The harm of non-consensual genetic testing

12.10 In determining whether the non-consensual collection and use of bodily samples for the purpose of genetic testing should be proscribed by law and, if so, how, it is necessary to examine the harm that may arise from this conduct.

12.11 The harm caused by non-consensual genetic testing may be categorised in various ways, depending on whether one looks at the collection of the genetic sample, the testing of the sample to derive genetic information from it, or the possible uses of the information so derived.

12.12 The collection of a sample may, in some circumstances, involve a physical harm or a trespass to the person (a battery), as when a person is held down and a bodily sample is taken by force. Collection may also result in emotional harm. Emotional harm may result from situations where, from the perspective of the individual concerned, intimate bodily samples (such as menstrual blood or semen) are taken, or kinship or identity is questioned.

12.13 The most obvious harm arising from testing of the sample is the intrusion on basic human dignity and autonomy. The harm may be also characterised as involving a breach of information privacy.[9] Genetic testing may result in the disclosure of sensitive personal information of many kinds. Testing can reveal information about the present and future health of an individual, an individual’s identity, or his or her parentage or kinship. The fact that harm may be caused by the non-consensual disclosure of these kinds of information is recognised by laws that proscribe disclosure in other contexts, including legal and statutory duties of confidentiality, and information and health privacy legislation.

12.14 The possible uses of the information derived from non-consensual testing may also give rise to harm, including harm caused:

    • by the use of genetic information by employers, insurers and others for discriminatory purposes;

    • to individuals who involuntarily learn about their long-term health prognosis and other physical and behavioural characteristics, in breach of their ‘right not to know’;[10]

    • by media publicity about an individual’s genetic characteristics, especially where that individual is a celebrity or otherwise newsworthy;

    • by the use of genetic information by police in criminal proceedings or by litigants in civil proceedings; and

    • by disruption to family relationships and harmony where parentage or other kinship information is disclosed.

12.15 The Inquiry is of the view that non-consensual genetic testing may compromise significant interests, and that these interests merit protection under the law. To do so would reflect the ethical consideration of respect for individual freedom and autonomy, which is the basis for protecting privacy and providing remedies for the harm caused by breaches of privacy.

[9] As discussed in Ch 7, ‘information privacy’ can be defined as the right of an individual to control the collection, use and disclosure of information relating to them (personal information).

[10] The right not to know is discussed in Ch 7.