28/08/02

Protecting Against Genetic Discrimination

Chief Human Rights Commissioner Rosslyn Noonan welcomed the release today of an Australian consultation paper* on the protection of human genetic information.

Ms Noonan said that the Australian Law Reform Commission (ALRC) and Australian Health Ethics Committee (AHEC) jointly produced paper highlighted the fundamental challenges to the realisation of human rights posed by the rapid development of genetic science.

“These challenges come from safely balancing the beneficial use of genetic information while still protecting people’s privacy, rights and interests. These are undoubtedly challenges that New Zealand also faces”.

Ms Noonan said that recommendations, which might be of interest in the New Zealand context, included proposals that:

- The grounds of unlawful discrimination should be extended to ensure they cover discrimination based on a person’s (real or perceived) genetic status.

- A national, independent body should be established to provide high-level advice to Government and industry about human genetics and to assist in developing new and/or compliant laws, guidelines and practices.

- The ethical oversight of all human genetic research should be strengthened.

- There should be new rules to govern the operation of human genetic databases.

- Employers should be prohibited from gathering and using genetic information except in very limited circumstances.

- It should be a criminal offence to submit a person’s sample for genetic testing, knowing that it is being done without the consent of the individual concerned or without lawful authority.

“The Commission has been monitoring both overseas and local developments relating to the use of human genetic information due to concern that human genetic testing introduces the possibility of discrimination as a result of genetic differences,” said Ms Noonan.

In November 2001 the Government referred the matter of human genetic discrimination to the Commission for further consideration as part of the development of a National Plan of Action for Protecting Human Rights, which the Commission has responsibility for.

Ms Noonan said that the Commission recognised the importance of issues arising from human genetic testing and was committed to encouraging, and participating in, a New Zealand dialogue on such issues.

*The consultation paper (www.alrc.gov.au) arises from a joint inquiry conducted by the ALRC and AHEC into potential privacy and discrimination issues surrounding human genetic samples and information. The final report of the inquiry is due for release on 31 March 2003.

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