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February 10, 2015

Genomics News
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» Mitochondrial disease – so what are the next steps?

Last week you couldn’t move for discussion and speculation about the debate of the draft Human Fertilisation and Embryology (Mitochondrial Donation) Regulations that was about to take place in the House of Commons. The media was full of ‘3 parent … Continue reading

January 8, 2015

Genomics News
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» Cancer Genomes – Is sequencing or functional analysis the way forward?

An interesting article in this weeks Nature News looks at the completion of the multi-million dollar Cancer Genome Atlas project and considers which direction future work might take. With nearly 10 million cancer-related mutations identified, data from this project has … Continue reading

July 14, 2014

Genomics News
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» Criticism over NHS Down’s syndrome test availability

According to BBC new, a new screening test for Down’s syndrome is still not available across the Welsh NHS, six years after guidelines said it should be. In 2008 the National Institute for Health and Care Excellence (NICE) said all … Continue reading

March 12, 2013

Genomics News
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» New national competences follow in the footsteps of GPU’s work

We are delighted to see the launch of the Core competences in genetics for sickle cell and thalassaemia counselling. The work undertaken by the NHS Sickle Cell & Thalassaemia Screening Programme has been ongoing since Dec 2011 and Maggie Kirk … Continue reading

August 9, 2012

Genomics News
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» Born Healthy – reducing the burden of birth defects in developing countries

The Born Healthy programme was established by the PHG Foundation as a response to the urgent need to reduce the burden of birth defects in developing countries. It has recently been singled out in a WHO report as one of … Continue reading

January 9, 2012

Journalism News
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» The Media Policy Agenda for Wales

As the UK Government prepares to publish its Communications Green Paper, the first step towards a new Communications Act, Huw David Jones reports on the priorities for Welsh stakeholders.  This blog was orginally published on the LSE Media Policy Project. … Continue reading

December 13, 2010
» Iaith Fyw : Iaith Byw

WAGs proposed new Welsh Language Strategy is now open for consultation, or perhaps not as it appears to be listed as a “closed” consultation

http://cymru.gov.uk/consultations/welshlanguage/wlsconsultation/?lang=en&status=closed

September 10, 2010
» Video on the language measure

The WAG has uploaded a short video about the Proposed Welsh Language Measure onto their YouTube channel.

It is interesting to see how web2.0 is gradually becoming an accepted part of the media world – press release, check! – Tweet, check! – YouTube, check!

Two things in particular about the content struck me – firstly the strong mention of mobile phones (1:20) – and secondly the extent to which the cattle auction rooms (2:56) resemble the Assembly debating chamber (don’t get me wrong, I love the building, was just struck by the resemblance!).

March 17, 2010
» Is having a language enough?

Last night I watched Week In Week Out: A Broken Heart – “Reporter Phil Parry returns to the village of Llangeitho after twenty years as he investigates the health of the Welsh language in its traditional strongholds, and asks some uncomfortable questions about its future.” Part of the programme was an interview with Alun Ffred Jones, the Minister for Heritage. A couple of the comments he made brought me back to thinking about what it would mean for Wales to be a truly bilingual country…

The particular comments (around 20:43) were: ”...the success is that people have two languages, whether they choose to use both of them in equal measure is not [interrupted by interviewer]” and ”...and that is the important point; that it [the Welsh language] is there for them to use…”

Does this suggest that the WAG would consider a Wales in which everyone could speak Welsh, but no-one actually does, to be a truly bilingual country? I’d like to think not. But is does raise the critical issue of how we move from speakers who are bilingual (in the sense of being able to use both Welsh and English) to a bilingual society where both languages have vibrant communities of users. Without users, individual competence and confidence diminishes, opportunities for use diminish and the production of new, quality materials in Welsh also diminishes. This distinction between speakers and users is an important one, and whilst producing speakers might be relatively easy, it is not clear how government policy can create users.

April 25, 2008

Genomics News
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» GINA, genomics and policy

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.