Anna Middleton
I am inspired by people – how they make sense of the world, how they communicate and within the context of genetics, how they make meaning of the science. The availability of genetic technology creates fascinating social and ethical issues for us all. I am continually asking ‘what does this mean for real people’ and ‘how can we help society guide the technology, rather than the other way around’
Anna is a creative researcher with expertise in leading, managing and designing innovative surveys and conducting focus groups to explore and understand what people think about the application of genomics, particularly in relation to the ethical issues raised by the science. She is passionate about delivering research that has real practical value in influencing policy, clinical practice and public engagement; her mission is to ‘socialise’ genomics so that anyone, irrespective of prior knowledge or familiarity, can connect with the ethical issues of relevance to them. Her PhD is in Psychology and Genetics and she is also a registered genetic counsellor. She is Professor/Affiliate Lecturer, Faculty of Education, University of Cambridge.
Her areas of interest include:
- The use of creative techniques to engage public audiences with genomics and ethical issues
- Attitudes towards genomic data sharing, ‘DNA and Big Data’, exploring trust and willingness to donate
- How to make genomics resonate for people currently disconnected to the field
- Understanding family attitudes towards the communication of genetic information with relatives against a patient’s consent
- Attitudes towards the sharing of incidental findings from whole genome studies
- Attitudes towards testing in pregnancy for deafness and selection for d/Deafness
- Attitudes towards access of genetic counselling services for D/deaf and hard of hearing people
- Genetic counselling supervision; policy for registration of genetic counsellors
Anna is an established leader in the genetic counselling profession internationally and is co-founder of the World Congress on Genetic Counselling in Cambridge. She has written genetic counselling policy as Chair of the Association of Genetic Nurses and Counsellors and previous Vice-Chair of the Genetic Counsellor Registration Board. She has also co-written the core curriculum for STP MSc Genomic Counselling and designed and co-led two modules of the University of Cambridge MSt Genomic Medicine; she co-created the Wellcome’s Genomic Practice for Genetic Counsellors course.
Anna is on the World Economic Forum’s Biotechnology council and has written position statements as part of this; chaired the oversight committee for Genomics England and Sciencewise’s work on the Social Contract between patients and the NHS; selected as the Genomics and Ethics expert on the Secretary of State for Health’s Topol review on the future of the NHS with respect to genomics, robotics and AI.
Having worked at the Wellcome Sanger Institute and Connecting Science at Wellcome Genome Campus since 2010, Anna came to this role having led research as Chief and Principal investigator at Cardiff University for 4 years and prior to this spent 10 years working in the NHS as a practicing genetic counsellor.