Position/Status

Professor and Director of Kavli Centre for Ethics, Science and the Public

Assoc Director Engagement and Society, Wellcome Connecting Science, Cambridge

https://en.wikipedia.org/wiki/Anna_Middleton

E-mail Address

am2624@cam.ac.uk

Phone

+ 44 (0)1223 492391

Qualifications

• PhD Genetics and Psychology
• MSc Genetic Counselling
• BSc Genetics (Hons) 2:1
• Certified as a Registered Genetic Counsellor with the Genetic Counselling Registration Board UK and Republic of Ireland [GCRB Reg 120].

Membership of Professional Bodies/Associations

• British Society for Genetic Medicine (formally British Society of Human Genetics)
• Association of Genetic Nurses and Counsellors. Chair AGNC 2018-2020
• GCRB Register of Genetic Counsellors, UK and Republic of Ireland. Previous Vice-Chair GCRB

Profile

Anna Middleton is Director of the Kavli Centre for Ethics, Science and the Public in the Faculty of Education. She is also Associate Director for Engagement and Society, core funded by Wellcome, working at Wellcome Connecting Science, alongside the Sanger Institute 10 miles south of the University. Here she leads a team of researchers and engagement experts exploring the social and ethical impact of genetic technology. Please see group website for details of outputs and impact. 

Anna is an experienced psychologist and genetic counsellor, having worked with patients in the NHS she uses her clinical experience to guide social science research that focusses on how people make sense of science. Such empirical work feeds directly into policy, education, engagement and clinical practice. She has co-written the core curriculum for training genomic counsellors for the NHS in England and has a particular interest in how people make meaning of genomics and the ethical issues raised for them. Her programme of research has a direct impact on the way genomics is communicated in a healthcare setting, and she has a specialist interest in how to engage with both scientists and publics about ethics. 

Academic Area/Links

• Exploring the impact of genomics on people
• Understanding how to communicate science and its ethical implications
• Gathering empirical data using quantitative and qualitative research methods
• Genetic counselling research and practice

Research Topics

• Attitudes towards DNA and Big Data
• Finding new and creative ways to reach the public with genetics (e.g. via film, animation, metaphor)
• Attitudes towards the sharing of incidental findings from whole genome studies
• Attitudes towards testing in pregnancy for deafness
• Attitudes towards access of genetic counselling services for D/deaf and hard of hearing people
• Counselling supervision; policy for registration of genetic counsellors

Current Research Project(s)

• Your DNA, Your Say (2016 – ) Assessing global public attitudes towards genomic data sharing. 15 translations of the survey: (English, German, French, Russian, Polish, Portuguese, Icelandic, Italian, Spanish, Japanese, Arabic, Hindustani, Mandarin, Ewe, Twi). Empirical data from this work is used within policy from the Global Alliance for Genomics and Health. Education films for this project have been awarded official selection at international science film festivals around the world. 
• The Music of Life – (2017 –) Collaboration Clinical Genetics Department at Addenbrooke’s Hospital in Cambridge and Guy's Hospital in London. Films using the metaphor of music to describe genomics are being trialled with patients attending genetics clinics.  Funded by the Translation Fund, Biodata Innovation Centre, Cambridge 
• ABC v St George’s Healthcare NHS Trust (2017 –) Collaboration with Theatre of Debate. Understanding public expectations of health professionals in the sharing of confidential genetic information with relatives. Film and public survey study. 
• Socialising the Genome (2015 – 2016) Collaboration between Genomics England, Wellcome and Wellcome Genome Campus. Partnership with Thin Air Factory. Explored how to make genomics resonate for people who have never heard of the term. Based on focus groups with various publics, created 6 animations using different memes, metaphors and imagery to explain genetics. The films were then evaluated via an online survey and rating highly for information content, interest and likability. They are now used as part of Public Engagement materials via Genomics England and appear on the websites of various Genomic Medicine Centres; films have been awarded official status selection at 5 international film festivals. 
• GenomEthics (2011 – 2016) A branch of Deciphering Developmental Disorders (DDD) project (£11mill funding from the Health Innovation Challenge fund, the ethics study was a part of this larger grant). Gathered public, health professionals and scientists’ attitudes towards the return of incidental findings from sequencing research. The outcomes have been used in many different settings, influencing policy, practice and teaching.

Teaching

• Co-wrote the core curriculum for Masters Level Genomic Counsellor training England. Invited expert by Health Education England Curriculum Development Group.
• Current MSt co-lead for two modules: Counselling Skills for Genomics and Ethical, Legal, Social Issues of Genomics on the MSt Genomic Medicine, University of Cambridge, Wellcome Trust Sanger Institute, European Bioinformatics Institute.
• Co-creator of the World Congress of Genetic Counselling, 2017, 2019, 2021, Wellcome Genome Campus, Cambridge. Endorsed by the Association of Genetic Nurses and Counsellors (UK and Republic of Ireland) and National Society of Genetic Counselors (USA).
• Co-creator of the Genomic Practice for Genetic Counsellors course for professional training of genetic counsellors in genomics. Sponsored by Health Education England and endorsed by the Association of Genetic Nurses and Counsellors (UK and Republic of Ireland).
• Invited by Health Education England to act as subject matter expert on “Consent and Ethics” for their training and education of mainstream health professionals in the NHS consenting patients into the 100,000 Genomes Project. Developed and delivered online teaching materials and films.
• Invited teacher on the Wellcome Trust Advanced Courses for professional’s programme: Fundamentals of Genetics Jan 2014, Molecular Pathology and Diagnosis of Cancer Nov 2015, Nov 2014, Nov 2013.
• Invited Board Moderator of the Genetic Counsellor Registration Board UK and Eire, to provide academic moderation and support for genetic counsellor assessors overseeing Masters level professional registration of genetic counsellors (2013 - present).

Recent Select Publications

Middleton A, et al (2020) Global public perceptions of genomic data sharing: what shapes the willingness to donate DNA and health data? American Journal of Human Genetics, vol. 107, issue 4, pp 743-752

Middleton A, et al (2020) Professional duties are now considered legal duties of care within genomic medicine. European Journal of Human Genetics, vol. 28, pp 1301-1304

Middleton A, et al (2020) Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data. European Journal of Human Genetics, vol. 28, issue 4, pp 424-434

Middleton A, et al (2019) Should doctors have a legal duty to warn relatives of their genetic risks? The Lancet, vol. 394, issue 10215, pp 2133-2135

Milne R...Middleton A (senior author) (2019) Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia. Human Genetics, vol. 138, issue 11-12, pp 1237-1246, December

Middleton A, Patch C, Biesecker B (2019) Editorial: World congress on genetic counselling. European Journal of Medical Genetics, vol. 62, issue 5, pp 287, May

Middleton A, Patch C, Biesecker B (Eds) (2019) Evidenced-Based Genetic Counselling [Special issue]. European Journal of Medical Genetics, vol. 62, issue 5, May

Middleton A, et al (2019) Attitudes of publics who are unwilling to donate DNA data for research. European Journal of Medical Genetics, vol. 62, issue 5, pp 316–323, May

Patch C, Middleton A (2019) An evolution from genetic counselling to genomic counselling. European Journal of Medical Genetics, vol. 62, issue 5, pp 288-289, May

Middleton A, et al (2018) ‘Your DNA, Your Say’: global survey gathering attitudes toward genomics: design, delivery and methods. Personalized Medicine, vol. 15, issue 4, pp 311-318, July

Patch C, Middleton A (2018) Genetic counselling in the era of genomic medicine. British Medical Bulletin, vol. 126, issue 1, pp 27–36, June

Middleton A (2018) Society and personal genome data. Human Molecular Genetics, vol. 27, issue R1, pp R8–R13, March

Parry V and Middleton A (2017) Socialising the Genome. Lancet Volume 389, No. 10079, p1603–1604

Middleton A, et al (2017) Direct to consumer genetic testing - where and how does genetic counselling fit? Personalized Medicine Vol. 14, No. 3, 249-257

Middleton A (2017) Your DNA, Your Say. The New Bioethics 23:1, 74-80

Middleton A, et al (2017) The Role of Genetic Counsellors in Genomic Healthcare in the United Kingdom: A Statement by the Association of Genetic Nurses and Counsellors. European Journal Human Genetics online publication 25, 659–66

Middleton A, et al (2016) Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research European Journal Human Genetics 24(1): p21-9

Middleton A, et al (2015) Potential research participants support the return of raw sequence data. Journal Medical Genetics 52(8): p571-574