Introduction

7.1 The Terms of Reference require the Inquiry to report on whether, and to what extent, a regulatory framework is required to protect the privacy of human genetic samples and information. Privacy is a concept capable of many meanings.

Privacy has been variously described as the right to be let alone, the right to personal space or autonomy, the right of people to exercise control over their personal information or the degree of interference with their personal life, a popular reaction to the spread of new technologies or, more recently, simply fair information practices.^[1]

7.2 There are increasingly few zones of privacy to be found in modern life. High density urbanisation means people have less space of their own. Surveillance cameras in public areas, shops and even in the workplace are increasingly common for security reasons.^[2] Computers can track every movement and transaction, and facilitate cross-matching of information from disparate databases, and can directly monitor the activity of users (through ‘cookies’ and other means). Popular culture, especially as portrayed on television and on the Internet, is full of so-called ‘reality programming’ based upon intensive video surveillance of the sort that was first suggested—with horror, rather than fascination—in George Orwell’s classic novel 1984. The heightened desire for border security has also encouraged the development of biometric technologies to track individuals as they move from one country to another.^[3]

7.3 There is a very low rate of genetic variation among humans—99.9% of the human genome is identical. When we talk about ‘genetic privacy’ we are referring to only that very tiny part of the human genome that is unique to each individual, the single nucleotide polymorphisms that occur once in roughly 1,300 bases in each individual’s genetic code. In what has arguably become—with little public resistance in some areas, and strong encouragement in others—a ‘surveillance society’, there is genuine community concern about protecting the privacy of genetic information.

7.4 Importantly for the purposes of this Inquiry, the privacy of human genetic information is one aspect of the broader concept of information privacy. Information privacy can be defined as the right of individuals to control the collection, use and disclosure of information relating to them (personal information).

7.5 The High Court has confirmed that there is no enforceable general right to privacy in Australian common law and, in particular, there is no tort of invasion of privacy.^[4] With certain exceptions, such as where duties of confidentiality are breached, enforcement of rights to privacy must be based on statute, including information and health privacy legislation.