Alison Metcalfe

Genetic risk communication within families,  and between health professionals and families.

Family functioning and coping when affected or at risk from an inherited genetic condition.

Development of tools to measure the effectiveness of genetic risk communication and family functioning

My programme of research focuses on genetic risk communication within families at different life stages from antenatal to end of life care, and evaluating the impact the risk information has on family functioning and their quality of life. Some of my work also examines genetic risk communication between patients and health professionals and the implications this has for patients decisions. The findings from my initial work have resulted in the design of new interventions to facilitate family communication for the benefit of parents and their children, working in partnership with a multi-disciplinary team including patients and lay colleagues. These interventions are currently being tested for the feasibility of delivery and future tests effectiveness via National Institute for Health Research (NIHR) funded trials. These interevention studies are unique and are some of the first of their kind nationally and internationally within genetic based healthcare.

To improve the genetic risk communication, I have also undertaken research on the genetics education needs of health professionals including nurses, midwives and general practitioners, which examined the level of importance these health professionals placed on genetics in their clinical setting and the level of confidence on delivering the care required in relation to genetic risk information. To inform policy I served on national and international steering committees to provide guidance and advice on the inclusion of genetics educational programmes and professional competency frameworks including the Prime Minister’s Working Group on genetics education for nurses and midwives (2011); European Commission (2008), European Society of Human Genetics Education Advisory Group (2005); Department of Health and Wellcome Trust Working Group on Genetics Education for Health Professionals (2003).

The outcomes of my research have been published in the leading relevant journals, with over 50 publications to date. Findings from the empirical studies have been used nationally and internationally including UK, Europe, USA, South America and parts of Asia and we have prepared guidance leaflets for families in these countries and also undertaken multi-disciplinary teaching to increase awareness and the implementation of findings. I  have advised a wide range of organisations to improve awareness of the needs of families in genetic risk communication including : Department of Health (UK), European Union Commission, Human Genetics Commission (UK), Genetic Alliance UK, European Society of Human Genetics, The Wellcome Trust, local and regional charities and various National Health Service (NHS) hospitals and services. 

I am a registered nurse with a joint honours BSc degree in Biology and Psychology (1993) and a PhD in immunology and biomolecular science (1997). As a nurse I have worked in a wide variety of settings including both hospital and community care.

Postdoctorally I initially continued to work in laboratory science and had a Research and Development (R&D) management role implementing research governance systems in a NHS consortium of hospital and community trusts. Later I moved to a post and became deputy director of R&D in a NHS hospital where began pursuing my research interest on genetic risk communication. Eventually I took a research fellow position at the Univeristy of Birmingham to focus on my research interest and have built a programme of work examining the communication of genetic risk. Moving to King's College London has enabled me to consolidate my work and is providing opportunities to develop innovative approaches to improve the communication  of genetic risk.