It’s been a busy few weeks for genetics/genomics policy. Last week, as Emma reported in the blog below, the Department of Health released the progress review of the 2003 genetics White Paper. In the news release the Department of Health states that:
Views from over 50 stakeholders, scientists, and professional and patient groups overwhelmingly welcome the progress and investment made since the publication of the White Paper.
It’s pleasing to note the positive comments from some of the respondents about the work of the NHS National Genetics Education and Development Centre and the Genomics Policy Unit. The RCN stated that it wished to see the continued promotion of the genetics education framework developed in 2003 by the GPU and All Wales Medical Genetics Service, “so that informed nursing professionals will be able to contribute to the public debate/consultation that is inevitable on genetics issues, and so that they are able to inform the public and advocate for individuals who may be vulnerable to the misuse of information gained through genetic testing.” Whilst agreeing with those sentiments, I would add a more positive role for nurses in being able to identify and support people who might benefit from genetics services and developments in genomic medicine.
This week also saw the closing date for submission of evidence to the House of Lords Science and Technology Committee on Genomic Medicine. The key points we made were:
1. Nursing professional groups have a significant role to play in genomic medicine.
2. As the largest sector of the health professional workforce, the scale of the challenge to prepare nurses appropriately for genomic medicine is substantial.
3. The picture that emerges from research in this area over an extended period is that:
• competence and confidence in genetics/genomics is low,
• education provision is patchy and insubstantial, despite the development of an education framework of nursing competences in genetics.
4. Two major barriers to competence are a lack of awareness of genetics/genomics and a perception that it is of little relevance to nurses outside the specialist field of genetics.
5. Although there is still much to be done, progress is being made, and the NHS National Genetics Education and Development Centre is aware:
• of the support that both educators and practitioners need in delivering and acquiring genetics competence;
• of those areas of competence where support is most needed and where we need to target resources;
• of the sorts of resources that are needed and found useful, and are working to build these.
6. We recommend to the Committee that they seek the views of the Nursing and Midwifery Council on the important issue of setting detailed standards for genetics/genomics within the pre-registration curricula.
Finally, this week, as Kevin has blogged, GINA was passed unanimously through the United States Senate to prevent genetic information from being used as a basis for discrimination by employers and insurers. Many within the US have been working on this legislation for years, and our US colleagues in ISONG (International Society of Nurses in Genetics) have lobbied vigorously in support. While it still needs to be passed again by the House before going to the President to sign into legislation, it has come a long way.