Malta’s new IVF law will introduce the concept of PGT-M, allowing prospective parents to screen their embryos prior to implantation.

While the likes of the UK utilise this same technology to scan embryos for hundreds of conditions, including Down’s Syndrome, cystic fibrosis and Early-Onset Alzheimer’s Disease, Malta will limit it to nine serious monogenic disorders, including gangliosidosis and Huntington’s Disease

“We chose these nine diseases because of what they mean and the consequences of the diagnosis. The UK is a completely different scenario and we must adapt the laws to the local scenario, with strict regulation on how PGT-M will move forward.”

“We’re talking about nine strict diseases which have been outlined and highlighted through discussions with consultants, medical professionals, the Embryo Protection Authority, people who have worked in the field, as well as parents who have been through this trauma,” she said.

“We’re talking about Huntington’s, Tay-Sachs Disease, and gangliosodisis. If you are born with these conditions, the baby could, unfortunately, lose their life within the first few months they are born.”

“It is so traumatic to their quality of life and that of their parents. I haven’t been through it myself but I’ve spoken to many families who have and just listening to it is heartbreaking, let alone actually going through it.”

“Science allows us to give these people the chance to have a healthy baby and not pass on this genetic disease to future generations.”

As for Huntington’s, when the gene can develop later on in life, Buttigieg warned that the disease severely degrades people’s quality of life.

“People who have had Huntington’s say they are faced with a choice, either have kids with the knowledge that there’s a 50-50 chance they can pass on the gene or not procreate. At this point in time, the science is available and has given many couples around the world the chance to have a child without passing on their genetic disease.”

Questioned as to whether conditions like cystic fibrosis could eventually make their way onto the list of conditions testable by PGT-M, Buttigieg argued that, unlike the nine conditions on the list, there exists an effective treatment for cystic fibrosis.

Asked whether people born with the condition may have rather been born about it, the parliamentary secretary responded that “these things happen” and that “no one is perfect”.

“We all wish we were born in a different way but we aren’t after perfection and that’s the main message, we’re making sure we are providing a quality of life to these families and giving them a chance to be parents to a healthy child. The science is available so let’s help them have the family they want and deserve.”

If the bill passes into law, prospective parents who wish to add new conditions to the list will have to ask a licensed PGT-M clinic to apply to the Embryo Protection Authority on their behalf.

The bill has proven to be controversial, with the Opposition pledging to vote against it on the grounds that it involves the selection of embryos.

A group of organisations that work with people with disabilities, including Dar tal-Providenza and Caritas, have come out against the bill, warning it breaches the right to life as enshrined in the Universal Declaration of Human Rights.

However, the Commission for the Rights of Persons with Disability has come out in favour of it.

“People who live in perpetual fear of passing on a disorder that hinders a meaningful and fulfilling life, fall squarely within this definition. Their ability to enter intimate relations, procreating or founding a family are heavily impeded, both by the probability of passing on the disorder as well as by the associated stigma,” the CRPD said yesterday.

Do you agree with this bll?