Part F looks at systemic issues of privacy and ethical practice in the provision of medical and allied health services by doctors, genetic counsellors and other health professionals.
Historically, confidentiality has been a cornerstone of the doctor-patient relationship. However, genetic information about an individual may have important health implications for that person’s genetic relatives. Chapter 21 focuses on questions about how individual patients and their doctors (and other health professionals, including genetic counsellors) should collect and deal with genetic information about genetic relatives, derived in the course of diagnosis, treatment or counselling.
The Inquiry concludes that there may be exceptional circumstances in which health professionals should be permitted to disclose personal genetic information to genetic relatives without the consent of their patient. Consequently, the Inquiry recommends amending the Privacy Act to permit such disclosures in circumstances where disclosure is necessary to lessen or prevent a serious threat to an individual’s life, health, or safety, even where the genetic risk is not ‘imminent’ (which is the current language of the Act).
In Chapter 21, the Inquiry also recommends that the Privacy Act should be amended to provide that an individual has a limited right to access genetic information about first-degree genetic relatives where access is necessary to lessen or prevent a serious threat to their life, health, or safety, even where the threat is not imminent.
The collection and disclosure of family genetic information is central to the operation of genetic registers and the conduct of genetic counselling. The primary purpose of genetic registers is to identify and contact members of families who are at significantly increased risk of developing an inherited disorder or of having affected children. Information on a genetic register generally will comprise genetic information about many biological relatives and also may contain genetic samples.
Chapter 22 deals with the operation of genetic registers and examines whether the existing regulatory framework to protect the privacy of genetic information collected and held on genetic registers is adequate. Medical practitioners already have received an authorisation (a ‘Public Interest Determination’ or PID) from the federal Privacy Commissioner to collect family medical history information for clinical purposes without breaching the Privacy Act. The Inquiry recommends that organisations operating family cancer registers and other genetic registers also should receive a PID in order to continue collecting family medical history information without breaching privacy legislation.
Genetic test information may have profound medical and psychological implications for individuals. These implications will depend on the nature and context of genetic testing—the genetic condition being tested for and the reasons for testing. The results and implications of genetic testing often will be complex and difficult to understand and it is therefore critically important that individuals are provided with appropriate information about a genetic test and, in some cases, assisted in decision making through genetic counselling.
Chapter 23 discusses genetic counselling, the need for genetic counselling services, and issues related to its further development as a professional discipline. The Inquiry recommends that the Commonwealth, States and Territories should develop strategies to assess and respond to the need for increased and adequately resourced genetic counselling services throughout Australia and examine options for the further development of genetic counselling as a recognised health profession, including the possibility of new certification, accreditation or registration systems for genetic counsellors.
The Inquiry recommends that the HGCA should develop guidelines, in consultation with interested organisations, to 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. The Inquiry also recommends approaches to 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.
Chapter 24 discusses the types of population genetic screening programs that can be undertaken and the guidelines that have been developed to regulate them. Such programs involve testing large numbers of people—who usually have no disease symptoms—for their genetic status in relation to a particular gene or condition. Examples of population genetic screening programs include the Tay-Sachs screening program that operates in Jewish schools in Sydney and Melbourne, and the ‘HaemScreen’ (haemochromatosis) program operated at some places of employment. Of course, in one sense, there is a universal screening program in Australia, since virtually all newborns are given the ‘heel prick’ test to screen for a range of genetic conditions, such as phenylketonuria, hypothyroidism and galactosaemia.
Because population genetic screening programs raise a range of privacy, ethical and other issues, the Inquiry recommends this as another area in which AHMAC should develop nationally consistent standards. Standards in this context should cover informed consent, testing standards, quality assurance, cost-benefit considerations, and reporting and data collection.