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Pre-conception screening trial for rare and debilitating birth disorders

My compliance guru, Rob Dowler, has brought to my attention the need for more pre-conception genetic testing.Genetic testing articles in conjunction with the subject of insurance are usually raised in the context of underwriting discussions. Unless you are aware of genetic disorders in your family, you may not realise what all the fuss is about. Like all new technologies, genetic tests can have positive and negative effects. The negative effects tend to get the news coverage. But genetic tests can help prospective parents understand their risk of conceiving a child that will die during its first year of life. Saving that pain, trauma, the loss of life, and the expense (for all concerned, but including taxpayers) is all worthwhile. So worthwhile, in fact, that Australia has adopted a plan to put in place large scale pre-conception genetic testing.

For those interested in the subject, I commend to you these brief notes and some links, and I promise I shall follow this up with more coverage soon, from Rob Dowler:

"Referring to the recent budget announcement in Australia to fund a pre-conception screening trial for rare and debilitating birth disorders, I wrote to the NZ Minister of Health on 11 November 2018 asking the NZ government to consider investigating the introduction of a similar programme within New Zealand, whether independent of or alongside the Australian trial.

More detail on the Australian announcement can be found on a website set up by the Casella family at this link.

My interest in this topic is similarly personal to that of the Australian couple, Rachael and Jonny Casella, who campaigned for the pre-conception screening programme to be introduced there, albeit I am one step removed from their status as parents at the level of grandparent.

I requested that the New Zealand government similarly consider:
• a genetic carrier test to become routine in New Zealand and be subsidised by the Government. This testing would be offered to all prospective parents. If parents decided to have the test, it would provide them with information about any recessive genetic disorder that they might carry and whether they were at risk of having a genetic disorder, as well as other information such as whether there is a treatment, etc.;
• awareness to be raised about genetic testing amongst medical professionals as well as the wider New Zealand public; and
• the Government to subsidise IVF and pre-implantation genetic diagnosis (PGD) for those prospective parents who needed it for genetic reasons."


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