Genetic privacy
Genetic testing information is sensitive for a number of reasons:
- It may yield information on only about yourself, but also about your relatives, as your genetic make-up is similar to that of you or family.
- Once obtained, genetic information could be used in a way other than initially intended. Further, the information could be used in a range of personal matters where discrimination or preferential treatment may occur. (For example, people predisposed to a particular illness might have problems when arranging life insurance. For more, see our article in Focus on Health December 2000, and the following recent articles concerning genetic privacy: 'Biobanks' and genetic data linkage: can Australian privacy regulation keep up? and Genetic privacy: re-defining identification.)
- Every cell in a person's body (except sex cells and red blood cells) contains all their genes. One cell can therefore be analysed to provide the entire genetic code of a person which can be used for a variety of purposes.
- Genetic information gives insights into a person's predisposition to illness and disease.
Genetic information is useful to people including:
- doctors and health care providers;
- medical researchers - to investigate the cause of certain health conditions;
- forensic scientists - to help identify suspects;
- insurance companies - to predict health risks;
- employers who provide health care benefits - to predict employees' future health; and
- insurance companies.
If genetic information is stored, clearly it must be protected, possibly with different guidelines applying to the diverse range of groups that would find the information useful. Much of its current protection is based on codes of professional ethics, in particular the Australian Medical Association's code of ethics.
The National Health and Medical Research Council (NHMRC) also provides guidelines on how to deal with such information. However, these guidelines are not enforceable.
The advent of genetic privacy is perhaps best described by the Canadian Privacy Commissioner in a report on genetic testing and privacy in 1992:
"No surveillance technology is more threatening to than that designed to unlock the information contained in human genes. ... [We are] seeking a medically powerful but potentially dangerous treasure: information about how our genes make us tick. Today we can ask who among us is likely to have healthy babies or fall ill with a genetic disease. In the future, we may be able to use genetic testing to tell us who will be smart, be anti-social, work hard, be athletic or conform to prevailing standards of beauty. One is struck by the parallel between unlocking the gene in the nineties and unlocking the atom in the forties. In both cases the excitement of discovery dulled critical assessment of the implications. In both cases we allowed scientists to unleash forces which can alter life as we know it, paid for their efforts with public funds and, at least initially, set few ethical or legal controls on the enterprise."
The Australian Democrats introduced the Genetic Privacy and Non-Discrimination Bill 1998 in March 1998. It recognises the difference between genetic privacy and general information privacy.
The Genetic Privacy Bill has not progressed through parliament. A Senate Committee on the Genetic Privacy Bill recommended that it not go ahead, in the belief that genetic information was not yet widely used in the community. It saw no evidence of abuse of the information or resulting discrimination. However, the Government has indicated that it shares community concerns about the complex privacy and discrimination issues and the potential for abuse or discrimination.
The Genetic Privacy and Non-discrimination Bill 1998 (Cth), which aims to protect the genetic privacy of individuals, prohibit genetic discrimination and to provide for the collection, storage and analysis of DNA samples, and for related purposes, was reintroduced into the Senate on 17 November 2004. The Bill has not progressed.
However, in September 2006, the Privacy Legislation Amendment Act 2006 (Cth) was passed. This Act implements some of the reforms of the Australian Law Reform Commission and Australian Health Ethics Committee's report, entitled Essentially Yours: The Protection of Human Genetic Information in Australia (March 2003) (the Report). The Act amends the definition of health information to include genetic information about an individual in a form that is, or could be, predictive of the health of the individual or a genetic relative of the individual. A genetic relative is defined as a person related by blood, such as a sibling, parent or descendant. The Act also inserts a catch-all definition of genetic information to ensure that it is sensitive information even if it is not health information (for example, genetic information about parentage or kinship). This will ensure that all forms of genetic information will have the additional protection that is afforded to 'sensitive' information under the NPPs.
The Act also allows an organisation that is a health service provider to disclose the genetic information of an individual (without the individual's consent) to a genetic relative of the individual if the organisation:
- reasonably believes that the information could be used or disclosed to lessen or prevent a serious threat to the life, health or safety of the genetic relative (such threat need not be imminent); and
- complies with any genetic information guidelines issued by the National Health and Medical Research Council (NHMRC) and approved by the Privacy Commissioner.
The Act empowers the Privacy Commissioner to approve guidelines issued by the
NHMRC that relate to the use and disclosure of genetic information for the
purposes of lessening or preventing a serious threat to the life, health or
safety of an individual or their genetic relative. It will be interesting to see
the details of the Guidelines to be issued by the NHMRC, which will need to
balance an individual's privacy rights with the rights of genetic relatives to
access the individual's personal genetic information, if a health service
provider believes that disclosure is warranted in the particular circumstances.
