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Meet the Genetic Counsellors

Watch this video to learn more about the role of genetic counsellors
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Genetic counsellors are highly skilled health professionals who have specific training in genetics and genomics, and also counselling and communication skills. Genetic counsellors see individuals and also their families, often when the diagnosis is fairly clear, so if after a genetic test has been done and a variant has been identified in an individual then a genetic counsellor might see the patient or the family at that point. Or they might see them before testing is done when it’s very clear what the condition is that’s being explored in the family. They might for instance see a child who’s born with a metabolic disorder, they might also counsel a couple who have questions about a reproductive risk of a future child.
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On the other hand a vast majority of our work is focused in adults who might be questioning risks inherent in their families, such as hereditary cancer risks. This is quite a different role from what the clinical geneticists have so they’re the medics and they do more diagnostic work, so genetic counsellors don’t do diagnostic work in the same way. We’re explaining the genetics to them, we are looking at their family history to think about what genes might be playing a role, we’re talking about genetic testing and we’re talking about the implications for them and their family members of any particular genetic diagnosis. Consultant genetic counsellors are expected to be clinical experts within a specific area of clinical genetics.
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People are not always aware that genetics can sometimes guide treatment, for example, if there is a meeting to discuss breast cancer patients, we will meet with breast surgeons and oncologists. That can change the type of chemotherapy they can have, that might change the type of surgical decisions they might have, and our role is to counsel them about that possibility and about what they would like to do moving forward. As the complexity of the tests that we’re offering our patients increases so does the complexity of the results and so delivering those results has to be done in a really clear and compassionate, sensitive way.
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Genetic counsellors are really uniquely positioned I think to take the years of hard work by researchers and scientists communicate it to our patients in a really clear and comprehensible way. That’s a great responsibility, but I also think it’s a privilege. The most important skills that genetic counsellors need is the ability to listen to walk for a moment in somebody else’s shoes, and those are the skills of empathy. So that the consultations they have are really really patient focused and actually will address the issues of importance to the patient. But the skill in genetic counselling is is doing all of that as well as incorporating genetic and genomic information.
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All of our patients walk through the clinic room doors with a different story, with a different set of emotional needs, a different set of medical needs. It’s about actually being useful to them in translating some potentially complex scientific and often difficult psychological information, which is not only important for them but for their wider family. The profession of genetic counselling is really in the spotlight at the moment. The roles are expanding out of clinical specialist services, there’s much more teaching, there’s much more support of other health professionals that a genetic counsellor works with. It’s an incredibly exciting time as genomics is mainstreamed across whole healthcare services and genetic counsellors need to be part of that journey. [music]

In this video we meet Genetic Counsellors, highly skilled health professionals who often see patients and their families when a genetic or genomic test is going to be, or has been, done.

Genetic counsellors have training in both genetics/genomics and counselling. They are integral to the genomics multidisciplinary team in a hospital and they see a wide variety of patients; both before genomic testing, to discuss the testing available and the implications of any test, and/or after testing to discuss results. Many genetic counsellors will see a wide variety of patients, including, for example: children diagnosed with a rare disease and their families; expectant mothers or couples undergoing prenatal testing; and adults questioning hereditary cancer risk. At consultant level, genetic counsellors will usually specialise, for example in cancer.

Professor Anna Middleton, Dr Vishakha Tripathi, Monika Kosicka-Slawinska and Tom Austin showcase what the work of genetic counsellors involves:

  • Genetic counsellors are specialists in unravelling the complexities of genomics for the patient and family in front of them.
  • Unlike clinical geneticists, who are the doctors responsible for diagnosis, genetic counsellors usually see patients when the diagnosis is quite clear: either after a test when the patient has a diagnosis, or before testing when it is clear what condition is being explored in the family. It is their job to ensure that the patient and family have fully understood the process and result.
  • Genetic counsellors have time to spend with patients so that they can ensure that they address the issues of concern for the individual or family in the consultation.
  • The most important skill that genetic counsellors need is the ability to listen, and to walk for a moment in somebody else’s shoes; but they are also highly skilled in explaining complex genomic concepts.

Increasingly, as genomics is mainstreamed across the NHS, genetic counsellors are called upon more and more to educate other healthcare professionals. They are often also involved in research and service development, particularly as they become more experienced.

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