The government is open to allowing doctors to test IVF embryos for more rare genetic diseases if science develops adequate testing for them, according to Health Minister Chris Fearne.

So far, the new IVF law lists nine rare genetic diseases that doctors would be allowed to test for if the parents are willing.

But the government would also consider testing for other rare diseases that have not been listed yet, Fearne said, adding this possibility was already catered for in the IVF protocol.

This, he said, would depend on “how serious the condition is, the likelihood of it being inherited and the testimony of people affected by the condition before deciding whether to approve it for [pre-genetic] testing”.

Speaking with PN health spokesperson Stephen Spiteri during a debate organised by Times of Malta, Fearne said that the nine listed conditions cover 95 to 98 per cent of all monogenic diseases in Malta. Monogenic means related to or controlled by a single gene.

However, there are other diseases, which occur once every 20 years, for instance, that are not listed. Pre-genetic testing could also be approved for them by a board specially appointed for the purpose.

“We’re speaking about the rarest conditions. But we couldn’t list all the rare diseases, because there are thousands of them,” Fearne said.

“Some of them we already know are monogenic and science may eventually discover that some others are as well. In that case, we are not closing any doors. But it will not be the doctors’ and neither the parents’ decision to test for them, but a specially appointed scientific board.”

When asked whether he would also consider testing for other rare diseases, such as ALS, Fearne said that is a different story, “but one can think about it as well”.

Embryo testing for pregnant women

He also specified that while embryo testing is also available for parents who are already pregnant, this law does not allow for that.

Fearne firmly refused to say whether the government would consider allowing it in the future and insisted that the current discussion is about a very different law.

Parliament started debating amendments to the 2018 IVF law three weeks ago, with the changes expected to be the first major piece of legislation introduced since the March general election.

The bill is due to be given a third reading and signed into law next week.

The government wants people to be eligible for IVF up to the age of 45 (rather than 42), offer more IVF cycles free of charge, extend IVF to those who already have a child and facilitate egg donations and transfer of embryos from other countries.

But most controversially, it wants to allow doctors to perform genetic tests on IVF embryos before they are planted into the womb. The tests would be for nine rare, genetic conditions, such as Huntington’s Disease, that the baby might carry and develop when it is born.

The Church in Malta and Gozo (save for one priest, Fr Colin Apap) and more than a dozen other organisations have come out against the law, criticising it as an exercise in the selection of who gets to be born and who does not. Some argue it is an insult to persons with disability and that its wording paves the way to test for other kinds of disabilities in the future.

But a number of other organisations have come out in favour of the law, saying it will only reduce immeasurable suffering to young babies and their parents and help the creation of healthy lives.

The Nationalist Party had started out sending signals that it is against pre-genetic testing and gave the impression it would vote against the law but has changed its stance. It insists though that testing should happen primarily on female eggs and embryo testing must only be conducted in exceptional cases.

“We are in favour of helping struggling parents have healthy babies, but we want to dive deeper in the solutions that exist and that could be employed before the egg and the sperm are fertilised into an embryo,” Spiteri explained during the debate.

He said that a branch of polar body testing, which runs the same genetic testing on the female eggs only, detects eight-and-a-half out of those nine conditions.

“With the exception of Huntington’s Disease coming from the father’s side, we are able to test for all those conditions on the female egg, before fertilisation, without having to unnecessarily create many frozen embryos and stockpile them.

“Therefore, we believe the embryo should only be tested in exceptional cases where the disease cannot be detected at an earlier stage.”

A pro-life law

Fearne said the current protocol tabled in parliament already allows for polar body testing, allowing the doctors and the parents to choose what method of testing they prefer to go for.

During the debate, Fearne insisted that this is a pro-life law, because it will help generate healthy lives.

While Spiteri agreed with him on most of the issues, he pointed out that the embryos found to have the defective gene will likely not be adopted.

Fearne disagreed, saying that if science eventually finds a cure for these conditions, as it did with other rare conditions, then these embryos would have a chance at a normal life in the future.