A career in genetic/genomic counselling

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Are you are studying a pure or applied science degree that contains genetics modules?

Would you prefer to work with people rather than test tubes?

If the answer is yes to both of these questions, then you might like to consider genetic counselling, or genomic counselling as it is now known, as a career.

I am a Freelance Careers Consultant but was a Genetic Counsellor for eight years from 1999 – 2007. I will attempt to describe some of the aspects of the job as well as the skills and the type of personality that would suit the role. Advice about training, entry requirements, pay etc. can be found on the Health Careers website.

A Genetic Counsellor supports families and individuals that are affected by, or at risk of, genetic disease. In the past, the role mainly focussed on families with single gene defects such as Huntington’s disease, Cystic Fibrosis and inherited cancers. However, as our knowledge of genetic disease increases, the future role will increasingly focus on supporting individuals and families affected by multigenic/multifactorial disease and disease susceptibility; hence the name genomic counselling.

The role involves an element of education e.g. explaining why the risk of having a child with Cystic Fibrosis (CF) is 1 in 4 to a couple that have both been found to carry the CF gene mutation. It also contains a significant amount of counselling e.g. helping a woman that has been found to carry a mutation in one of the breast cancer genes, to decide whether prophylactic mastectomy is the right option for her.  

As a Genetic Counsellor, your role is not to advise people on the best option; it is to offer unbiased information, outline options and support individuals and families in their personal decision making. If you have strong opinions about issues such termination of pregnancy or prenatal testing, for example, genetic counselling might not suit you; you will need to withhold your own views in an attempt to support people making choices that will impact on their life. To help improve your skills in this area, you are taught a ‘non-directive counselling approach’ as part of the training.

An interest in medical ethics would be an advantage as a Genetic Counsellor is often faced with ethically complex scenarios.  I once saw a family in which there were female, identical twins. One of the woman, who was 25, had decided to have a genetic test to see if she had a mutation in the breast cancer gene, BRCA2. She was found to carry a mutation and was, therefore, at a significantly increased risk of developing breast and ovarian cancer over her lifetime. She had become estranged from her twin sister and, being genetically identical, her news would have an impact on her twin and her future cancer risk. Unlike other areas of medicine, it is imperative to have the interests of the whole family in mind when dealing with inherited disease. With the interests of the family in mind, I discussed the implications of the BRCA2 result for both my patient and other family members, including her identical twin. Although my patient had become estranged from her twin, she felt that it was important that her sister knew about her risk and she decided to contact her, despite her reservations.  

As a science graduate, you may feel more able to carry out the scientific component of the job but feel less sure about the social, ethical and emotional aspects of the role. To gain a place on the NHS Scientific Training Programme (STP) to do genomic counselling, you will need to show substantive experience of having worked in a caring capacity and/or have had some counselling experience. It is essential to know if you have the communication skills and resilience to be a Genetic Counsellor before you embark upon the training. You need to be emotionally resilient in order to deal with issues around termination of pregnancy, prophylactic mastectomy and predictive testing for neurodegenerative diseases such as Huntington’s disease. As an example, when you are carrying out predictive genetic testing for Huntington’s disease, you will be telling 50% of patients that they will, at some point, develop a neurodegenerative condition that will result in depression, severe movement problems such as chorea and rigidity and severe cognitive impairment, to name just a few symptoms. This type of news is extremely difficult to give and requires empathy and emotional resilience on the part of the news giver!

Relevant experience for Genetic Counselling can be gained in a number of ways:

  • Enrol upon a basic counselling course such as those listed here.
  • Volunteer and train with the Samaritans where you will learn how to talk to people that need support, some of whom can even be suicidal.
  • Volunteer at a Hospital in a role where you are talking and listening to patients e.g. volunteer at Barts Health.
  • Volunteer with St John Ambulance e.g. as an event first aider or a community responder.

If you need more information about genetic or genomic counselling, the following websites are a good starting point:

Tracy Bussoli, Freelance Careers Consultant

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