Interventions to improve patient access to and utilisation of genetic and genomic counselling services.

This is the protocol for a review and there is no abstract. The objectives are as follows. PRIMARY OBJECTIVE: The primary objective is to assess the effectiveness of interventions to improve patient identification, access to and utilisation of genetic and genomic counselling services when compared to: No intervention;Usual or current practice; andOther active intervention. SECONDARY OBJECTIVE: The secondary objective is to explore the resource use and costs associated with interventions aimed at improving patient identification, access to and utilisation of genetic and genomic counselling services from studies meeting the eligibility criteria. We will report on factors that may explain variation in the effectiveness of interventions aimed at improving patient identification, access to and utilisation of genetic and genomic counselling services from studies meeting the eligibility criteria. Another secondary objective is to explore how interventions which target improved patient identification, access to and utilisation of genetic and genomic counselling services affect the subsequent appropriate use of health services for the prevention or early detection of disease. It is also possible that the genetic counselling interaction itself will contribute to the possible use of preventative services.

Direct-to-consumer genetic testing: where and how does genetic counseling fit?

Direct-to-consumer genetic testing for disease ranges from well-validated diagnostic and predictive tests to 'research' results conferring increased risks. While being targeted at public curious about their health, they are also marketed for use in reproductive decision-making or management of disease. By virtue of being 'direct-to-consumer' much of this testing bypasses traditional healthcare systems. We argue that direct-to-consumer genetic testing companies should make genetic counseling available, pre- as well as post-test. While we do not advocate that mandatory genetic counseling should gate-keep access to direct-to-consumer genetic testing, if the testing process has the potential to cause psychological distress, then companies have a responsibility to provide support and should not rely on traditional healthcare systems to pick up the pieces. A video abstract is available for this article via this link .

Recognising the limitations of your genetics expertise.

The sixth article in this series aims to provide you with sufficient knowledge to refer a client for further genetic assessment. The focus is on the skills needed to recognise the limitations of one's own genetics competence, as described in the competency standard statement; this is that, at the point of registration, all nurses, midwives and health visitors should be able to recognise the limitations of their own genetics experience based on an understanding of their professional role in the referral, provision or follow up to genetics services.

Educational priorities and current involvement in genetic practice: a survey of midwives in the Netherlands, UK and Sweden.

OBJECTIVE: to investigate whether practising midwives are adequately prepared to integrate genetic information into their practice. DESIGN: a cross-sectional, postal, structured questionnaire survey was sent to practising midwives. SETTING: practising midwives from the Netherlands (NL), Sweden (SE) and the United Kingdom (UK). PARTICIPANTS: 1021 replies were received, achieving a response rate of 62%. FINDINGS: 79% (799/1015) of midwives reported attending courses with some 'genetic content' during their initial training. Sixty-eight per cent (533/784) judged this to have been useful for clinical practice. Variation was seen between countries in the amount of genetic content in post-registration training (SE 87%, NL 44%, UK 17%) and most was considered useful. Questions assessing clinical activity identified a current need for genetic knowledge. Midwives described low levels of self-reported confidence both in overtly genetic procedures and in everyday tasks that were underpinned by genetic knowledge. For eight of the 12 procedures, fewer than 20% of midwives considered themselves to be confident. Differences were apparent between countries. Midwives identified psychosocial, screening and risk assessment aspects of genetic education as being important to them, rather than technical aspects or genetic science. CONCLUSIONS: given the low reported confidence with genetic issues in clinical practice, it is essential that this is addressed in terms of the amount, content and targeting of genetic education. This is especially important to ensure the success of national antenatal and baby screening programmes. The results of this study suggest that midwives would welcome further training in genetics, addressing genetic topics most relevant to their clinical practice.

Genetics teaching for non-geneticist health care professionals in the UK.

OBJECTIVES: It was the aim of this study to describe the structure and content of training in genetics for non-genetics specialist health care professionals in the UK. METHODS: Data were collected by assessment of published syllabi and curricula and through contact with educational leads at responsible organisations. RESULTS: Twenty-six universities, 7 Royal Colleges and various intercollegiate boards and committees are involved in the provision of medical education at various levels, in addition to institutions offering nursing and/or midwifery training. Genetics is taught in variable formats, quantities and contents, and although some institutions are moving to adopt minimum competencies in genetics, this is by no means widespread. CONCLUSIONS: Given the wide number of stakeholders in the field, consensus competencies seem most likely to advance practice, and thus, phase II of the GenEd project will survey professionals to ascertain their priorities for genetic education.