Embryo genetic testing to be allowed for nine conditions as MPs debate IVF changes

Genetic testing on embryos will be allowed for nine hereditary diseases, according to a protocol tabled in parliament by Health Minister Chris Fearne on Wednesday.

The protocol drawn up by the Embryo Protection Authority forms part of the amendments to the in-vitro fertilisation law that government is proposing. The parliamentary debate on the reforms started today.

Although the protocol has a defined list of conditions, it also allows the authority to consider adding others following discussions with patients seeking IVF treatment and the clinical team involved.

“For conditions, not already on the list, the EPA considers a number of factors, including 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 PGTM testing,” the protocol says.

This gives the authority a measure of flexibility to increase the testable conditions without the need for legislative interventions at each turn.

Defective embryos will not be discarded but kept frozen in perpetuity.

Conditions approved by EPA for PGTM

• Finnish Nephrotic Syndrome
• Gangliosidosis
• Huntington Disease
• Joubert Syndrome
• Maple Syrup Urine Syndrome
• Nemaline Myopathy
• Spinal Muscular Atrophy
• Tay-Sachs Disease
• Walker-Warburg Syndrome

Read the proposed protocol regulating preimplantation genetic testing for monogenetic disorders (PGTM):

Opening the debate, Prime Minister Robert Abela said his government had an electoral mandate to change the law and allow science to offer a solution to couples with serious hereditary diseases who do not wish to transmit them to their children.

“We remain the strongest progressive force in this country because this is a government that does not close its eyes to anybody’s reality… We want to give people a chance to build their own families. This is a vote for love, for a more just country,” Abela said as he urged parliament to approve the changes by a strong vote.

Opposition against PGT

But the major change in the law that will allow genetic testing of embryos to prevent the transmission of hereditary conditions will not find the support of the Opposition.

Opposition health spokesperson Stephen Spiteri said the Nationalist Party parliamentary group cannot give its green light to PGT because it goes against the embryo’s right to life. He said the other amendments being proposed widened the chances for people to undergo IVF treatment and the Opposition will support them.

On PGT, Spiteri said that although some of the genetic disorders listed were terminal and would lead to the premature death of the child, others would still allow the child to live for long, even if with discomfort.

He cited as an example Huntington’s Disease: “Huntington’s reduces life expectancy, creates social, medical and psychological problems but there are people living with this condition and what do we tell them?”

In a pointed reply, Labour MP Malcolm Paul Agius Galea said in his profession as a doctor he has seen people who developed Huntington’s at a later stage in life when they already had children. “There is a 50-50 chance that this disease is transmitted to children and I know of people with a history of Huntington’s in their family who choose not to have children because of this,” he said, adding PGT will allow these people to have children without the risk of passing their children through martyrdom.

Embryo’s right to life

However, Spiteri insisted that the prospective parent’s wish to have a child had to be balanced with the embryo’s right to life. He described PGT as “invasive, selective and destructive”, adding that selecting “perfect” embryos at this stage would send the wrong message on equality.

“These selected embryos will remain frozen for ever… If we are making this choice at this vulnerable stage of life, aren’t we creating a problem of equality even at a later stage in life. We cannot separate the embryo’s right to life from the wishes of the prospective parents to have a child because someone will hurt and suffer,” Spiteri said, calling on lawmakers to protect life.

The Opposition spokesperson insisted that the law itself was called the Embryo Protection Act and genetic testing was “creating an ambiguous situation” for Opposition members.

He proposed the introduction of polar body testing (PBT) instead of PGT, which would allow eggs to be tested before fertilisation. However, he did admit that PBT had its limitations since it only tested for genetic diseases from the maternal side.

But Spiteri admitted that the PN today was viewing the changes enacted in 2018, which the party had opposed, in a positive light since they have led to improving the success rate. He called on the government side to reach a compromise, keeping in mind the ethical considerations being raised on PGT.

‘Country must no longer export the challenges couples face’

Earlier, the Prime Minister took to task a statement released by several pro-life organisations, including church organisations, last week in which they denounced PGT and compared it to eugenics. He said their statement was unjust and peddled misinformation.

“We are not introducing testing across the board or capriciously. Not everyone undergoing IVF will have access to PGT and the vast majority of cases will not be eligible. But it is useless saying we do not want to impose hardship on people unless we take the necessary decisions to ensure this does not happen,” Abela insisted.

He kicked off his speech by quoting from real life experiences of couples who lost their children after a few months or years because they suffered from debilitating genetic diseases. Abela said the proposed changes will try to offer families like these a better life.

“This government is committed to ensure that this country no longer exports the challenges these couples face because the scientific treatment available is not offered in Malta,” Abela said.

Nationalist MP Graziella Galea also participated in the debate, outlining her personal experience with IVF. She also disagreed with PGT, insisting that any woman undergoing IVF treatment would find it difficult to choose which embryo should continue to live and which should be frozen forever.

Parliamentary Secretary for Equality Rebecca Buttigieg said government’s proposals wanted to give prospective parents a choice to have children.

Other key changes being proposed:

• Increasing the eligible age for women to undergo IVF
• Increasing the number of cycles a woman will be able to undergo
• Allowing more eggs to be fertilised if this is medically recommended
• Giving authority more flexibility to decide on clinical matters without need to change law
• Allow frozen embryos abroad to be brought over to Malta
• Oocyte donation between people related through marriage will now be possible