Privacy and Genetics

NSWCCL is very concerned about the lack of adequate measures relating to protecting individual privacy regarding genetic testing and collected information. We are totally opposed to the forced removal of genetic information from anyone not charged with the crime requiring testing. There are a host of other important issues. Please peruse the links opposite and write to lobby your local federal and state members.

We urge you to write to your local member at both a federal and state level, declaring your concern and demand they act to legislate to protect privacy.

Find your federal member and email or fax them a letter through the Commonwealth parliament website Parliament of Australia.

Find your state member and email or fax them a letter through the NSW parliament website NSW Parliament.

For sample letters and assistance with letter writing see Amnesty International's site.

Email NSWCCL with your comments

Related Links: Legislation

• Privacy Act 1988 (Commonwealth)
• Genetic Privacy And Non-Discrimination Bill 1998 (Commonwealth)
• Privacy Amendment (Private Sector) Bill 2000 (Commonwealth)
• Privacy And Personal Information Protection Act 1998 (NSW)
• Privacy And Personal Information Protection (Transitional) Regulation 1999 (NSW)
• Privacy And Personal Information Protection Regulation 2000 (NSW)

Related Links: Articles

• Science and The Citizen: Pink Slip in Your Genes by Diane Martindale, Scientific American January 2001)
• Genetic Non-Discrimination, Privacy and Property Rights by Mathew Stulic, E Law - Murdoch University Electronic Journal of Law, Vol 7, No 2 (June 2000)
• A new era for public sector privacy in NSW [1999] PLPR 3; (1999) 5 PLPR 130
• Protection of personal information by law in Australia: 11 years after the passage of the Federal Privacy Act [1999] PLPR 55; (1999) 6 PLPR 61
• Privacy protection, a new beginning: OECD principles 20 years on [1999] PLPR 41; (1999) 6 PLPR 25
• Genetic privacy: a predisposition to inconsistency,Dr Charles Lawson 1999
• Iceland's Genetic Jackpot by Kristen Philipkoski Dec. 10, 1999
• The Australian Health Ethics Committee (AHEC), a Principal Committee of the NHMRC on Cloning of Human Beings & Genetics
• Scientific, Ethical and Regulatory Considerations Relevant to Cloning of Human Beings NHMRC 1998
• Statement on the Principled Conduct of Genetics Research H.U.G.O. Ethical, Legal, and Social Issues Committee Report
• Control And Access H.U.G.O. Ethics Committee Statement On DNA Sampling

Related Links: Newspapers and TV

• Insurance firm admits using genetic screening By Melissa Kite, Political Correspondent Thursday February 08 2001
• Australian Law Reform Commission & Australian Health Ethics Committee Media Release 7 February 2001
• Life beyond 2001 Sir Arthur C. Clarke, author of the visionary 2001: A Space Odyssey, has a new forecast for the coming century, SMH 21 December 2000
• Government inquiry to examine genetic testing privacy issues 7:30 Report, 9^th August 2000
• Flying blind into the genetic age by Jeremy Rifkin, Tuesday 25 July 2000

Related Links: General Genetic & Privacy Links

• Report on Human Gene Therapy by Mr Harold EDGAR and Mr Thomas TURSZ, UNESCO
• CSIRO genetic information for community.
• Parliament of Australia Senate Committees genetic privacy bill
• Genetic Privacy Frontpage (full of useful resources and hard hitting)
• Privacy.org site for news information and action