Genetics and Genomics ‘State-side’: an update

Well I’m back from my whistle-stop trip to NIH in the US (see Blog of 20th Sept). After so many meetings (9) and conferences (3 over 4 days) squeezed into just 8 days – where do I start? It was great to see a little of NIH; I hadn’t previously appreciated that many of the Institutes along with an incredible clinical centre are located on a single site.  [The clinical centre takes people from all over the US – all patients are taking part in trials and once accepted into a programme, costs are covered including travel from wherever you live, and for those that may need to be day patients over a long period (eg on a new cancer therapy) accommodation and living expenses close to NIH]

The original building is still there (see photo below) and now houses the office of the Director.

The original National Institute of Health building

The original National Institute of Health building

One of the main reasons for the trip was to share with everyone the work that we are doing here in the UK. I spent a really useful day attending and presenting at a meeting of US nursing faculty who are championing genetics and genomics education within their own universities (see photo). They have all been working over the past 12 months to integrate the subject more appropriately into their nursing curricula. Current professional guidelines in the US are much more explicit about training content than they are here in the UK. So even if educators don’t know much about the subject or wouldn’t usually consider including it (as we so often hear), the guidance provides the impetus for them to explore the subject and include it within their course.

US Faculty Champions meeting at NIH

US Faculty Champions meeting at NIH

[Hosts Jean Jenkins and Kathy Calzone are standing at the far left and far right (respectively) on the middle row. I’m on the same row, third from the right!]

At the annual conference of the National Coalition for Health Professional Education in Genetics, the main focus of discussion was the role of genetics and genomics in the public health agenda – the lessons that can be learnt from looking at subsets of common diseases where genetics plays a primary role and using the information gained to inform public health initiatives. Those I spoke to were interested to hear of Wales’ new service (which is leading the UK) to identify individuals at risk of inherited high cholesterol (1 in 500 of the population) and the impact this will hopefully have on saving lives and changing treatment and lifestyle approaches. There was also a number of talks that included Electronic Health Records (EHRs) and the integration of family health history information. This obviously had me thinking about our NHS and why it is taking so long to develop/roll out EHR here (!!) – some of the US systems already deal with huge numbers of individuals. It will be interesting to see how the US manages the consent and confidentiality issues associated with family health information.

I’ve come back with lots of ideas and plans; the question now is where to start…….?

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