Genetics, and the ethics behind it, will always be hotly debated. Professor Maggie Kirk, leader of the Genomics Policy Unit, talks about her work with families who have been devastated by genetics, and the resistance within nursing and midwifery to engage with the topic.
There are a number of charges against genetics – it takes a reductionist view of what it is to be human; it’s playing God; it’s hyped up. Are they justified? It depends on your view and on your understanding. I’d say, learn about the science and technology, what is and isn’t actually possible, then meet some of the families whose lives have been devastated by genetics – and then judge.
My particular research interest is engaging health professionals in genetics/genomics – what are the barriers and enablers, how can we best produce the evidence base to take professional groups such as nurses and midwives forward in genomic healthcare.
Investment in genomics research and technology is revolutionising our knowledge and understanding of how genomics contributes to health and disease. Related clinical developments are leading to an increasing number of individuals who can benefit from earlier and more accurate diagnosis and new therapeutic options.
However, lack of awareness and understanding about genomics amongst health professionals and the general public hampers effective translation into mainstream clinical practice.
Alongside this, there are 3.5 million or so people in the UK who are affected by rare diseases, most of which are genetic in origin. Unfortunately, many of these people are overlooked and they end up feeling isolated, their voices not heard.
I feel passionately that nurses and midwives must improve their competence to meet the needs of such individuals and families. For this, they do need to gain some understanding about genetics and genomics from the bioscientific perspective and equally importantly, they need to understand the psychosocial and ethical perspectives. Our research tries to provide practical support for the professions to help them achieve this.
So we have produced competency standards with curriculum guidelines and learning resources to support these. In fact, we produced the first competency framework ever specifically for nurses and midwives. Our approach inspired US nurses to produce their framework.
The challenge facing us remains huge however. There is a great deal of resistance within nursing and midwifery to engage with genetics/genomics. It’s not seen as a priority, it’s not seen as relevant, it’s seen as ‘too hard’, there’s no space in the curriculum… I’m sure that in the next half of this century, we’ll look back and think ‘how quaint’.
I’m very excited about a multidisciplinary project I am working on, with seedcorn funding from the Creative Exchange Wales Network. It’s just a proof of concept study, testing out our ideas for a much bigger project. Our team includes a commercial partner from the creative industries, a patient and a chartered psychologist, as well as members from the Genomics Policy Unit. It’s innovative and powerful – but I won’t tell you more about it yet!
The outcome I am most proud of though is the Telling Stories website, the result of a collaborative partnership between the Genomics Policy Unit, Genetics Alliance UK, Plymouth University and the NHS National Genetics Education & Development Centre. We have over 100 stories from individuals affected by genetics, set in education frameworks for nurses, midwives and doctors. The work has attracted two national awards. What’s great are the emails from people, including our storytellers, who write to thank us for giving them a chance to be heard.
There have been times when I despaired that our message would be heard, let alone valued. However, we did start to make an impact:
Along the way I have had the privilege of working with some wonderful people (professionals and patients) who are willing to share their expertise and experiences. If you really believe in what you are trying to achieve, don’t give up. If it’s important and worthwhile, keep going because eventually, you will start to make a difference.