Legal control over personal genetic data: how far should we go?

Public and legislative debate about the misuse of personal information and data has been building for the best part of the past twenty years. Technological developments making the collection, storage and use of information easier have increased public awareness and concern about the need for privacy.

A number of common laws provide incidental privacy protection for Australians, and so-called privacy rights are reflected under international conventions which Australia recognises, namely Article 12 of the Universal declaration of Human Rights (1948) and Article 17 of the International Convenant on Civil and political Rights (1966) which provides:

. . .no one shall be subject to arbitrary or unlawful interference with his [or her] privacy.

A privacy right of this scope should form the basis of the protection and legal control over the use of personal information in Australia and provide the basis of a comprehensive domestic legal privacy regime.

Personal information should be protected through a comprehensive and national enforceable regime. As a legislator I believe in the fundamental principle that a person has the right to know what personal information is held about them, whether the information is lawfully held and whether or not that information is correct.

Genetic technology, one of the great revolutions in medicine (as the headlines say) is now on its way to a clinic near you. The US$3billion federally funded Human Genome Project, completed only a few months ago already provides the map from which phenotypes (diseased, behavioral or otherwise) and genetic sequences will be linked.

Genetic information will pose some of the most challenging public policy and legislative questions over the coming years, as we struggle to ensure that the potentially positive aspects of this information revolution are encouraged and pursued and that the community is protected from possible negative applications.

But these already challenging decisions and questions are further complicated by the fact that the information provided by genetic testing will not always be as accurate as expected.

Genetic testing may be for a condition that might never fully express itself as a disease, or express itself only in a reduced form of the disease.

The quality of genetic information, that is its predictive nature and its application extends beyond the individual to blood relatives are two of the fundamental distinctions that set it apart and provide a special case, setting it apart from other sensitive health information.

I introduced my Genetic Privacy and Non-Discrimination Bill in 1998, first and foremost to stimulate debate, highlight pressing concerns and provide policy initiatives to the Federal Government on an issue which had not been considered in any extensive capacity by the Federal Parliament: the appropriate use and protection of genetic information.

Existing regulation in Australia dealing with genetic privacy and non-discrimination relies on a number of Commonwealth, State and Territory legislative instruments, self-regulatory guidelines and the common law.