Part B. Regulatory Framework

7. Information and Health Privacy Law

7–1 As a matter of high priority, the Commonwealth, States and Territories should pursue the harmonisation of information and health privacy legislation as it relates to human genetic information. This would be achieved most effectively by developing nationally consistent rules for handling all health information. (See also Recommendation 8–1 in relation to genetic samples.)

7–2 States and Territories and privacy regulators should consider harmonising their privacy regimes, as applicable, in a manner consistent with the Recommend-ations in this Report. (See also Recommendations 7–4 to 7–7, 8–1 to 8–4, 21–1 to 21–3, and 22–1.)

7–3 The Commonwealth, States and Territories should take into account the Recommendations in this Report in developing the proposed National Health Privacy Code. (See also Recommendations 7–4 to 7–7, 8–1 to 8–4, 21–1 to 21–3, and 22–1.)

7–4 The Commonwealth should amend s 6 of the Privacy Act 1988 (Cth) (Privacy Act) to define ‘health information’ to include genetic information about an individual in a form which is or could be predictive of the health of the individual or any of his or her genetic relatives. (See also Recommendation 8–2 in relation to genetic samples.)

7–5 The Commonwealth should amend s 6 of the Privacy Act to define ‘sensitive information’ to include human genetic test information.

7–6 The Commonwealth should amend the Privacy Act to provide that ‘health information’ includes information about an individual who has been dead for 30 years or less. These amendments should include provision for decision making by next-of-kin or an authorised person in relation to the handling of a deceased individual’s health information. (See also Recommendation 8–2 in relation to genetic samples.)

7–7 The Commonwealth should amend the Privacy Act to ensure that all small business operators that hold genetic information are subject to the provisions of the Act. (See also Recommendation 8–2 in relation to genetic samples.)

8. Privacy of Genetic Samples

8–1 The Commonwealth, States and Territories should enact legislation to provide legally enforceable privacy standards for handling genetic samples, including in relation to the collection, storage, use and transfer of samples. The standards should be consistent with those that apply to the handling of genetic information derived from the analysis of genetic samples under existing information and health privacy legislation such as the Privacy Act 1988 (Cth) (Privacy Act).

8–2 The Commonwealth should amend the Privacy Act to extend the coverage of the Information Privacy Principles and National Privacy Principles (or similar privacy principles) to identifiable genetic samples. This may be done by:

1. defining ‘personal information’ and ‘health information’ to include bodily samples from an individual whose identity is apparent or can reasonably be ascertained from the sample; and
2. defining a ‘record’ to include a bodily sample.

8–3 The Commonwealth should amend the Privacy Act to provide that an individual has a right to access his or her own bodily samples, through a nominated medical practitioner, for the purpose of medical testing, diagnosis or treatment. The right of access should be limited to a right to obtain access to part of the sample. Access may be refused where:

1. it is not physically possible to provide part of a sample;
2. providing part of a sample means that the remaining portion is insufficient for the purposes of the organisation retaining it; or
3. releasing a sample to an individual raises public health concerns.

8–4 The Commonwealth should amend the Privacy Act to provide that an individual has a right to access bodily samples of his or her first-degree genetic relatives, through a nominated medical practitioner, where access is necessary to lessen or prevent a serious threat to his or her life, health, or safety, even where the threat is not imminent. The right of access should be limited to a right to obtain access to part of the sample. Where an organisation subject to the Privacy Act receives a request for access, the organisation should be obliged to seek consent from the genetic relative, where practicable, before determining whether to provide access. Access may be refused where:

1. it is not physically possible to provide part of a sample;
2. providing part of a sample means that the remaining portion is insufficient for the purposes of the organisation retaining it;
3. releasing a sample to an individual raises public health concerns; or
4. providing access would have an unreasonable impact upon the privacy of the individual from whom the sample comes.

9. Anti-Discrimination Law

9–1 Discrimination on the ground of genetic status should continue to be dealt with under the framework of existing federal, state and territory anti-discrimination laws, subject to the legislative amendments and other safeguards recommended in this Report.

9–2 The Commonwealth should amend the objects clause of the Disability Discrimination Act 1992 (Cth)(DDA) to clarify that the Act applies to discrimination in relation to past, present, possible future or imputed disability, including discrimination on the ground of genetic status.

9–3 In order to provide a consistent approach to addressing discrimination on the basis of genetic status, the Commonwealth, in consultation with the Human Genetics Commission of Australia and other stakeholders, should:

• amend the definitions of ‘disability’ in the DDA and ‘impairment’ in the regulations made under the Human Rights and Equal Opportunity Commission Act 1986 (Cth) (HREOC Act) to clarify that the legislation applies to discrimination based on genetic status;
• amend the definition of ‘impairment’ in the regulations made under the HREOC Act to clarify the application of the legislation to a disability that may exist in the future; and
• define ‘disability’ in the Workplace Relations Act 1996 (Cth) by reference to the definition of ‘disability’ in the DDA.

9–4 The Commonwealth should amend the definition of ‘impairment’ in the regulations made under the HREOC Act to include discrimination on the basis of association with a person who has an impairment or disability.

9–5 The States and Territories should consider harmonising their anti-discrimination legislation, and other relevant laws, in a manner consistent with the recommendations in this Report.