The role of a neurogenetics clinical nurse specialist in transforming neuroscience nursing by embedding genomics in clinical practice

Background:

Neurogenetic conditions, although individually rare, are common in certain subgroups in neurosciences such as, but not limited to the following: neuromuscular disorders, young-onset movement disorder, and mitochondrial disorders. CNS' and APNs in neurosciences are perfectly positioned to offer genomics and therefore embedding it in the nurses' clinical practice is imperative to deliver modern, evidence-based and holistic nursing care. However, neurosciences CNS' and APNs in UK may not necessarily have the appropriate knowledge, skills or competence to facilitate genomics conversation, genomics testing, return of genomic test results, and genomic counselling. Therefore, a neurogenetics clinical nurse specialist was created to embed and promote genomics in neurosciences nursing practice.

The neurogenetics CNS facilitates the nurse-led neurogenetics clinic with a primary objective of providing equitable access to genomic services to patients with rare neurogenetic conditions. The neurogenetics CNS is involved in the following: (1) facilitate genomic conversations and testing to confirm/support clinical diagnosis; (2) counselling pre and post genomic test; (3) referral to clinical genetics team for predictive/cascade testing of at-risk family members; (4) referral to local health and social care services i.e. community physiotherapist, mental health teams; (5) signposting to support groups (6) genomic education of clinical and non-clinical staff; (7) academic and clinical research.

Recommendation:

Nurses are perfectly positioned to; facilitate genomics conversation; provide counselling to help/support the patient to better understand the genomic test and the results (if available) as well as its implications to themselves and their family; treatment options (if available); active monitoring and symptom management; access to local health and social care services; and advanced care planning. Therefore, upskilling all nurses (and midwives) in basic genomics is timely and necessary to deliver a modern, evidence-based, and holistic nursing care. This could be achieved by providing educational opportunities to nurses and midwives (including students) to learn more about the role of genomics in healthcare such as emerging technologies used in delivering genomics nursing/midwifery services. In the future, nurses will be at the forefront of delivering advanced healthcare services. Genomics nursing and midwifery is key in achieving this future goal.