Part F. Health Services

21. Health Professionals and Family Genetic Information

21–1 The Commonwealth should amend the Privacy Act 1988 (Cth) (Privacy Act) to permit a health professional to disclose genetic information about his or her patient to a genetic relative of that patient where the disclosure is necessary to lessen or prevent a serious threat to an individual’s life, health or safety, even where the threat is not imminent.

21–2 The National Health and Medical Research Council (NHMRC), in consultation with the Office of the Federal Privacy Commissioner, should develop guidelines for health professionals dealing with disclosure of genetic information to the genetic relatives of their patients. The guidelines should address the circumstances in which disclosure to genetic relatives is ethically justified or required, and the need for patients to be counselled about the disclosure of information in these circumstances. The guidelines should be made pursuant to either new provisions of the Privacy Act (amended consistently with Recommendation 21–1) or s 7 of the National Health and Medical Research Council Act 1992 (Cth).

21–3 The Commonwealth should amend the Privacy Act to provide that an individual has a right to access genetic information about first-degree genetic relatives where such access is necessary to lessen or prevent a serious threat to the individual’s life, health, or safety, even where the threat is not imminent. Where an organisation subject to the Privacy Act receives a request for access, the organisation should be obliged to seek consent, where practicable, before determining whether to provide access. The right of access should be exercisable only through a nominated medical practitioner or genetic counsellor and may be refused where providing access would have an unreasonable impact upon the privacy of the individual whose information is sought or other individuals. (See also Recommendation 8–4.)

21–4 In developing the guidelines referred to in Recommendation 21–2, the NHMRC should include advice to health professionals in dealing with requests for access to genetic information by the genetic relatives of their patients.

22. Genetic Registers and Family Genetic Information

22–1 Organisations operating genetic registers should seek a Public Interest Determination (PID) under the Privacy Act 1988 (Cth), where applicable, to ensure that they can continue to collect family medical history information from registrants without breaching the National Privacy Principles. The PID process should review whether any other acts or practices of genetic registers, including those involving the use or disclosure of personal information, may justify exemption under the PID.

22–2 The National Health and Medical Research Council (NHMRC) should review the Guidelines for Genetic Registers and Associated Use of Genetic Material with particular regard to the de-identification of information. In conducting its review, the NHMRC should ensure that the Guidelines are consistent with privacy laws.

23. Genetic Counselling and Medical Education

23–1 As a matter of priority, the Commonwealth, States and Territories should develop strategies to assess and respond to the need for increased and adequately resourced genetic counselling services.

23–2 The Commonwealth, States and Territories should examine options for the further development of genetic counselling as a recognised health profession, including the use of certification, accreditation or registration systems for genetic counsellors.

23–3 The Human Genetics Commission of Australia (HGCA) should develop genetic testing and counselling practice guidelines, in consultation with the Human Genetics Society of Australasia, state clinical genetics services, and other interested organisations. These guidelines should identify genetic tests, or categories of genetic tests, that require special treatment in relation to procedures for ordering testing and ensuring access to genetic counselling. (See also Recommendation 5–3.)

23–4 The HGCA should work with the Australian Medical Council, the Committee of Deans of Australian Medical Schools, and the Committee of Presidents of Medical Colleges to develop an integrated approach to medical education and training in human genetics. This approach should ensure that present and future medical practitioners are appropriately trained and equipped in clinical genetics and in the use of relevant genetic counselling and genetic services.

23–5 The HGCA should work collaboratively with key professional and educational bodies to design and enhance education and training programs aimed at improving genetic health services provided by medical practitioners and other health professionals.

24. Population Genetic Screening

24–1 The Australian Health Ministers’ Advisory Council, in cooperation with the National Health and Medical Research Council, the Human Genetics Commission of Australia and key professional bodies, should develop national standards in relation to the development and implementation of:

1. population genetic screening programs—covering such matters as informed consent, counselling, testing standards, quality assurance, cost-benefit considerations, and reporting and data collection; and
2. newborn screening programs—promoting both universal participation and informed decision making by parents.