The right to life and PGD

In Pre-implantation Genetic Testing embryos are tested for specific genetic mutations before implantation in IVF procedures. Photo: Shutterstock.com

Since Pre-implantation Genetic Testing (PGD) was introduced in assisted reproductive technology in the early 2000s, it has become a routine method for examining and rooting out genetic disorders in embryos in various countries.

In essence, this entails that,  before implantation in IVF procedures, embryos are tested for specific genetic mutations. Only embryos free of those disorders become eligible for transfer to the uterus with the possibility of being born. The list of traits it can be used for continues to grow as we speak, with most conditions being non-life-threatening.

Humans share a common desire to avoid suffering and it is no surprise that the use of PGD, which seeks to eliminate the existence of suffering before it is experienced, has become increasingly popular. Sweeping statements in favour of PGD for all genetic conditions, though, are reductionist and simplistic at best and dangerous at worst.

This is because the emergence of its use locally brings many ethical and social dilemmas related to disability that need to be recognised and discussed. For example, many disability activists and ethicists locally and internationally see PGD as nothing more than a tool for modern eugenics. Ultimately, this does entail selecting who should have a chance at life based on genetic makeup.

The direct results of using PGD are not only on the embryos who are never given the opportunity for life but has a broader implication on the way society perceives such genetic mutations, leading to a disvaluing of the people living with such conditions. Assigning the label of defectiveness and the qualification to elimination for a genetic condition is rooted in objective medical indications and suggests that all cases of such a condition manifest equally clinically and are experienced in the same way.

This does not consider or respect the diversity of the lived realities and experiences of persons with such conditions and their families. PGD also reinforces the paternalistic medical model of disability, where the healthcare professional makes decisions for a patient and sees disability as something to be simply cured, a model that many have been striving to reject in favour of a more social model which places importance on how society relates to disability.

Important questions need to be considered. With a language of abnormal and defective embryos, how will this affect perceptions and beliefs surrounding disabilities and influence parents’ decisions regarding testing and implantation? How informed are the decisions taken when a medical professional insists to parents that this is the right way to go?

We feel, thus, that a proper consultation process is needed involving activists, ethicists, patient groups and NGOs working in the disability sector. A sweeping statement in complete favour of PGD for all possible genetic mutations goes against the multiple voices of persons with disability and their parents.

Taking into consideration the voices of all stakeholders and the various implications of this technology will lead to a legislation with regulatory frameworks and safeguards that are more respectful of the value of human life and article 10 of the UN convention stating that “every human being has the inherent right to life”.

Marchita Mangiafico – president, National Parents Society of Persons with Disability (NPSPD), Santa Venera

Unnecessary bureaucracy

I sympathise with Godfrey Gauci Maistre (June 12) and my heart goes out to him. He’s a lawyer and he still got tied up in bureaucracy and non-sensical and potentially dangerous demands for personal data.

I’ll keep this short, but I’ve had similar experiences myself with BOV, the latest this week.  I sold a property and the buyer paid by bank draft – issued by BOV – and BOV wanted to see the deeds as proof of source! Any ass could see the source was BOV, which issued the draft.

Then, my appointment expired because I couldn’t get back from the hotel with the deed on time. Eventually, the girl took a photocopy of the deed etc., although, consequently, I ran out of time.

Two weeks later, I flew out again to finish the job and see if I could invest the money in Malta and transfer some back to the UK. Again, I was asked for the deeds. I said they took a copy of them on my last visit but they still insisted on seeing them. 

This time, I had anticipated the pathetic and unnecessary bureaucracy and I had brought them with me anyway. What happened to the copy of the deed taken only a week previously and what if I had relied on them having it at hand if still required?

One thing had changed:  I didn’t invest and I transferred all the money back to the UK; I couldn’t rely on the bank to carry out common-sense straightforward transactions anymore and had become quite worried about the safety of my proposed investments.

Paul Brincau – Uxbridge, England

A ‘defective’ embryo

A new appliance which has just been bought is supposed to come without defects. Otherwise, it is sent back to the seller for replacement or the money paid is refunded.

And, yet, those who drew up the amended Embryo Protection Act are expecting us to believe that infertile couples would adopt a ‘defective’ embryo. Who are they kidding?

Carmel Sciberras MD FRCS – Naxxar