Testing children and access to insurance

26.112 A further issue raised in public meetings was whether individuals should be obliged to disclose the results of a genetic test conducted on them as a child, as a result of a decision made on their behalf by a parent or guardian, when they seek insurance later in life.^[99] A related issue is whether a parent may be unduly influenced by the potential use of genetic information in insurance when making health related decisions on behalf of a child. This concern was highlighted in the following submission received by the Inquiry:

From a personal point of view, I did not register my son’s disability as I didn’t want any insurance companies to discriminate against him or in the future any of his children or their children. Even if I wanted to, I would not have a genetic test undertaken on my son due to the same reason—lack of confidentiality and possible future discrimination.^[100]

26.113 The genetic testing of children, with the exception of DNA parentage testing and testing for law enforcement purposes, is not generally regulated by legislation. However, the World Health Organisation,^[101] the Nuffield Council on Bioethics,^[102] the American Society of Human Genetics^[103] and the HGSA^[104] have developed guidelines on the genetic testing of children. These guidelines proceed on the basis that predictive testing of minors should be restricted to situations in which the testing provides treatment options that are of direct benefit to the child. Testing for adult onset disease, for which there is no known treatment or preventive strategy, should not be carried out on children. Such testing should be deferred until adulthood, or until individuals are able to appreciate the implications of testing and make informed decisions for themselves.

26.114 As discussed in Chapter 25, an applicant for insurance is obliged to disclose every matter that is known to be relevant, or which reasonably ought to be known to be relevant, to the insurer. Where an individual is aware that he or she underwent a genetic test as a child, that individual is obliged under the current law to disclose the results for insurance purposes, if relevant to the risk. As a result, while the circumstances in which children undergo predictive genetic testing may be limited in practice, the potential for adverse insurance consequences still exists.

Submissions and consultations

26.115 At a public meeting held in Melbourne, a member of the public explained the choices that parents face when deciding whether to genetically test children for the purpose of clinical management:

I have now submitted my DNA for testing, and it’s important from my children’s point of view that they know whether they have Marfan Syndrome. If they do then we can treat them early and perhaps prevent a premature death. Who should get the right to that information? My personal view at the moment is that they should not even be told themselves. They’re at a young age that they are being genetically tested because they can then answer honestly on a form they have never been genetically tested. If they do say they have Marfan’s Syndrome they will be discriminated against quite clearly by companies whose responsibilities are to shareholders and not to the customer.^[105]

26.116 The Australian Medical Association submitted that:

Individual[s] should be given the option to have their childhood genetic test declared ‘null and void’ to insurers when that individual reaches the legal age of consent.^[106]

26.117 Margaret Otlowski has commented that:

In view of the strong terms of the United Nations Convention on the Rights of the Child, to which Australia is a party, it is essential that the interests of children are not compromised and that decisions whether to subject a child to genetic testing can freely be made on the basis of medical advice, without fear of later repercussions for the child. Moreover, where genetic testing has been undertaken on a person whilst a minor, (ie at a time that they are not in a position to personally give a full and informed consent to testing), one may question the fairness of requiring that person in later life to disclose to insurers information about the results of those tests. An unqualified obligation to disclose existing genetic test information clearly presents problems for individuals in these circumstances.^[107]

26.118 However, IFSA was of the view that:

The applicant’s knowledge of the test result should be the determining factor for disclosure, rather than the circumstances in which the test was conducted. The question of whether or not, and what genetic tests should be performed on a child, raises societal and medical issues, which are not appropriately addressed by limiting the utmost good faith principle.^[108]

26.119 In relation to those tests that have a health benefit for the child, the Human Genetics Society of Australasia stated that:

Such tests may be done for children at risk of an adult-onset condition where there is a direct health benefit to testing in childhood. Testing enables screening strategies to be utilised and so minimise the risk of harm to the individual. It would seem appropriate to disclose the results of such a test when applying for insurance as an adult.^[109]

Inquiry’s views

26.120 The Inquiry is of the view that guidelines, such as those developed by the HGSA,^[110] provide a valuable ethical framework for the genetic testing of children. Predictive genetic testing should be restricted to situations in which the result is likely to be of direct benefit to the child through medical surveillance or intervention. In particular, the Inquiry agrees that genetic testing for adult onset conditions for which there is no known treatment should be deferred until individuals are capable of making informed decisions for themselves.

26.121 The Inquiry recognises that the obligation to disclose to insurers the results of genetic tests undertaken as a child is a difficult and sensitive issue on which there are differing views. The Inquiry notes, however, that where testing is undertaken in accordance with existing ethical guidelines, the circumstances in which children are tested will be quite limited. In those cases in which testing is conducted, it is likely that there will be other available health information (such as family medical history or a record of clinical treatment), which existing law requires to be disclosed to an insurer, whatever position is taken about the disclosure of a minor’s genetic test results.

26.122 The Inquiry supports the principle that, to the greatest extent possible, children should be involved in decision making processes and that both the child and the child’s parents or guardians should be counselled on the implications of any proposed genetic test. However, because of their age, children are not always capable of making informed decisions for themselves. In these circumstances parents very often make decisions on behalf of their children, including decisions in relation to health, which have implications for their children in later life.

26.123 As noted above, the Inquiry has generally resisted making recommendations based on genetic exceptionalism. The Inquiry is of the view that providing more favourable treatment to insurance applicants because of the genetic basis of their condition creates an arbitrary distinction between individuals according to the source of their ill-health or disability. Many people undergo medical testing and treatment as children. Where known to the applicant, this information must be disclosed in an application for insurance if it is material to the risk insured. In the Inquiry’s view there is insufficient justification to draw a distinction between genetic tests undertaken as a child and other medical tests undertaken as a child, particularly where those tests were undertaken for the benefit of the child’s health.

26.124 For these reasons, and in conformity with Recommendation 26–1, the Inquiry is of the view that an applicant for insurance should continue to be subject to an obligation to disclose known results of a genetic test undertaken while the applicant was a minor, where those results are material to the risk insured.