also requires the health professional to provide all relevant information, and the person to have the capacity to give consent, that is, the person must be able to understand the implications of having the test. The information obtained through predictive genetic testing is personal health information and as such should be treated confidentially. It should not be used for any purpose outside the purpose for which it was collected unless the person whose information it is, has consented to use of the information for that secondary purpose, or where use or disclosure is authorised under law. Individuals rights to privacy are reinforced in the Commonwealth Privacy Act, 1988 amended in 2007 iii and in States Privacy Legislation where it exists. (See the HGSA Position Statement and Guidance on the Protection of Human Genetic Information for further information on jurisdictional law and policy on privacy iv ). Predictive genetic information should not be the basis for any social or economic discrimination or disadvantage. Life insurance and genetic/predictive genetic testing In light of the above and with regard to life insurance products, the HGSA believes that: The issuance of a life insurance contract should not be contingent on an individual undertaking a genetic test. It is not appropriate for any individual or organisation to engage in actions which coerce individuals to undertake genetic tests against their autonomous judgement or which inhibit individuals from taking tests for fear of social or economic disadvantage. March 2013 Page 2 of 5

3 Note: The HGSA notes the policy of the Financial Services Council (FSC), the organisation that represents the life insurance industry to Government, regulatory agencies, consumers and the community. The FSC Genetic Testing Policy v (industry standard #11 since 2005) vi states that FSC members will not require an applicant to undergo a genetic test when applying for insurance. However, the policy requires the results of any previously undertaken genetic tests to be made available upon request. Standard # 16 (2005) Family Medical History also states that collection of family health history information should only relate to first degree relatives (parents, children and siblings) vii The HGSA believes an individual has the right not to know their predictive genetic test result. For example, an individual may have previously undertaken predictive testing only for the benefit of other family members and chosen not to know the result. The HGSA acknowledges that under law, an applicant for a life insurance product is required to disclose any health, genetic and relevant information known to the applicant. In relation to the above example, this would include that a test has been undertaken and that results are not known. It is not appropriate for any individual or organisation to seek or gain access to predictive test results except where sanctioned freely by the individual or ordered by legal decision. Most genetic conditions will carry implications for certain other members of the family of an index person and that the privacy of individuals who are not party to an insurance contract must be preserved. Note: The FSC Genetic Testing Policy states that FSC members will require the results of any genetic testing on the applicant to be made available on request. Under law, the applicant is required to disclose any information that may impact on the offer of insurance viii. This would include health information that the applicant knows about his or her self and family health history, but would not require personally identifying information of relatives. (See also Genetic Information and Life Insurance Products in Australia produced by the NSW Centre for Genetics Education. ix Where the existence of, or result of, a predictive genetic test has been declared by an individual, such information should not be used for assessing the insurance risk of any other family member applying to the same company. Note: IFSA Policy states that IFSA members will not use an individual s genetic test information to assess another family member s risk when the same company is underwriting policies for different family members. Long-term benefits both to individuals, to the community and to insurers will result from predictive genetic testing and subsequent intervention to ameliorate the consequences of inherited disorders. March 2013 Page 3 of 5

4 The HGSA: Urges the insurance industry to not require disclosure of genetic testing undertaken as part of a research project as it may impact upon research participation Urges the insurance industry to implement a moratorium on the use of predictive genetic information pending improved actuarial estimates of the impact of such information on adverse selection. Acknowledges that predictive genetic information could potentially be utilised by an individual to engage in adverse selection*. The HGSA believes that the number of conditions to which adverse selection could currently apply is very small and that the disorders are relatively uncommon and that concern about adverse selection has no clearly demonstrated actuarial basis. Urges close liaison between the insurance industry and the genetics profession to more accurately interpret predictive test information and its implications for estimating actuarial risk. Urges the insurance industry to review its actuarial modelling of the impact of predictable genetic disease. The HGSA wishes to promote trust and confidence between genetics professionals and the insurance industry and encourages the industry to seek statistical molecular and epidemiological information from geneticists who are expert in relevant areas or conditions. Supports moves to implement legislation for the purpose of protecting individuals and their families against infringement of privacy and against discrimination arising from access to and abuse of predictive genetic information. Further information on genetic testing and life insurance in Australia is available from: The Financial Services Council (FSC) [online]. Available from: [Accessed Nov 2012] Genetic Information and Life Insurance Products in Australia produced by the NSW Centre for Genetics Education * Definitions for the purpose of this document "predictive genetic information" is taken to mean a refinement of risk for an individual based on the measurement of specific genotype(s) ("predictive genetic test(s)") and not risk that could be deduced by reference to a family history alone. "insurance" can be considered to include life insurance, disability insurance and crisis/trauma insurance but not health insurance while the latter remains subject to Section 73(2A) of the Commonwealth's National Health Act (1953) which precludes refusal to insure persons by reason of their state of health. "adverse selection" is a term used in the insurance industry to describe the situation in which the distribution of risk in the pool of insured individuals is skewed adversely as, for example, March 2013 Page 4 of 5

5 when a high risk group selectively takes out insurance or seeks abnormally high insurance cover i. This contrasts with the United States where health insurance has been the principal area of concern. ii. Otlowski M, Barlow-Stewart K, Taylor S, Stranger M and Treloar S (2007). Investigating genetic discrimination in the Australian life insurance sector: use of genetic test results in underwriting Aust J Law and Medicine 14: iii. Commonwealth Privacy Act, 1988 amended in B439/$file/Privacy1988_WD02HYP.pdf iv. HGSA Position Statement and Guidance on The Protection of Human Genetic Information, v. The Financial Services Council (FSC) [online]. Available from: [Accessed Nov 2012] vi. The Financial Services Council (FSC) [online]. Standard 11 (2005). Genetic testing policy. Available from: [Accessed Nov 2012] Because of the potentially anti-competitive effect of this policy, authorisation for the Standard had to be obtained from the Australian Competition and Consumer Commission (ACCC) in 2002 and re-authorised in Vii Standard 16(2005). Family medical History. Available from: (Accessed Nov 2012) Viii Insurance Contracts Act 1984 (Cth), s 21(1). ix Genetic Information and Life Insurance Products in Australia produced by the NSW Centre for Genetics Education2012, March 2013 Page 5 of 5