Call for public dialogue on genetic testing
25 June 2002
Biotechnology Council calls for public dialogue on genetic testing
The rapidly developing ability of genetic testing technology to diagnose and predict the onset of diseases is posing strong ethical challenges, says Anne Dickinson, Chairperson of the Independent Biotechnology Advisory Council (IBAC).
“Genetic testing already provides a window into the present and future health of individuals and their families,” Mrs Dickinson says. “The impact of a genetic test reaches well beyond an individual. In the case of some hereditary diseases it can also reveal potentially life-changing information affecting the person’s siblings, children and parents.
“We as a New Zealand society need to think very carefully about how this information should be used, and what rules or ethical guidelines might be needed.”
She says the information from testing for certain genetic disorders can also have implications for family, colleagues, employers, insurers and others – as well as for the person tested.
“If a healthy person finds out that their genetic code means they are likely to develop a debilitating condition in the future, what right do others have to know this? What obligations should they have to share this knowledge? Are there uses of genetic testing which we don’t want to make available? What impact will genetic testing have on how we think about ourselves and others? These are the kinds of questions New Zealanders need to consider.”
To help inform and stimulate discussion on genetic testing, IBAC has just published an information booklet on the subject.
It describes the technology behind the testing, what it can do and where it is going. It also canvasses the ethical issues surrounding genetic testing. These are illustrated through a series of fictitious but typical scenarios facing New Zealanders who find their health might be affected because of their genetic makeup. Human rights questions associated with genetic testing are also raised.
Mrs Dickinson says that genetic testing technology for diagnosing or predicting individual health issues is developing rapidly. “Some mail-order kits are becoming available for people to carry out their own genetic tests for certain conditions, without medical advice or counselling. New Zealanders need to understand the implications of this kind of technology. We also need to ensure that our legislative framework is adequate to deal with these advances.”
About 10,000 copies of the booklet are being distributed to libraries, secondary schools, Maori organisations, medical practices and people who have previously expressed an interest in biotechnology issues.
Copies can be ordered through: IBAC PO Box 530, Wellington, Email: firstname.lastname@example.org, or the IBAC website: www.ibac.org.nz
The Independent Biotechnology Advisory Council was established in May 1999. Its membership includes a broad range of disciplines including ethicists, scientists and lay people.
The Council’s role is to stimulate dialogue and enhance public understanding of biotechnology, and to provide advice to Government on various aspects of biotechnology. IBAC will cease to operate in August 2002. Its role is to be taken over by the Bioethics Council/Toi te Taiao, which will be chaired by former Governor General and current IBAC member, Sir Paul Reeves.
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For further information contact:
Chair, Independent Biotechnology Advisory Council
Ph: 04-496-1743 or 027 242-9994
Member, Independent Biotechnology Advisory Council
Ph: 09-373-7599 ext 3768 or 025-810-737