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NZORD welcomes report on Molecular Genetic Testing

Press statement - 19 December 2003

The National Health Committee's report to the Minister of Health on Molecular Genetic Testing, presented earlier this month, is welcomed as an important step in ensuring our medical system is well prepared to take advantage of new technologies and knowledge that will greatly benefit the health of all New Zealanders.

"There will be benefit to individuals and families affected by rare genetic disorders especially, if the committee's recommendations are fully implemented by the Ministry of Health", said John Forman, Executive Director of NZORD, the NZ Organisation for Rare Disorders, and a consumer/disability representative on the advisory group that helped prepare the report.

Rare disorders have often been the subject of delayed or imprecise diagnosis, with consequent problems in determining optimum treatment or management of the condition. This has led to a lot of added stress for families, compounded by uncertainties about inherited disorders occurring again in other children.

"The proposed criteria for evaluating new tests and laboratory competence to undertake them, plus the recommended improvement to clinical genetics services to meet international standards, are welcomed by NZORD as important steps towards better use of genetic knowledge in medical services, and better outcomes for patients and their families", said Mr Forman.

However these advances are not all about hi-tech and specialist services. Emphasis on GP education will help ensure appropriate use of the tests, and there are also very important recommendations about the ethical imperatives of informed consent and the safe and appropriate use of such tests. The recommendations include a process for involving consumer support and advocacy groups in developing protocols for new tests.

'The final recommendation about improving information on genetics for the public, is very significant from NZORD's perspective" said Mr Forman. "We believe this is an area of great potential that is neglected by current policy, and we look forward to working with the Ministry to improve genetic information resources".

The full report can be downloaded from the National Health Committee's publications website or click here to access the PDF directly.

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