New Zealand Organisation for Rare Disorders
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Phone: +64 4 471 2226
Charities Commission Registration CC22512
Screening criteria: the need to deal with new developments and ethical issues in newborn metabolic screening
NZORD took the lead in publishing how family interests and ethics must influence screening policy – October 2012
Over a decade of NZORD’s advocacy for patient and family interests in health policy has taught us many lessons. One major lesson has been the realisation that talking the language of officials and professionals is an important step in having our messages taken seriously. That’s why we partnered with other allies around the world to write an article on the need for newborn metabolic screening criteria to be adapted to take family interests into account more specifically, and to be more responsive to a variety of ethical issues.
We are proud to have the valued support of the Save Babies Through Screening Foundations in the USA and UK, and the Genetic Alliance in the USA, in the preparation of this article, along with valued help from two New Zealand academics with editing and technical aspects.
The article is published online in the Journal of Community Genetics, October 2012. We propose that decision criteria for metabolic screening in the newborn period should be adapted to specifically include parent and family interests, community values, patients’ rights, duties of government and healthcare providers, and ethical arguments for action in the face of uncertainty. Here is an open access PDF version of the article.