Labour MP Romilda Zarb has defended the expansion of embryo screening for serious hereditary conditions against warnings from the disability sector, saying she does not see the opportunity it offers to parents and the rights of people with disabilities as competing positions.

In an interview with this newspaper, Zarb, the mother of a son with Down syndrome, was asked how she reconciles her support for IVF expansion with her advocacy for disability rights, after the Malta Federation of Organisations of Persons with Disability warned that extending pre-implantation genetic testing for monogenic disorders (PGT-M) to 17 additional conditions risks sending the message that some lives are more valuable than others.

"I don't see them as different," Zarb said. She framed PGT-M as an opportunity for parents who had been confronted with serious hereditary conditions and who had previously been denied it. She said she respected the federation and understood its concern, describing it as an effort to bring the voices of people with disability forward.

She stressed that PGT-M is offered only to people who are already going through IVF and who have serious hereditary conditions. It is not handed out freely, she said, and parents are given information, with the choice always remaining theirs. Some of those parents may already have been pregnant and lost a baby, she said, while others carry a genetic or hereditary condition and do not want to pass it on because they have seen at first-hand what it can mean. The list of conditions, she added, is not completely open.

Zarb said she would never go against the rights of people born with a disability. Therapies, benefits and forms of assistance would remain in place, she said, and every life carries the same dignity and deserves the same respect. As the parent of a child with Down syndrome, she said, if anyone suggested she change him, her answer would be no.

The subject is a painful one for her, she said, and she is hurt by some of the arguments raised in the debate, including those about the "perfect baby". She said she speaks about PGT-M because she knows some people would otherwise go abroad, and she would rather they did so in Malta, where they are safeguarded.

While respecting the federation's position, she said the progress being made could not be withheld from the families it affects. The two conversations should run in parallel, she said, with the aim of a fruitful outcome. Scientific progress and moral values should not be in conflict, she added, because the focus is on the person.

On the government's pledge, announced during the election campaign at an event at which she also spoke, to provide a €1,000 annual allowance for disabled persons aged 18 to 23 to cover therapy costs, Zarb rejected the suggestion that it is merely symbolic. She called it support. Whether it was enough, she said, was a different matter, because no matter how much is done in this sector it will never be enough. When the scheme began there was nothing, she said, and the amount has grown considerably over time. She added that people with disabilities also receive other benefits alongside the allowance.

Asked where Malta is still falling short, whether on housing, transport or employment, Zarb did not single out any of the three. She pointed instead to the personal autonomy reform, which came into force earlier this year and which she said gives people with disabilities the chance to take decisions for themselves and to be more included in society. That, she said, is where the work should now focus, and it is the change she most wants to see when it comes to human rights. She said parents tell her a great deal has been done and that they appreciate it.

She identified a further challenge where work-life balance and disability intersect. Parents who must fit their children's therapies around their jobs face one set of pressures, she said, while workers with disabilities who must attend their own therapies face another, and the government needs to push further on both.

Asked whether government services were enough, Zarb said they were not. Services have grown and the government has added to them, she said, but families always need something extra. She pointed to the development of Sapport and its programmes, as well as to job-coaching to help young people with disabilities enter the workforce and incentives to companies that employ them.

She distinguished between equality and equity. Inclusion, she said, means removing the obstacles that stand in people's way. Where Malta once spoke in terms of equality, it now needs to focus on equity, so that everyone is given the same opportunity and, if they meet a hurdle because of a disability, a way is found to remove it.

Zarb said she believes her strength in Parliament lies in being relatable as a mother of a child with a disability. She spoke about the fear parents experience when a child is born with a disability, describing it as a fear of the unknown. She said she wished someone had been able to show her, even for a split second, what life would look like two years later, as it would have made those two years much easier to navigate. The professionals who surround families, she said, become friends who point them in a direction that removes the fear.

She called for greater peer support for parents of children with disabilities. While some support is already available, including through the Down Syndrome Association, which allows parents to share their experiences, she said joining such groups can take time and that more support is needed.

She also cited free childcare as an example of policy aimed at work-life balance. Reading an online comment that childcare should not be free, she said, her immediate reaction was "no way": it was a Labour government that introduced it, she said, and kept it going at considerable cost.

Asked whether the government's record on minorities has been consistent, as she has framed IVF and the extension of adoption rights to same-sex couples as being about not leaving a minority invisible, Zarb said she saw a consistent thread. The government had always recognised minorities, she said, citing the extension of the medicines formulary, and where she saw shortcomings she tried to find a solution. Malta, she added, had also moved forward in areas such as LGBTQ+ rights.