Inclusion Minister quotes woman who miscarried twice: ‘I want to give birth to a baby that lives’

A woman who miscarried twice made a heartfelt appeal for embryo genetic testing to be introduced so that she can give birth to a child that lives.

The appeal was read in parliament by Inclusion Minister Julia Farrugia Portelli as the debate on changes to the law regulating in-vitro fertilisation continued on Monday.

The minister said the woman had miscarried during the fourth month of her first pregnancy and after several attempts to conceive, lost another child at nine months.

The letter, which was tabled in parliament, concluded thus: ‘I had to give birth to a dead baby and this is why it is correct to have pre-implantation genetic testing because I want to give birth to a child that lives’.

Farrugia Portelli also quoted the experience of a couple she met during home visits that lost 10 children the moment they were born because of a serious genetic condition that impacted their brain.

“The country I love, we all love, had no solution for these families until today and this is a reality we are obliged to reflect on and take decisions that allow them to have children who can live,” Farrugia Portelli said.

The government has put forward amendments to widen accessibility to IVF and increase the chances of women getting pregnant.

Part of the reform includes the introduction of pre-implantation genetic testing for monogenic disorders in those cases where the couple have a family history of serious genetic diseases.

A protocol tabled in parliament alongside the legal changes, lists nine genetic diseases that can be tested for but allows the authority to put other disorders on the list after discussion between the patient, her clinicians and the authority.

The debate at Second Reading stage in parliament started last week.

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

PGT and disability

Farrugia Portelli referred to her portfolio and the criticism that has been levelled by certain quarters that PGT will create discrimination and send the wrong message about disability.

The Commission for the Rights of Persons with a Disability came out in favour of genetic testing but a majority of members of a council within the agency disassociated themselves from the stand in favour of PGT.

The minister said that the voices of people with a disability should not be ignored, quoting statements made by Gianluca Cutajar and Matthew Chetcuti, two disabled people who argued in favour of PGT.

Cutajar, a Labour politician, said he would want to make use of PGT to ensure that he does not pass on his hereditary genetic disorder to his future children.

READ ALSO: Labour politician opens up about disability, argues for PGT - 'I want a better future for my children'

“What inclusive country will this be if we do not give space to those persons with a disability who say they want to make use of PGT-M? I will vote in favour of this law because I am in favour of giving a voice to disabled person,” she said.

Farrugia Portelli took to task Archbishop Charles Scicluna, who asked what will happen to sick children when criticising the introduction of PGT.

“We will continue investing in helping children born with a disability or who are sick. We will continue supporting NGOs who work with these cases. We will not kill sick children,” Farrugia Portelli said.

READ ALSO: Church rallies doctors and academics against PGD testing of embryos

Michael Farrugia: ‘Immoral to deny solutions to people who need them’

Labour MP Michael Farrugia

Former minister Michael Farrugia, who had set on an ad-hoc parliamentary committee back in 2010 that discussed IVF and presented the government with recommendations, said it would be “immoral to have a solution provided by science and this is denied to the people who need it”.

Farrugia also took to task those who argued that the changes will give the Embryo Protection Authority too much space to decide on which genetic disorders can be tested for.

He quoted what Fr Peter Serracino Inglott had told a parliamentary committee in 2005 that the law must not be too restrictive that prevents change from happening quickly, especially in a field that is constantly evolving.

READ ALSO: Blog | PN MPs must reflect on Fr Peter’s words before rushing to denounce PGT

Farrugia noted how the Nationalist Party had changed its mind on the 2018 IVF amendments, which it had opposed back then. He urged MPs to be sensitive to people’s suffering and be part of this progress.

“Let us not be like those who voted against the IVF changes in 2018 but now have seen the light of day. By the time the Opposition changed its mind so many babies were born by IVF,” he said.

Farrugia said government is giving families with a history of serious genetic disease the opportunity, if they so wish, to break the cycle of pain.

Elderly Minister Jo-Etienne Abela rebutted remarks made by Opposition spokesperson Stephen Spiteri last week on the effectiveness of PGT.

“This is a test that is 97% correct unlike what has been said last week by the Opposition and defective embryos will remain frozen,” he said.

Glenn Bedingfield: ‘Be part of change’

Labour MP Glenn Bedingfield

Government backbencher Glenn Bedingfield noted the dearth of speakers from the Opposition on the IVF Bill. So far, Stephen Spiteri and Graziella Galea are the only ones to have spoken from the Opposition benches in the opening session.

Bedingfield urged the Opposition to be part of this progressive change. “Every change this country has done, whether it’s divorce, the introduction of rights for LGBTIQ+ persons or IVF, this side of the House has always been alone,” he said.

Other speakers for the government side were Home Affairs Minister Byron Camilleri and Romilda Zarb Baldacchino.

Today’s debate on the IVF amendments was only addressed by government MPs with Nationalist Party Whip Robert Cutajar telling MaltaToday he does not exclude the Opposition will have more speakers in other sessions.

Tho Opposition is supporting most of the amendments but is against PGT, insisting that it goes against the embryo's right to life.

READ ALSO: ‘My only dogma is science and biology’ | Stephen Spiteri