Essentially Whose Genes

Abstract

The race to map the human genome is over. While this has the potential, in time, to transform medical research, diagnostics and therapeutics, the moral implications of genetic inquiry have dominated public discussion. Concerns relating to genetic privacy and property, in areas as diverse as health care, medical research, employment, insurance, law enforcement and sport, have become a matter of increasing public and professional debate. In an attempt to deal with these issues, the Australian Law Reform Commission (ALRC) was asked to conduct an inquiry into the protection of human genetic information. In May 2003, the commission released the report Essentially Yours: The Protection of Human Genetic Information in Australia. This was the product of a two-year inquiry by the ALRC and the Australian Health Ethics Committee (AHEC) of the National Health and Medical Research Council (NHMRC). The title of the document suggests that the subject would be of great significance to the public, a view reinforced in a media release, which hailed ALRC 96 a "landmark report into the protection of human genetic information". The inquiry generated 144 recommendations. Not surprisingly, given the title of the report, these emphasised protection of genetic privacy and property through, for example, establishment of a Human Genetics Commission of Australia, strengthening the roles of research ethics committees and the development of protective legislation including taws on information privacy, control of human tissue and prevention of discrimination. It is sometimes easier to grasp issues by creating a scenario. Imagine that a 50-year-old man has a colonoscopy and a bowel polyp is discovered. A biopsy is taken (tissue is removed) leading to a diagnosis of bowel cancer. The biopsy specimen is not discarded, but stored in a "tissue bank". Bowel cancer researchers subsequently seek access to this tissue to study the genetics of bowel cancer (comparing the genetic make-up of tumor cells with normal cells). Under present legislation, the man does not need to be asked if his tissue can be stored or used in this way, and it is possible that his genetic information may get into the hands of other health-care workers, employers or insurance companies. If adopted, the inquiry's recommendations would attempt to ensure that full and informed consent is obtained for both storage and research, and that the man's genetic privacy is protected. An examination of the history of genetics demonstrates that exploitation and breath of privacy are real possibilities and that protective measures are necessary. In develop-ing its recommendations, the inquiry responded to specific terms of reference that included consideration of whether and to what extent a regulatory framework was needed to protect the privacy of samples and information and to provide protection from inappropriate discriminatory use of them. The recommendations are clearly aimed at meeting these challenges and, to a large extent, they succeed. Upon closer examination, however, there is reason to suspect that, from a philosophical perspective, the inquiry did not reach its potential or realise the claim in its executive summary to be "the most comprehensive consideration of the ethical, legal and social implications of the 'New Genetics' ever undertaken". This paper critically examines the philosophical basis of the inquiry and the manner in which it carried out its ethical deliberations on the status of genetic information.