The Malta Independent 6 December 2024, Friday
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Safeguarding and empowering patients – a genetic counsellor’s perspective

Sunday, 17 November 2024, 08:25 Last update: about 21 days ago

Written by Glorianne Micallef and Christopher Vella

Picture this scenario: You're about to undergo a medical procedure, a routine surgery or something more complex. You trust that the person holding the scalpel is a trained professional, right? We expect our doctors, nurses and other healthcare professionals to be properly qualified, ensuring they know exactly what they're doing. The existence of professional registers, such as the Medical Council and the Council for Nurses and Midwives, ensures that this is the case.

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But what if I told you there's an emerging field in healthcare where this isn't the case, yet? Enter genetic counselling, a profession that is still relatively new to Malta, but is becoming increasingly important in view of the continuous advancements in medical genetics and genomics.

Allow us to introduce ourselves. We're the Genetic and Genomic Counselling Association of Malta (GGCAM), a small but passionate group of professionals dedicated to helping people navigate the complex world of genetics in healthcare. There are only five of us in Malta, but our work is quite important, so much so that the Ministry for Health had fully funded our postgraduate genetic counselling training, and we are now employed within the national health service.

You might be wondering: What exactly do genetic counsellors do? And why should anyone care about regulating this profession?

Imagine you're faced with a genetic test that could tell you whether you're at risk for a serious condition like breast cancer or Huntington's disease. You might base important and life-altering decisions on the test result. Additionally, this test doesn't just affect you - it could have implications for your blood relatives. Suddenly, you're not just thinking about yourself but about your siblings, your children, even your future grandchildren.

This is where we come in. Genetic counsellors are like guides in this complex journey. We help you better understand the condition your doctors have mentioned, explain what the test can (and cannot) tell you, discuss the emotional rollercoaster that might follow, and help you weigh the pros and cons of knowing your genetic status.

But here's the catch: Despite the critical role we play, our profession has yet to be regulated in Malta.

That means there's no official register to ensure that those offering genetic counselling have the proper training and qualifications. And that's a big deal, because genetic counselling isn't just about running tests and giving results. It's about helping people make some of the most important decisions of their lives - whether to have the genetic test, how to manage a genetic risk, making reproductive decisions, and how to communicate potentially life-altering genetic information to family members.

At EU level, many countries are beginning to recognise the growing importance of the genetic counselling profession and are investing to establish their own regulated genetic counselling services. Malta was among the first to recognise this need, having funded training for genetic counsellors since 2018. However, the country has been slow to capitalise on this early lead over other EU nations.

Although various stakeholders understand the importance of regulating this profession, the Superintendence of Public Health has paused the process until other EU countries have established their own regulations. Our members have tirelessly pioneered the process of establishing the genetic counselling profession in Malta and are even assisting other countries in developing their own services. Meanwhile, the Maltese state's passive approach risks squandering the substantial investment it has made.

Regulating our profession should be a priority for any government that values public and patient safety. A regulated profession would ensure that everyone seeking genetic counselling in Malta receives accurate information, empathetic support and evidence-based advice. It's not just about protecting patients; it's about empowering them to make informed decisions about their health and future.

So, the next time you hear about a breakthrough in genetic testing, remember: Behind every test is a person, and behind that person should be a qualified genetic counsellor. In Malta, anyone presenting themselves as a genetic counsellor should be fully trained and qualified by accredited institutions recognised by the European Board of Medical Genetics. Always check credentials when accessing a genetic counselling service. We are confident that with the right regulations in place, we can ensure that everyone in Malta has access to the highest standard of care, so that no one has to navigate the complex world of genetic testing alone.

Christopher Vella and Glorianne Micallef are the chairperson and secretary of the Genetic and Genomic Counselling Association - Malta (GGCAM), respectively. Should you have any questions or comments in relation to this article, visit www.ggcam.org or contact them on [email protected].

 

GGCAM is a full member of the Malta Health Network (MHN). More information on the Malta Health Network can be found at www.maltahealthnetwork.org


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