We can now consider having children, says Maltese author with rare disease after genetic testing law

Leading Maltese author Lara Calleja has vigorously defended the new genetic testing law, saying it allows people like her with chronic hereditary conditions to give birth to their own children.

“People like me who have chronic hereditary diseases can now consider having children thanks to these tests, which are the norm in civilized countries,” said Calleja, winner of the European Prize for Literature 2021, on social media. .

“No, I don’t want to have children with my condition. I love myself and I accept myself, but in no universe would I ever say that I would like to become like that.

“Life is hard enough as it is and I don’t want my children to leave with such a disadvantage. No matter how much love and respect I received, it was a trauma and I still carry the consequences to this day. Why put another human life through this misery when it can be avoided?

“Certainly not. What’s the point? Because a few people applaud a fertilized egg that hasn’t even been implanted in a uterus. Please grow up, these arguments that we shouldn’t be ‘gaming with life’ are the same arguments that were made when IVF was introduced.”

“Do you know how many children have been born through IVF since?”

Calleja suffers from congenital myasthenia gravis, a rare neuromuscular disease that has resulted in weaknesses in his facial features and arms. Although it is not one of the nine conditions that can be tested under Malta’s new IVF law, she believes it should be added to the list.

“It’s a rare disease with little research on the subject and it varies depending on the mutation,” she told Lovin Malta. ” I do not think so [the list of testable conditions] should be limited to a few conditions.

Asked about the length of the list, Calleja said while she wasn’t equipped to comment on it, she thought everyone should have the opportunity.

“I’m sure it’s costly for the government, but it’s also costly for the government to pay for all the drugs and treatment that people with disabilities have to take against their will,” she said.

Calleja urged people not to ‘romanticise’ disabilities, calling out one particular priest who is taking part in a radio advertising campaign on Church media station 103 Malta’s Heart against the new PGT-M law and using the logic that “people with disabilities are people too and Jesus taught us to accept everyone”.

These kinds of statements are so wrong on so many levels and I’m happy to explain why,” she said.

Critics of the law have warned that the concept of genetic testing has similarities to eugenics because it allows people to “choose who should live and who should die”.

However, Calleja warned that comparing PGT-M to eugenics is an “extreme argument that deviates completely from the current argument.”

Do we talk about being kind but give our house to the poor? No, but kindness can still be practiced,” she said. “It’s about balance and approaching every argument through that rational balance. Come on, eugenics is about killing real people because of their vulnerabilities.

“All individuals, regardless of size, age, color or whatever, have the same right to live with dignity and rights once they are alive. We are all guarantors of this, and whoever who has no problem.

As for the argument that genetic testing could change society’s perspective on people with disabilities, Calleja said there are counter-arguments for everything, but “these practices are so basic in places like the Scandinavia that it’s not even an argument”.

“If you have an educated culture, then you have an overall rational and accepting nation, unrelated to differences,” she said.

Do you agree with the new law on genetic testing?

Lola R. McClure