The privilege of not opting for PGT: an open letter to MPs

Hon. Members of Parliament,

The Genetic and Genomic Counselling Association of Malta (GGCAM), whose purpose is to promote the genetic counselling profession, educate and engage in patient advocacy for genetic conditions, supports the beginning of discussions around pre-implantation genetic testing for monogenic disorders (PGTM). Based on our expertise and experience with PGTM, we implore for the discussion to happen with the following considerations in mind.

Consider your use of language, prioritizing empathy over impact 

Having trained in genetic services throughout the UK, we have had the opportunity to counsel individuals and couples considering use of PGTM, and we can say that people do not opt for it capriciously, this is often a thoroughly painful and stressful time for couples. People may opt for PGTM because they have personally experienced or witnessed the negative effects of genetic conditions, the pain of watching themselves or a loved one deteriorate prematurely, the inconsolable heartbreak of losing a child, and the grief that follows, which is at times pathological.

Bear in mind that you are privileged if these scenarios are unfamiliar to you.

Think about the words you use when discussing such a sensitive topic.  For those of you advocating for PGTM, do it without hurting those living with such conditions. And keep in mind that legislating for PGTM does not mean that everyone qualifying for it must opt for it.  For those of you arguing against, do it without hurting those who genuinely would not consider bringing into the world a child with such conditions.

Consider your role in society, and the importance of the correct information being shared among colleagues and the public

The core competency of a genetic counsellor is to explain the intricacies of clinical genetics to patients in our profession, as a result we know that it is not always easy to explain such a complex and potentially sensitive subject to people with varying levels of scientific knowledge. It is easy for information such as this to be misconstrued, and it would be unfortunate if politicians were to take advantage of this to make a point.

As genetic counsellors we will always advocate to shift away from a paternalistic approach to medicine, and progress onto patient-centred, evidence-based practice geared towards a shared decision-making model. This bill will only be beneficial if it allows potential users of the PGTM service to make an informed and supported choice, regardless of their final decision.

Therefore, we implore you to first of all educate yourselves on the topic, ask questions, and liaise with all experts in the field. The arguments you use in Parliament will be heard and quoted by many, so use this as an opportunity to spread facts, not misinformation.

Seize the opportunity

Malta is not the first country to be going through this process, so let us not try to reinvent the wheel, and instead build on European and internationally approved guidelines. We are pleased that the draft protocol for PGTM which you are discussing takes into consideration the importance of genetic counselling for individuals and couples considering PGTM.

We are specifically trained to help patients adapt to the clinical, psychological, and familial implications of their genetic status while also acting as their patient advocates, ensuring that they are empowered and can make their own informed decisions. This service cannot, and should not be presented in a vacuum, but must be approached in the wider context of increased and equitable access to genetic counselling for all patients in Malta who would benefit from such a service.

Regardless of the importance placed on the genetic counselling service within the proposed protocol, those of us working locally have experienced delays of over two years in ensuring correct registration and ensuring protection and regulation of their title. The enhancement of the genetic counselling service must happen in parallel to any implementation of new genetic services to ensure that patients are served in the best possible way.

Donna Darmanin, Claire Grima, Glorianne Micallef, Roberta Rizzo, Loredana Vassallo, Christopher Vella

GGCAM (VO 1831) is made up of genetic counsellors working in Malta and the UK.  We are reachable by email on [email protected]