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Essentially Yours: The Protection of Human Genetic Information in Australia (ALRC 96)

The joint inquiry into the protection of human genetic information by the Australian Law Reform Commission and the Australian Health Ethics Committee (AHEC) (a principal committee of the National Health and Medical Research Council) began in February 2001.

The release in November 2001 of the inquiry's Issues Paper—Protection of Human Genetic Information (IP 26)—signalled the start of extensive national consultations, which included public meetings in every State and Territory capital, as well as in several regional centres.

The release of a Discussion Paper of the same name (DP 66) followed in August 2002.

The final report—Essentially Yours: The Protection of Human Genetic Information in Australia (ALRC 96)—was tabled in federal Parliament in May 2003.

The Australian Government released a government response to ALRC 96 in December 2005. A number of the recommendations have been implemented.

Media Releases relating to this inquiry:

• Australia 'well placed' to lead world in protecting human genetic information (9 December 2005)

• Praise for ALRC report at World Genetics Congress (14 July 2003)

• Inquiry: Time now to regulate the 'New Genetics' in the public interest (29 May 2003)

• Major upgrade proposed for safeguards on human genetic research and clinical practice (28 August 2002)

• Business needs control, policies to guide use of genetic testing and information in employment and insurance -Inquiry (28 August 2002)

• Human genetics revolution - safeguards require major upgrade (28 August 2002)

• Hands Off My Genes! (10 July 2002)

• More time for national genetic inquiry (30 January 2002)

• Safeguards needed for use of human genetic information (14 November 2001)

• Protection of human genetic information (Issues Paper 26) (14 November 2001)

• Public consultation a priority on genetic information inquiry (7 February 2001)

2003 media briefing notes

• ALRC 96 — Essentially Yours; The Protection of Human Genetic Information in Australia (29 May 2003)
  - Ethics, Privacy and Discrimination (Refer Vol 1, Part B)
  - Medical Research and Practice (Refer Vol 1, Parts D, E &F)
  - Insurance (Refer Vol 2, Part G)
  - Employment (Refer Vol 2, Part H)
  - Kinship (refer Vol 2, Ch 35-37)
  - Law Enforcement (Refer Vol 2, Part J)

2002 Media briefing notes

• DP 66 - Protection of Human Genetic Information :
  1. Legal Issues (28 August 2002)
  2. Medical Research and Practice (28 August 2002)
  3. Employment (28 August 2002)
  4. Kinship (28 August 2002)
  5. Insurance (28 August 2002)
  6. Law Enforcement and Evidence (28 August 2002)

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This page was posted 15 July 2003 and updated 7 August 2007

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