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For the NHS to realise its ambition of integrating genomics into routine care, it will need the backing of its largest workforce. Nursing Times spoke to the nurse appointed to boost nursing and midwifery engagement in the topic about how this can be achieved.
While the term ‘genomics’ is relatively new, the subject of genetics and how certain conditions can be inherited will be familiar to most nurses. Technological advances mean it is now possible to get a reading of a person’s complete genetic code – known as the human genome – which comprises three billion ‘letters’ of DNA.
By comparing the sequence of these letters with that of a reference genome, new information is being uncovered that is helping to improve the diagnosis and treatment of certain diseases.
“We need to make sure every registered nurse and midwife feels comfortable understanding the basics of genomics”
The power of genomic technology is being used in the fight against Covid-19. An NHS study is under way to sequence the genomes of 20,000 people who were critically ill with the disease and 15,000 others who displayed mild or moderate symptoms to find out whether they reacted differently to the virus depending on their genetics.
“Historically, genomics has been seen as quite a niche area that nurses and midwives don’t particularly get involved in,” said Professor Janice Sigsworth, professional lead for nursing and midwifery genomics at NHS England and NHS Improvement. However, with the role of genomics in the health service set to rapidly expand over the coming years, it was now “everybody’s business”, said Professor Sigsworth, who is also director of nursing at Imperial College Healthcare NHS Trust.
She told Nursing Times that specialist nurses in certain fields had already “embraced” genomics in their practice. Now it was her job to get the rest of the nursing and midwifery workforce informed and enthused.
The recent introduction of genomics into Nursing and Midwifery Council proficiency standards for undergraduates – meaning newly qualified nurses would enter practice with an understanding of the topic –was a “real big step forward”, she said.
Professor Sigsworth’s next goal is to get genomics woven into the curriculum for postgraduate students too. But with 700,000 people already on the NMC register, she noted that “we need to make sure every registered nurse and midwife feels comfortable understanding the basics and getting the conversations right, and then knows where to go to get help if they want to know more or their patients want to know more”.
Building on the legacy of the pioneering 100,000 Genomes Project, NHS England and NHS Improvement has launched a national genomic medicine service (GMS) with the aim of making genomic testing and informed treatment a routine part of the patient journey. The next stage of the project had been to establish local GMS alliances to drive forward the agenda in their local areas.
The coronavirus pandemic has delayed the process and created uncertainty over the future direction of the work, but the expectation is still for alliances to begin to form this autumn. As part of this, each alliance – of which there are expected to be seven – will be tasked with setting up transformation projects for nursing and midwifery, pharmacy and medicine.
The aim of the nursing and midwifery programme, which is set to take place over two years, is to embed genomics into mainstream practice. Professor Sigsworth will provide strategic oversight for the project as the national professional lead, while clinical leads have also been appointed for midwifery, cancer and rare diseases.
The senior governance structure for each GMS alliance is expected to include representation from a chief nurse, or equivalent, from within the region to provide system leadership. Professor Sigsworth said the transformation projects would be targeted to the needs of that area. “So, if you are in an area with a high number of Covid patients,” she explained, “we might pick something around Covid”.
“Historically, genomics has been seen as quite a niche area that nurses and midwives don’t particularly get involved in”
While the design of the programme is still being finalised, Professor Sigsworth said one of her ambitions was to utilise the expertise of specialist nurses to help filter down learning to more-generalist colleagues. She noted how specialist nurses, including those working in diabetes, cardiology and breast cancer, had already “really embraced” genomics and “moved their practice on”.
“They’ve started to use it in their practice in a way I hadn’t imagined they would have done,” said Professor Sigsworth, who is hoping to “harness those experts” and get them talking to groups so “nurses can feel they understand some of the science and what it means”.
Professor Sigsworth said genomics had “already started to transform” approaches to diagnosing and treating certain conditions, including breast cancer, diabetes, sudden death syndrome and familial hypercholesterolaemia. She said it was allowing the introduction of “personalised medicine” and offering an opportunity to tailor treatment to individuals and, even, prevent or delay people getting unwell.
Taking familial hypercholesterolaemia – a genetic disorder that prevents the body from being able to remove low-density lipoprotein cholesterol from the blood – as an example, Professor Sigsworth said: “Before we knew there was a mutation on the gene, men would be dying in their 50s and 60s of heart attacks. Now we know there’s a gene mutation, we can track the family…and then we can start treatment and care for those conditions much earlier than we would have done. I think that means that people are going to live longer, and they’ll live more healthy lives.”
The main ways nurses are expected to be able to support the agenda are through the relationships they have with their patients to help identify those who may benefit from genome testing and to support families through the various steps of their genomic pathway.
Professor Sigsworth said: “Nurses are the ones who are there with the patient 24/7 really. Certainly in hospitals and in community settings, they’re often the ones who see patients more often than the doctors. The relationship nurses have with patients will help start those conversations.”
She added: “I think patients generally will talk more intimately to nurses about what they’re thinking and what they’re feeling.”
As part of the new service, the potential for more nurses to branch out into genetic counselling is also being explored. Meanwhile, for nurses who specialise in the care of diseases with a genetic element, along with research nurses, genomics will play a much more significant role in their job in future.
However, Professor Sigsworth recognised there were potential ethnical concerns that would need to be considered. “Some people might not want to know some of the things we might find and, certainly, there are some ethical discussions and debates to be had around how we best deal with that in terms of what we offer, whether we go ahead, and what we do with what we find. That’s for the patient as well as the staff member,” she said.
“I think patients generally will talk more intimately to nurses about what they’re thinking and what they’re feeling”
While the 100,000 Genomes Project left a legacy of understanding and awareness of genomics, Professor Sigsworth said the fact that Covid-19 had disproportionally affected people from some Black, Asian and minority ethnic groups in England had piqued wider public interest in genetic science because it had raised the question of whether the increased risk experienced by these communities was the result of genetics or environmental factors.
However, she stressed: “We have to make genomics much more accessible to nurses and midwives”, by putting it to them in the context of the patient pathway. “Some may find it a bit of a scary topic,” Professor Sigsworth added. “But when you start to couch it in their clinical practice and around patients, it becomes much more real for them.”
Asked what success would look like for the programme, Professor Sigsworth said she wanted genomics to be “on the agenda” for nurses and midwives. She also wanted to see them “feel more confident” and to see them in a position that means “they’re talking more about it, that they’re participating more in the research around it, which then improves the conversations with patients and their families.
“The speed at which all of this is moving will mean I’m absolutely certain that will happen over, maybe not the two years but over a not-much-longer time period,” she added.
Professor Sigsworth went on to say that the “explosion in [the] understanding of genomics” meant it had “got to be everyone’s business now” to incorporate it into their practice. “It can’t just sit with one small group of professionals, because patients will be wanting to know much more than they’ve ever known and need some of their questions answered. Everyone will need to know something and some people will need to know more,” she said.