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A week in the life of a genetic counsellor

Last Reviewed 8/11/2018

By Rosa Spencer-Tansley

Last year our Research Officer Rosa began part-time training as a genetic counsellor, alongside working at Genetic Alliance UK. To mark Genetic Counsellor Awareness day, she has provided us with a glimpse into what she has learned so far about life as a genetic counsellor.

Clinics

Clinics are a significant part of a genetic counsellor’s week. Although exact clinic time will vary slightly between different departments, a full-time genetic counsellor might expect to have two or three half-day clinics a week, seeing between three and five patients or families per clinic. Some genetic counsellors run very specialist clinics, such as clinics for specific cancers, cardiac conditions or neurological conditions, while others keep their clinical work broader in scope, depending in part on where they are based.

A big learning point for me has been that every appointment will be different to the next. Even if the diagnosis is the same, and the family history is very similar, patients have individual needs and concerns, and as the genetic counsellor you need to be able to respond to these.

Many patients do not know what to expect at their first genetic counselling appointment. The exact structure of the session and information covered will vary for every patient seen, but topics often covered include:

Exploring the patient’s medical and family history (if you haven’t provided this in advance it’s helpful to have a think about this before the appointment)

Discussing the patients’ needs and concerns

Discussions about genetic information (e.g. inheritance pattern, genetic risk) relevant to the condition in question

Supporting patients around decision-making

Providing emotional support, including signposting to additional relevant support

Patients access genetic counselling at all different stages of life – from prenatal, to adolescence, to late adulthood – and will have many different reasons for seeking genetic counselling. For instance some may want a better understanding of the genetic risk, some may want more information about a genetic condition in the family, and some may want to discuss their genetic testing options. Usually patients will have several issues that they would like exploring, not just one.

A big learning point for me has been that every appointment will be different to the next. Even if the diagnosis is the same, and the family history is very similar, patients have individual needs and concerns, and as the genetic counsellor you need to be able to respond to these.

Information gathering

Having the right information is really important in providing accurate information to patients and in supporting their decision-making. For example, in cancer, knowing age of diagnosis and specific types of cancer within a family is vital in providing tailored risk assessments for individuals. Or if a relative is considering predictive testing for a condition (testing to see if they have a genetic alteration that is linked to a certain genetic condition), it is important to know the specific gene change that has been found in their family. Given how important it is to have accurate information, it makes sense that information gathering is another significant part of a genetic counsellor’s week.

Information gathering can include obtaining medical and family history information, accessing relevant medical records and histology reports (to confirm diagnoses, for example), and obtaining relevant genetic information, such as results of any previous genetic testing. In reality this often means liaising with other departments, usually in different hospitals and frequently outside of the UK. If medical records of relatives need to be accessed, the relative will have to provide consent for this to happen.

Team meetings

Team meetings are another important event of a genetic counsellor’s weekly diary. Team meetings are attended by geneticists (consultants/registrars), genetic counsellors and genetic nurses and we discuss each patient seen in the previous week, and due to be seen in the upcoming week. This means that even though a patient sees just one healthcare professional in their genetic counselling appointment, in reality many more will likely have contributed to their care.

Genetic counselling also involves a lot of clinical ‘problem-solving’ and the team meeting can be really helpful in facilitating this. For instance, the team might help in spotting a certain pattern of symptoms in a family history that indicates a particular rare disease, or in navigating some of the ethical issues that can arise in clinical genetics. Cases are discussed and expertise shared, to support collaborative decision-making about a patient’s care.

Genetic counsellors will often attend multi-disciplinary team meetings, such as fetal medicine, dysmorphology, or dermatology meetings.  At these, the genetics team works with specialists from other departments to review cases, supporting diagnosis and patient management. For example, radiographers from the breast care team may consult with the genetics team on the management of a patient who has certain genetic markers of higher cancer risk (‘cancer predisposition syndromes’). These multi-disciplinary teams will become increasingly important with the mainstreaming of genetics, which is seeing genetics increasingly becoming part of a patient’s routine NHS care. One such initiative is the recently announced National Genomic Medicine Service which aims to see the sequencing of five million genomes by the NHS over the next five years.

This blog only really provides a very brief snapshot – in reality Genetic Counsellors will usually be involved in many other activities including teaching, research, service development, and even policy work. It’s a varied and stimulating job, and one that is incredibly rewarding. You see individuals at important – and sometimes difficult – times in their life. To be able to take on the role of supporting them, and helping them adjust, is a real privilege.

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