Essentially whose? Genetic testing and the ownership of genetic information

In March 2003, following extensive public consultation, the Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee (AHEC) produced their final report entitled: Essentially Yours: The Protection of Human Genetic Information in Australia (ALRC-AHEC, 2003). The Commission made many recommendations according to the main theme encapsulated in the title that clearly preserve the right of individuals to ownership of their own genetic information. In doing so, the Commission endorsed the universal application of the broad ethical values of 'protecting the integrity of the person, human dignity, autonomy and the individual’s right to consent' to all forms of genetic testing, including paternity testing. However, they also acknowledge that the information revealed through genetic testing not only applies to individuals but also has implications for families, kinship, and racial groupings and for populations. Each of these sociobiological groupings comprises individuals with distinct and often conflicting rights and interests. This chapter provides an overview of the broader legal, ethical, and social issues associated with genetic testing, specifically in relation to the ownership of the information revealed. It outlines individual, group, and collective investments in the knowledge that genetic testing reveals, arguing that genetic information, except perhaps in the context of forensic profiling, is never entirely individual information. It then takes paternity testing as a specific but exceptional case of genetic testing that illustrates the complexities involved in applying existing ethical and legal frameworks to genetic information about the primary relationship between father and child. The popularly canvassed notion of mandatory paternity testing at birth is examined as an example of the collision of individual, family, and collective interests