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Anna Middleton

Position/Status

Professor/Affiliate Lecturer Faculty of Education

Head of Society and Ethics Research, Connecting Science, Wellcome Genome Campus

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. Vice-Chair AGNC 2016
  • GCRB Register of Genetic Counsellors, UK and Republic of Ireland. Previous Vice-Chair GCRB
  • Transnational Alliance of Genetic Counselors (founded in US)

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Profile

Anna Middleton is founder and Head of Society and Ethics Research at Connecting Science in the Wellcome Genome Campus, Cambridge. She is core funded by Wellcome, works within the Sanger Institute and leads a team of researchers exploring the impact of genetic technology on people.

Anna is an experienced genetic counsellor, having worked with patients in the NHS she uses her clinical experience to guide social science research to explore people’s attitudes to various issues surrounding genomics. Such empirical work feeds directly into policy, education and clinical practice. She has co-written the core curriculum for training genomic counsellors for the NHS in England. Her programme of research has a direct impact on the way genomics is communicated in a healthcare setting, with a particular focus on contributing an evidence base to genetic counselling practice.

Academic Area/Links

  • Exploring the impact of genomics on people
  • Gathering empirical data using quantitative and qualitative research methods
  • Genetic counselling research and practice

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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. 14 translations of the survey: (English, German, French, Russian, Polish, Portuguese, Icelandic, Italian, Spanish, Japanese, Arabic with Zulu, Urdu and Mandarin planned). Empirical data from this work will be used within policy from the Global Alliance for Genomics and Health. Education films for this project have been awarded official status selection at 4 international film festivals. Funded by Wellcome and Global Alliance for Genomics and Health (£60k).
  • The Socialised Genome – (2017 –) Collaboration Clinical Genetics Department at Addenbrooke’s Hospital. Creating evidence based films for use with patients within genetic counselling practice, evaluating the delivery of information about genomics. Funded by the Translation Fund, Biodata Innovation Centre, Cambridge (£50k)
  • 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. Funded by Wellcome Genome Campus (£65k)
  • 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. Funded by WGC, WT and GE: £120k
  • 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.

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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, 4-6th October 2017, 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).

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Principal and Recent Publications

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

Roberts J and Middleton A (2017) Genetics in the 21st Century: Implications for patients, consumers and citizens. F1000 Research 6:2020 (doi: 10.12688/f1000research.12850.1)

Ormond KE, Mortlock DP, Scholes DT, Bombard Y, Brody LC, Faucett A, Garrison NA, Hercher L, Isasi R, Middleton A, Musunuru, K, Shriner D, Virani A, Young CE (2017) Human Germline Genome Editing. American Journal Human Genetics 101: 1-10

Wright C, Middleton A, Barrett JC, Firth HV, FitzPatrick DR, Hurles ME, Parker M (2017) Returning genome sequences to research participants: policy and practice. Wellcome Open Research 2:15 (doi: 10.12688/wellcomeopenres.10942.1)

Middleton A, Mendes Á, Benjamin CM, Howard HC (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, Marks P, Bruce A, Protheroe-Davies L, King C, Claber O, Houghton C, Giffney C, Macleod R, Dolling C, Kenwrick S, Scotcher D, Hall G, Patch C, Boyes L (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

Sundby A, Boolsen MW, Burgdor KS, Ullum H, Hansen TF, Middleton A, Mors O (2017) Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research. Am J Med Genet A 173(10): 2649-2658

McRae JF, Clayton S, Fitzgerald TW, et al.... Middleton A (176th author) Prevalence and architecture of de novo mutations in developmental disorders (2017) Nature 542: p433–438

Middleton A, Morley K, Bragin E, Firth HV, Hurles M, Wright CF, Parker M on behalf of the DDD study (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, Wright CF, Morley KI, Bragin E, Firth HV, Hurles ME, Parker M on behalf of the DDD study (2015) Potential research participants support the return of raw sequence data. Journal Medical Genetics 52(8): p571-574

Middleton A, Hall G, Patch C (2015) Genetic counsellors and Genomic Counselling in the United Kingdom. Molecular Genetics and Genomic Medicine 3(2) 79-83.

Middleton A, Parker M, Bragin E, Morley K, Wright C, Firth HV, Hurles M on behalf of the DDD study (2014) No expectation to share incidental findings in genomic research. Lancet 385(9975): p1289-1290

Middleton A, Bragin E, Morley KI, Parker M on behalf of the DDD Study (2014) Online questionnaire development: using film to engage participants and then gather attitudes towards the sharing of genomic data. Social Science Research 44: 211-223

Middleton A, Bragin E, Parker M on behalf of the DDD Study (2014) Finding people who will tell you their thoughts on genomics – recruitment strategies for social sciences research J Community Genetics. 5:291-302

Middleton A, Patch C, Wiggins J, Barnes K, Crawford G, Benjamin C, Bruce A on behalf of the Association of Genetic Nurses and Counsellors in the United Kingdom and Ireland (2014) Position statement on opportunistic genomic screening from the Association of Genetic Nurses and Counsellors (UK and Ireland) European Journal Human Genetics 22: 955–956