Outline of the report
Essentially Yours: The Protection of Human Genetic Information in Australia (ALRC 96) is the product of a two-year inquiry by the Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee (AHEC) of the NHMRC, involving extensive research and widespread public consultation. The inquiry was the most comprehensive ever undertaken into these issues in Australia or overseas.
The report covers an extensive range of activities in which genetic information plays—or soon will play—an important role. The two-volume, 1200 page report makes 144 recommendations about how Australia should deal with the ethical, legal and social implications of the New Genetics.
The terms of reference directed the ALRC and AHEC to consider, with respect to human genetic information and the samples from which such information is derived, how best to:
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protect privacy;
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protect against unfair discrimination; and
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ensure the highest ethical standards in research and practice.
The experience of the inquiry, mirrored overseas, is that the rapid pace of scientific change has produced two powerful, but conflicting, social reactions. On the one hand, there is very strong public support for breakthroughs promising better medical diagnosis and treatments, and for assisting with law enforcement (including identification of missing or deceased persons). On the other hand, there are anxieties about loss of privacy and the potential for genetic discrimination, as well as about the capacity to regulate genetic science in the public interest.
The major challenge for the inquiry was to find a sensible path that meets twin goals: to foster innovation in genetic research and practice that serve humanitarian ends, and to reassure the community that such innovations will be subject to proper ethical, legal and other controls.
Comprehensive overviews of the report can be found in the Executive Summary, and in a series of Media Briefing Notes.