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What is genetic counselling?

Genetic counsellors are highly trained healthcare professionals who specialise in the assesment of genetic risk. A registered genetic counsellor will have undergone several years of intense training and would usually have obtained a Masters degree in genetic/genomic counselling.

In the UK, genetic counsellors mainly work in an NHS setting either within a regional genetics service, or within a specialist team such as cardiology, oncology or neurology. Due to overwhelming demand, NHS patients often face very long waiting times to be seen by a genetic counsellor.

The role of a genetic counsellor is to assess the likelihood that a person or family is at risk of a genetic condition through assesment of the family history and in some cases, the use of genetic testing.

Genetic counselling involves all of the practical elements of taking a history, arranging genetic testing, and giving results, but it also includes many additional (and often overlooked) factors such as discussing the psychosocial impact of a genetic diagnosis, signposting for further support, and advice around matters such as the potential impact on insurance, future careers, and family planning.

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What should I expect in my genetic counselling consultation?

Private genetic counselling consultations at MyHeart Genetics take place online, and will typically last 45-60 minutes.

In this time we will:

  • Find out more about you and your concerns

  • Take a detailed three-generation family history

  • Ask you about your personal or family history of cardiac conditions

  • Assess the likelihood of an inhertied cardiac condition being present in you or your family

  • Discuss the option of genetic testing providing a full explanation of the benefits and limitations of testing, the type of results that might be returned, and what each of these results would mean for you and your family

  • Follow up consultations to discuss the result of genetic testing are also available

Picture demonstrating private cardiac genetic testing

Genetic Testing

If deemed appropriate, genetic testing can be organised for you. The aim of this test may be to try and identify an underlying genetic cause for your personal or family history of cardiac conditions, or it may be a targeted test looking for the faulty gene already found in a relative.

Genetic testing takes place on DNA, usually via a cheek swab, saliva sample, or blood sample. Testing is carried out in a range of fully accredited, specialist genetic laboratories. The result will often be ready a matter of weeks.

Genetic testing can be a complicated process and the results can be difficult to understand. A trained expert (such as a genetic counsellor) is required to give a full explanation of the benefits and limitations of testing and the possible results. The potential impications of testing on factors such as family planning, insurance, and future career options can also be discussed.

If a significant finding is uncovered during the genetic test, advice will be given regarding the proper management of the affected person and their family members.

Genetic counselling/testing is currently offered for the following conditions. If your personal or family history differs to the conditions below, please contact us for further guidance before arranging a consultation.

Hypertrophic cardiomyopathy

Dilated cardiomyopathy

Arrhythmogenic cardiomyopathy

Restrictive cardiomyopathy

Long QT syndrome

Short QT syndrome

Brugada syndrome

CPVT

Atrial standstill

Myocarditis

FH