In recognition of 2020 being the World Health Organisation's "Year of the Nurse and Midwife", the International Society of Nurses in Genetics is interviewing one of their members every month. G2NA steering group member Dr. Emma Tonkin (University of South Wales) has been featured in the April edition of the ISONG newsletter. The article has been reproduced below but can be read in full alongside other member profiles on the ISONG website.
Dr. Emma Tonkin
Emma is an Associate Professor in Genomic Healthcare at the University of South Wales. In addition to her involvement in ISONG, Emma is also a founding member of the Global Genomics Nursing Alliance (G2NA). Early in her career, Emma worked as a research scientist in human genetics focused on molecular biology, gene mapping, and identification. With her group at Newcastle University, she identified the first gene associated with Cornelia de Lange syndrome. Emma also worked with the UK Cornelia de Lange patient group helping families understand the potential implications related to the identification of genes associated with the syndrome. Of her work with patients, Emma says, “I heard time and time again from parents about the challenges they faced in getting a diagnosis or accessing knowledgeable care for their child because the condition is so rare.” Her experience with the patient group led Emma to switch gears to focus on genetic and genomic education. In 2005, she joined the Genomics Policy Unit at the University of South Wales.
Emma now primarily works with nursing and midwifery professions to mainstream genomics across health services through health professional education, engagement, and service development initiatives. One initiative that Emma is particularly proud of is ‘Telling Stories, Understanding Real Life Genetics’ (www.tellingstories.nhs.uk), a free online genetics teaching and learning resource. The site contains a variety of tools and activities to support genomics education including more than 100 written and video stories from patients, family members, and healthcare professionals as well as people with, at risk of, or caring for someone with a genetic diagnosis. Currently Emma is working on expanding G2NA, which now has participants from more than 25 countries (https://g2na.org). The vision of G2NA is to serve as a unified international voice for advancing and integrating genomics into nursing practice. While there is important overlap in the goals of G2NA and ISONG including improving health through genomics, G2NA targets all nurses irrespective of role, academic preparation or clinical specialty rather than those who work as genetic/genomic nurses or counselors. G2NA has been working with the Wellcome Trust to deliver the “Nursing, Genomics and Healthcare” conference in April 2020, however due to current world events, the conference has been postponed. In the meantime, G2NA continues to hold quarterly webinars and work on testing and refining tools to support the integration of genomics into nursing.
Although Emma is not a nurse, she is a nurse champion and has been a member of ISONG for 15 years, served as a Board member, and has been a member of several committees. About ISONG, Emma says, “I want more people to know about ISONG and the great support, cooperation and collaboration that members offer freely to each other. I look forward to seeing ISONG continue to grow and sustain its membership, particularly non-US. The organization has a great foundation and history, and the future is bright.” Emma’s background in human genetics has enabled her to understand the clinical utility of genomic applications within healthcare and recognize the role that nurses and midwives can and should play.
Emma’s future plans include continuing to develop her program of research both within the UK and internationally, particularly in relation to ASIGN (a tool for the Assessment of Strategic Integration of Genomics across Nursing). Emma says, “Genetics/genomics is my everyday. Not only do I undertake research, but I get to teach our future nurses and midwives the genomics that they will need in practice. Within the UK, services and patient pathways are being completely redesigned around genomics. As a result, nurses will play a central role in offering genomic tests and providing care and treatments that are based on genomic information.” Emma is a passionate advocate for the role of nurses and midwives within genomic healthcare. With 2020 being the ‘Year of the Nurse and Midwife’, Emma thinks it is a “perfect time to shine a light on both genomics and nursing and help make other nurses and the wider public aware of why genomics is so relevant to practice.”
To connect with Emma, find her on Twitter @emmattonkin & @USW_GPU or at https://genomics.research.southwales.ac.uk/
