Purpose Registered nurses and midwives require a degree of genomic literacy if they are to adequately communicate with other healthcare professionals and provide optimal care to patients, their families, and the community. Several studies have been conducted internationally to assess the genomic literacy of nurses; however, the genomic literacy of Australian registered nurses and midwives has not been investigated. The aim of this study was to measure the genomic literacy of Australian registered nurses and midwives through assessing participants’ understandings of genomic concepts most critical to nursing and midwifery practice, as well as their perceived knowledge and attitude towards genomics in nursing and midwifery practice. Design Cross‐sectional survey of Australian registered nurses and midwives using the Genomic Nursing Concept Inventory (GNCI©), a 31 multiple‐choice question survey instrument. Participants were recruited via two key Australian nursing and midwifery organizations over an 8‐month period in 2016. Methods Descriptive and inferential statistical techniques were used to calculate the total GNCI© score and scores on individual subcategories, as well as relationships between demographic variables and GNCI© scores. Findings Most respondents worked as clinicians (71.4%) in a hospital or hospital‐based setting (61.8%). Most registered nurses (80.5%) and midwives (97.2%) reported that genetics was relevant to clinical practice; however, over 80% of registered nurses and midwives believed their knowledge of genetics was poor or average. Genomic knowledge was assessed using the GNCI©. Scores ranged from 3 to 29 (out of a possible 31), with a mean score of 13.3 (SD 4.559) based on 253 (N = 253) respondents, indicating that genomic literacy is low. There was a significant difference between genomic knowledge scores and education and training level (p = .036). Conclusions The genomic literacy of registered nurses and midwives in Australia is low. More must be done to ensure Australian registered nurses and midwives have an adequate level of genomic literacy to provide optimal care to patients, their families, and the community. Clinical Relevance Modern medicine requires a healthcare workforce that is literate in genomics. Findings from this study may serve as the catalyst to improve the genomic literacy of the Australian nursing and midwifery workforce, allowing for improved health outcomes for individuals and the wider Australian public.

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The aim of this integrative review was to update a mixed method systematic review by Skirton, O'Connor, and Humphreys (2012) that reported on nurses' levels of competence in using genetics in clinical practice. Three electronic databases were searched using selected key words. Research studies published in English between January 2011 and September 2017 reporting levels of nurse competence in genetics or genomics were eligible for inclusion. The selected studies were subjected to thematic analysis. Three main themes were identified: (i) genomic knowledge and utilization, (ii) perceived relevance to practice, and (iii) genomic education. While the reviewed papers produced varied findings, many nurses were shown to have poor genomic knowledge and/or competency, and yet there was a consensus that most nurses believe genomics is important to their practice. The present review indicated that in the past 5 years nurses have made minimal progress toward achieving the core genomic competencies appropriate for clinical practice.

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IntroductionMedicines for very rare conditions present challenges for healthcare globally due to uncertain evidence and often extremely high costs. In 2014, SMC introduced an ultra-orphan framework placing less emphasis on the cost per quality adjusted life year (QALY). Despite this, many medicines continued to be not recommended. A new pathway aimed at improved patient access based on further evidence collection is now being implemented.MethodsThe development of the new pathway has involved collaboration with key stakeholders including patient groups, the pharmaceutical industry, and clinicians. Medicines that meet a new definition (based on four criteria including the prevalence of the condition treated) will be appraised by the SMC committee and a data collection plan will then be agreed with the pharmaceutical company.ResultsFrom April 2019, medicines validated as ultra-orphans will initially be appraised using the broader decision-making framework and the SMC committee will outline key uncertainties in the clinical effectiveness. The medicine will then be available for a period of at least three years while further data are gathered, potentially comprising ongoing clinical trials, registry data, and patient reported outcome measures. SMC will then re-assess the clinical and economic evidence to inform a final decision on routine use of the medicine in NHS Scotland.ConclusionsThe new pathway for ultra-orphan medicines will allow further evidence on their longer-term clinical benefits to be collected before a final decision on routine use. This approach reflects the current direction of travel in medicines regulation, by making medicines that address an unmet need available to patients at an earlier stage of development.