Conversations with a friend… on IVF genetic testing

As the heat of our coffee radiated into our fingertips, we sat in a secluded corner of a frequented coffee shop both with our laptops open, working on our most recent project, both of us deep in thought.

As the air in the room became saturated with the smell of roasted coffee beans and the swirls of conversation mixed with the pattern on the surface of the coffee cup, many a topic was discussed, mainly concerning work and studies.

But, one stood out.

At the time of the conversation, the Bill for IVF genetic testing was being discussed in Parliament waiting for approval.

The Bill has been shrouded with controversy over the inclusion of genetic testing on embryos to determine whether they would be born with eight genetic conditions as determined in the Bill.

Reading for a Master’s in Disability Studies, Lara Darmanin’s opinion on certain matters definitely carries more weight than that of the average person speaking from what he or she has read on the internet.

A fruitful conversation into what the choice for genetic testing means for our future started between Darmanin and this author.

One of the first topics was definitely the higher risk children born through the natural form of conception carry when having certain genetic disabilities.

As the “expert” on the subject, instinctively the question to ask Darmanin was what this means for the future of children. “My personal opinion is that once we have named these eight conditions, there already is a certain amount of discrimination for people who live with these conditions and were born with them because they weren’t screened.”

There is a bit of a feeling that this Bill seeks to remove these eight genetic conditions from the dictionary and make them a problem of the past. The moment choice is added to the equation, the term disability will definitely not be the choice taken, Attard believes.

Darmanin fears that the future will become one in which the stigma faced by people with disabilities will only increase. “We are risking a future where disability will become your own burden because it was your choice to have a child with the said disability. This will be more emphasised if the genetic tests in the IVF are increased.”

Let’s for a moment take a specific scenario; one of the eight genetic conditions tested for in IVF embryo’s is Huntington's disease. In Huntington’s case, parents can be tested before the IVF process begins in order to see if they can pass on the disease to their children or not.

This process is totally different than going through the IVF process and testing the embryos because the moment you test the embryos there is the option of choice and this is what blurs the lines.

“It depends a lot on what a person believes to be the moment of conception or life. If we are choosing which life to carry based on tests to show which conditions the baby will have is what doesn’t sit well with me,” Darmanin said.

Attard believes to be truth in that, the moment choice is added to the equation, no one is going to choose the harder path and in no way, shape or form is this a derogatory statement to parents and couples who choose not to carry certain pregnancies because of a number of complications but at the end of the day all parents want a healthy child and rightly so.

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

“We live in a society where we are constantly putting ourselves in the ‘us’ and ‘them’ categories. In Malta this is even more prevalent; we segregate ourselves according to political parties, saints during village feasts and so on. We even create an us and them scenario when it comes to LGBTIQ situations so the logical question has to be … why create another us and them when it comes to child birth?” Attard asked.

“We have to realise that by choosing who is fit and who is not we are leading into the topic of eugenics. Creating a society which is removing certain conditions from existence is unethical, who are we to choose?” Darmanin said.

The thing is, from a young age Attard remembers reading articles about how now scientists can determine what eye colour a child will have before being born. “I am 100% sure that the world of science can already test for other disabilities which are not included in the Bill so where do we draw the line? And will morality play a part in the decision of stopping further tests?”

It is hard to predict whether Malta will add to the list of genetic testing. What is for certain is that as time and technology progress, this form of testing will become cheaper and more accessible to everyone.

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

Rather than seeing disability as a burden and looking to remove it as much as possible, why not make it easier on parents who have children with certain conditions.

Darmanin said that “yes, it’s not easy finding yourself in a situation where your child has a certain condition and the first thing many parents say when they find out their child has the said condition unfortunately is what will happen to my child once I’m gone?”

That is a truly sad realisation which parents have to go through unfortunately, so rather than removing the child who has any condition, why don’t we make it easier for both parents and child to live a fruitful and meaningful life without anyone being a burden on anyone else.

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

Society in general does need to become more inclusive. Some time ago, while interviewing ex-MP Oliver Scicluna, who was still the commissioner for persons with disability at the time, he had said that although there are laws and regulations in place for buildings to become accessible for everyone, it is still seen as a nuisance to implement such regulations, rather than a necessity for a more inclusive society.

“We sometimes cannot accept the fact that there are people with needs that are different to ours. Yes, the laws and regulations in place are aimed at making society more inclusive but do we honestly need these laws and regulations to think of our peers? Without them would we have a society which does not include these people in the grand design of things?”

As the coffee was forgotten and our attendant started to clean up the table, Attard and Darmanin came to the same conclusion – we have to draw a clear and definitive line on what is acceptable and what is not while steering far away from eugenics. “We cannot create a society where disability is a term reserved for couples who choose to conceive naturally without the ‘safeguard’ which is genetic testing.”