Conversations with a friend…in IVF genetic testing

While the heat of our coffee radiated at our fingertips, we sat in a secluded corner of a frequented café with both of our laptops open, working on our latest project, both of us in deep thought.

When the air in the room became saturated with the aroma of roasted coffee beans and whirlpools of conversation mixed with the pattern on the surface of a coffee cup, many topics were discussed, especially in relation to work and studies.

But, someone did.

At the time of the conversation, the IVF genetic testing bill was under discussion in Parliament pending approval.

The bill was surrounded by controversy over the inclusion of genetic testing on fetuses to determine whether they will be born with the eight genetic conditions specified in the bill.

When reading for a master’s degree in Disability Studies, Lara Darmanin’s opinion on some matters certainly carries more weight than the opinion of the average speaking person than what they have read online.

A fruitful conversation about what it means to choose a genetic test for our future has begun between Darmanin and this author.

One of the first topics was certainly children who are born through the normal form of pregnancy when they have certain genetic disabilities.

As the “expert” on the subject, the question to ask Darmanin was instinctively what this meant for the children’s future. “My personal opinion is that once these eight conditions are named, there really is a certain amount of discrimination for people living with these conditions and those born with them because they haven’t been screened.”

There is a sense that this bill seeks to remove these eight genetic conditions from the dictionary and make them a problem of the past. Attard believes that if the choice of the moment were added to the equation, the term disability would certainly not be the choice that was made.

Darmanin fears that the future will become a future in which the stigma faced by people with disabilities will increase. “We are risking a future where the disability will become a burden on your shoulders because it was your choice to have a child with said disability. This will be further emphasized if genetic testing in IVF increases.”

Let’s take a specific scenario for a moment; One of the eight genetic conditions tested in an IVF fetus is Huntington’s disease. In Huntington’s case, parents can be tested before the IVF process begins to see if they can pass the disease on to their children.

This process is very different from doing IVF and testing embryos because the moment the embryos are tested there is an option to choose and that blurs the lines.

“It depends a lot on what a person thinks is the moment of conception or life. If we are choosing what life we ​​should carry on based on tests to show what conditions the baby will face then it is what does not suit me well,” Darmanin said.

Attard believes it is a fact that, the moment an option is added to the equation, no one will choose the hardest path and in no way is this an insulting statement to fathers and couples who choose not to have certain pregnancies due to a number of complications but at the end of the day all Parents want a healthy and right child.

What is certain is that the issue being discussed is not always an easy one but one has to bear in mind the implications of our future decisions.

“We live in a society where we constantly place ourselves in the ‘us’ and ‘them’ categories. This is more prevalent in Malta; we separate ourselves by political parties, saints during village holidays etc. We even create a scenario for us and an illusion when it comes to LGBTIQ situations , so the logical question should be… why do we create others and they are when it comes to the birth of children?” asked Attar.

“We have to realize that by choosing who is fit and who is not, we are leading to the topic of eugenics. Creating a society that removes certain conditions from existence is immoral, so who do we choose?” said Darmanin.

The thing is, from a young age, Attard remembers reading articles about how scientists can now determine what eye color a baby will have before he’s even born. “I am 100% sure that the world of science can indeed test for other disabilities that are not included in the bill, so where do we draw the line? Will ethics play a role in the decision to stop further testing?”

It is difficult to predict whether Malta will be added to the list of genetic tests. What is certain is that with the advancement of time and technology, this type of test will become cheaper and more accessible to all.

Another observation that both Attard and Darmanin agreed on is that the whole state of disability, in their opinion, is viewed from the wrong perspective. As with everything, there is more than one way to look at the solution.

Instead of viewing disability as a burden and looking to remove it as much as possible, why not make it easier for parents who have children with certain conditions.

“Yes, it is not easy to find yourself in a situation where your child suffers from a certain condition and the first thing many parents say when they find out that their child has the aforementioned condition unfortunately is what will happen to my child once it is gone?” said Darmanin.

This is a really sad realization that parents have to go through unfortunately, so instead of removing a child who has any condition, why not make it easier for parents and child to live a productive and meaningful life without anyone being a burden to anyone else.

“We must not become a society in which disability is a thing of the past; we must not become the new Hitler and create the perfect race, we must see the logical and moral solution to all this,” Attard said.

Society in general needs to become more inclusive. Some time ago, while interviewing former MP Oliver Chikluna, who was still a PWD commissioner at the time, he said that although there were laws and regulations in place for buildings to become accessible to everyone, they were still seen as a resource inconvenience to implement these regulations, Nor is it necessary for a more inclusive society.

“Sometimes we cannot accept the fact that there are people with different needs than ours. Yes, applicable laws and regulations aim to make society more inclusive, but do we genuinely need these laws and regulations to think about our peers? Without them, would we have a society that does not include these people? In the grand design of things?”

When the coffee was forgotten and our hostess started cleaning the table, Attard and Darmanen came to the same conclusion – we had to draw a clear and final line about what was and was not acceptable while driving away from eugenics. “We cannot create a society where disability is a term reserved for couples who choose to conceive naturally without the ‘guarantee’ of genetic testing.”

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