Issue link: https://maltatoday.uberflip.com/i/1471185
maltatoday | SUNDAY • 19 JUNE 2022 12 OPINION The privilege of not opting for PGT: an open letter HON. Members of Parliament, The Genetic and Genom- ic Counselling Association of Malta (GGCAM), whose pur- pose is to promote the genetic counselling profession, educate and engage in patient advoca- cy for genetic conditions, sup- ports the beginning of discus- sions around pre-implantation genetic testing for monogenic disorders (PGTM). Based on our expertise and experience with PGTM, we im- plore for the discussion to hap- pen with the following consid- erations in mind. Consider your use of language, prioritising empathy over im- pact Having trained in genetic ser- vices throughout the UK, we have had the opportunity to counsel individuals and cou- ples 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 be- cause they have personally experienced or witnessed the negative effects of genetic con- ditions, the pain of watching themselves or a loved one dete- riorate prematurely, the incon- solable 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 liv- ing 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 ar- guing 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 cor- rect information being shared among colleagues and the pub- lic The core competency of a ge- netic counsellor is to explain the intricacies of clinical ge- netics to patients in our profes- sion, as a result we know that it is not always easy to explain such a complex and potential- ly sensitive subject to people with varying levels of scientific knowledge. It is easy for infor- mation such as this to be mis- construed, and it would be un- fortunate 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 ap- proach to medicine, and pro- gress onto patient-centred, evidence-based practice geared towards a shared decision-mak- ing model. This bill will only be beneficial if it allows potential users of the PGTM service to make an informed and sup- ported 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 pro- cess, 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 dis- cussing takes into considera- tion the importance of genetic counselling for individuals and couples considering PGTM. We are specifically trained to help patients adapt to the clin- ical, 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 ap- proached in the wider context of increased and equitable ac- cess to genetic counselling for all patients in Malta who would benefit from such a service. Regardless of the importance placed on the genetic coun- selling service within the pro- posed protocol, those of us working locally have experi- enced delays of over two years in ensuring correct registration and ensuring protection and regulation of their title. The enhancement of the ge- netic counselling service must happen in parallel to any im- plementation of new genetic services to ensure that patients are served in the best possible way. GGCAM (VO 1831) is made up of genetic counsellors work- ing in Malta and the UK. They are reachable by email on in- fo@ggcam.org Donna Darmanin, Claire Grima, Glorianne Micallef, Roberta Rizzo, Loredana Vassallo, Christopher Vella 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