Professor Anna Middleton, PhD MSc RGC | Head of Society and Ethics Research

Middleton, Anna

anna.middleton@sanger.ac.uk

A research leader and genetic counsellor who designs and delivers cutting edge social science research for the Wellcome Genome Campus.

Anna leads the Society and Ethics Research Group in Connecting Science. She is also Professor/Affiliate Lecturer at Faculty of Education, University of Cambridge.

Explores the social and ethical impact of genomics on people. Continually asking - how is society responding to genomic technology?

Utilises both quantitative and qualitative research methods to gather empirical data on attitudes, beliefs and values about genomics.

An enthusiastic communicator who thrives on stimulating discussion, motivating others and inspiring change.

Produces outcomes that have a practical value, e.g. films that can be used in teaching and public engagement. Was subject matter expert on ethics for Health Education England's training for all health professionals taking consent for the 100k Genomes Project. Was Genomics Ethics adivsor for the Topol Review, commissioned by the Secretary of State for Health on the future of genomics, AI and robotics in the NHS.

Experienced genetic counsellor who has co-written the core curriculum for genetic counselling training in the UK. Chair of the Association of Genetic Nurses and Counsellors in the UK and ROI (2018-2019); member of the 2019-2020 Biotechnology Council for the World Economic Forum.

My proudest achievement is being the first person to publish empirical data on the attitudes of Deaf parents towards using pre-natal testing for deafness, with the preference for having deaf children. Since my first publication on this in 1998, the ethical conundrum has been publicised widely; it has now become a familiar, almost mainstream ethical issue discussed in relation to genetic testing.

Channel 4 news coverage of the GenomEthics study:

 

This is a Sky news interview on the Socialising the Genome project, found at www.genetube.org:

 

Publications

  • Should doctors have a legal duty to warn relatives of their genetic risks?

    Middleton A, Milne R, Robarts L, Roberts J and Patch C

    Lancet (London, England) 2019;394;10215;2133-2135

    PUBMED: 31784025; DOI: 10.1016/S0140-6736(19)32941-1

  • Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data.

    Middleton A, Milne R, Howard H, Niemiec E, Robarts L et al.

    European journal of human genetics : EJHG 2019

    PUBMED: 31784701; DOI: 10.1038/s41431-019-0550-y

  • Attitudes of publics who are unwilling to donate DNA data for research.

    Middleton A, Milne R, Thorogood A, Kleiderman E, Niemiec E et al.

    European journal of medical genetics 2019;62;5;316-323

    PUBMED: 30476628; PMC: 6582635; DOI: 10.1016/j.ejmg.2018.11.014

  • 'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methods.

    Middleton A, Niemiec E, Prainsack B, Bobe J, Farley L et al.

    Personalized medicine 2018;15;4;311-318

    PUBMED: 29856292; DOI: 10.2217/pme-2018-0032

  • Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research.

    Middleton A, Morley KI, Bragin E, Firth HV, Hurles ME et al.

    European journal of human genetics : EJHG 2016;24;1;21-9

    PUBMED: 25920556; PMC: 4795240; DOI: 10.1038/ejhg.2015.58

  • No expectation to share incidental findings in genomic research.

    Middleton A, Morley KI, Bragin E, Firth HV, Hurles ME et al.

    Lancet (London, England) 2015;385;9975;1289-90

    PUBMED: 25529584; DOI: 10.1016/S0140-6736(14)62119-X

  • Potential research participants support the return of raw sequence data.

    Middleton A, Wright CF, Morley KI, Bragin E, Firth HV et al.

    Journal of medical genetics 2015;52;8;571-4

    PUBMED: 25995218; PMC: 4518751; DOI: 10.1136/jmedgenet-2015-103119

  • Genetic counselors and Genomic Counseling in the United Kingdom.

    Middleton A, Hall G and Patch C

    Molecular genetics & genomic medicine 2015;3;2;79-83

    PUBMED: 25802877; PMC: 4367079; DOI: 10.1002/mgg3.123

  • Position statement on opportunistic genomic screening from the Association of Genetic Nurses and Counsellors (UK and Ireland).

    Middleton A, Patch C, Wiggins J, Barnes K, Crawford G et al.

    European journal of human genetics : EJHG 2014;22;8;955-6

    PUBMED: 24398792; PMC: 4350604; DOI: 10.1038/ejhg.2013.301

  • Communication about DTC testing: commentary on a 'family experience of personal genomics'.

    Middleton A

    Journal of genetic counseling 2012;21;3;392-8

    PUBMED: 22223062; DOI: 10.1007/s10897-011-9472-8

  • Should doctors have a legal duty to warn relatives of their genetic risks?

    Middleton A, Milne R, Robarts L, Roberts J and Patch C

    Lancet (London, England) 2019;394;10215;2133-2135

    PUBMED: 31784025; DOI: 10.1016/S0140-6736(19)32941-1

  • Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data.

    Middleton A, Milne R, Howard H, Niemiec E, Robarts L et al.

    European journal of human genetics : EJHG 2019

    PUBMED: 31784701; DOI: 10.1038/s41431-019-0550-y

  • Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia.

    Milne R, Morley KI, Howard H, Niemiec E, Nicol D et al.

    Human genetics 2019

    PUBMED: 31531740; DOI: 10.1007/s00439-019-02062-0

  • Attitudes of publics who are unwilling to donate DNA data for research.

    Middleton A, Milne R, Thorogood A, Kleiderman E, Niemiec E et al.

    European journal of medical genetics 2019;62;5;316-323

    PUBMED: 30476628; PMC: 6582635; DOI: 10.1016/j.ejmg.2018.11.014

  • Australians' perspectives on support around use of personal genomic testing: Findings from the Genioz study.

    Metcalfe SA, Hickerton C, Savard J, Stackpoole E, Tytherleigh R et al.

    European journal of medical genetics 2019;62;5;290-299

    PUBMED: 30439534; DOI: 10.1016/j.ejmg.2018.11.002

  • Australians' views and experience of personal genomic testing: survey findings from the Genioz study.

    Savard J, Hickerton C, Tytherleigh R, Terrill B, Turbitt E et al.

    European journal of human genetics : EJHG 2019;27;5;711-720

    PUBMED: 30666046; PMC: 6461785; DOI: 10.1038/s41431-018-0325-x; URL:

  • Point of View: An evolution from genetic counselling to genomic counselling.

    Patch C and Middleton A

    European journal of medical genetics 2019;62;5;288-289

    PUBMED: 30991113; DOI: 10.1016/j.ejmg.2019.04.010

  • World congress on genetic counselling.

    Middleton A, Patch C and Biesecker B

    European journal of medical genetics 2019;62;5;287

    PUBMED: 31004824; DOI: 10.1016/j.ejmg.2019.04.011

  • Increasing nursing capacity in genomics: Overview of existing global genomics resources.

    Calzone KA, Kirk M, Tonkin E, Badzek L, Benjamin C and Middleton A

    Nurse education today 2018;69;53-59

    PUBMED: 30007148; DOI: 10.1016/j.nedt.2018.06.032

  • 'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methods.

    Middleton A, Niemiec E, Prainsack B, Bobe J, Farley L et al.

    Personalized medicine 2018;15;4;311-318

    PUBMED: 29856292; DOI: 10.2217/pme-2018-0032

  • Genetic counselling in the era of genomic medicine.

    Patch C and Middleton A

    British medical bulletin 2018

    PUBMED: 29617718; DOI: 10.1093/bmb/ldy008

  • Society and personal genome data.

    Middleton A

    Human molecular genetics 2018

    PUBMED: 29522190; DOI: 10.1093/hmg/ddy084

  • APPLaUD: access for patients and participants to individual level uninterpreted genomic data.

    Thorogood A, Bobe J, Prainsack B, Middleton A, Scott E et al.

    Human genomics 2018;12;1;7

    PUBMED: 29454384; PMC: 5816450; DOI: 10.1186/s40246-018-0139-5

  • Human Germline Genome Editing.

    Ormond KE, Mortlock DP, Scholes DT, Bombard Y, Brody LC et al.

    American journal of human genetics 2017;101;2;167-176

    PUBMED: 28777929; PMC: 5544380; DOI: 10.1016/j.ajhg.2017.06.012

  • Your DNA, Your Say.

    Middleton A

    The New bioethics : a multidisciplinary journal of biotechnology and the body 2017;23;1;74-80

    PUBMED: 28517993; PMC: 5448397; DOI: 10.1080/20502877.2017.1314890

  • Consumer Health Informatics Aspects of Direct-to-Consumer Personal Genomic Testing.

    Gray K, Stephen R, Terrill B, Wilson B, Middleton A et al.

    Studies in health technology and informatics 2017;245;89-93

    PUBMED: 29295058

  • Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research.

    Middleton A, Morley KI, Bragin E, Firth HV, Hurles ME et al.

    European journal of human genetics : EJHG 2016;24;1;21-9

    PUBMED: 25920556; PMC: 4795240; DOI: 10.1038/ejhg.2015.58

  • Potential research participants support the return of raw sequence data.

    Middleton A, Wright CF, Morley KI, Bragin E, Firth HV et al.

    Journal of medical genetics 2015;52;8;571-4

    PUBMED: 25995218; PMC: 4518751; DOI: 10.1136/jmedgenet-2015-103119

  • Genetic diagnosis of developmental disorders in the DDD study: a scalable analysis of genome-wide research data.

    Wright CF, Fitzgerald TW, Jones WD, Clayton S, McRae JF et al.

    Lancet (London, England) 2015;385;9975;1305-14

    PUBMED: 25529582; PMC: 4392068; DOI: 10.1016/S0140-6736(14)61705-0

  • No expectation to share incidental findings in genomic research.

    Middleton A, Morley KI, Bragin E, Firth HV, Hurles ME et al.

    Lancet (London, England) 2015;385;9975;1289-90

    PUBMED: 25529584; DOI: 10.1016/S0140-6736(14)62119-X

  • Large-scale discovery of novel genetic causes of developmental disorders.

    Deciphering Developmental Disorders Study

    Nature 2015;519;7542;223-8

    PUBMED: 25533962; PMC: 5955210; DOI: 10.1038/nature14135

  • Genetic counselors and Genomic Counseling in the United Kingdom.

    Middleton A, Hall G and Patch C

    Molecular genetics & genomic medicine 2015;3;2;79-83

    PUBMED: 25802877; PMC: 4367079; DOI: 10.1002/mgg3.123

  • Synaptic, transcriptional and chromatin genes disrupted in autism.

    De Rubeis S, He X, Goldberg AP, Poultney CS, Samocha K et al.

    Nature 2014;515;7526;209-15

    PUBMED: 25363760; PMC: 4402723; DOI: 10.1038/nature13772

  • Position statement on opportunistic genomic screening from the Association of Genetic Nurses and Counsellors (UK and Ireland).

    Middleton A, Patch C, Wiggins J, Barnes K, Crawford G et al.

    European journal of human genetics : EJHG 2014;22;8;955-6

    PUBMED: 24398792; PMC: 4350604; DOI: 10.1038/ejhg.2013.301

  • Policy challenges of clinical genome sequencing.

    Wright CF, Middleton A, Burton H, Cunningham F, Humphries SE et al.

    BMJ (Clinical research ed.) 2013;347;f6845

    PUBMED: 24270507; DOI: 10.1136/bmj.f6845

  • Empirical research on the ethics of genomic research.

    Middleton A, Parker M, Wright CF, Bragin E, Hurles ME and DDD Study

    American journal of medical genetics. Part A 2013;161A;8;2099-101

    PUBMED: 23813698; PMC: 3884757; DOI: 10.1002/ajmg.a.36067

  • Communication about DTC testing: commentary on a 'family experience of personal genomics'.

    Middleton A

    Journal of genetic counseling 2012;21;3;392-8

    PUBMED: 22223062; DOI: 10.1007/s10897-011-9472-8

  • Communicating in a healthcare setting with people who have hearing loss.

    Middleton A, Niruban A, Girling G and Myint PK

    BMJ (Clinical research ed.) 2010;341;c4672

    PUBMED: 20880905; DOI: 10.1136/bmj.c4672

  • Preferences for communication in clinic from deaf people: a cross-sectional study.

    Middleton A, Turner GH, Bitner-Glindzicz M, Lewis P, Richards M et al.

    Journal of evaluation in clinical practice 2010;16;4;811-7

    PUBMED: 20557411; DOI: 10.1111/j.1365-2753.2009.01207.x

  • Reproductive liberty and deafness: Clause 14(4)(9) of embryo bill should be amended or deleted.

    Emery S, Burke TB, Middleton A, Belk R and Turner G

    BMJ (Clinical research ed.) 2008;336;7651;976

    PUBMED: 18456608; PMC: 2364821; DOI: 10.1136/bmj.39563.495741.80

  • Providing a transcultural genetic counseling service in the UK.

    Middleton A, Robson F, Burnell L and Ahmed M

    Journal of genetic counseling 2007;16;5;567-82

    PUBMED: 17492497; DOI: 10.1007/s10897-007-9089-0

  • Editorial on supervision.

    Middleton A, Cowley L and Clarke A

    Journal of genetic counseling 2007;16;2;123-5

    PUBMED: 17333405; DOI: 10.1007/s10897-006-9063-2

  • Reflections on the experience of counseling supervision by a team of genetic counselors from the UK.

    Middleton A, Wiles V, Kershaw A, Everest S, Downing S et al.

    Journal of genetic counseling 2007;16;2;143-55

    PUBMED: 17333406; DOI: 10.1007/s10897-006-9074-z

  • Report from the UK and Eire Association of Genetic Nurses and Counsellors (AGNC) supervision working group on genetic counselling supervision.

    Clarke A, Middleton A, Cowley L, Guilbert P, Macleod R et al.

    Journal of genetic counseling 2007;16;2;127-42

    PUBMED: 17308871; DOI: 10.1007/s10897-006-9065-0

  • Tailoring genetic information and services to clients' culture, knowledge and language level.

    Middleton A, Ahmed M and Levene S

    Nursing standard (Royal College of Nursing (Great Britain) : 1987) 2005;20;2;52-6

    PUBMED: 16209408; DOI: 10.7748/ns2005.09.20.2.52.c3959

Career/Research Highlights

Middleton, Anna
Anna's Links
Anna's Timeline
2018

Chair Association of Genetic Nurses and Counsellors UK and ROI

2016

Head of Society and Ethics Research, Connecting Science

2015

Wellcome Genome Campus Principal Social Scientist

2010

Ethics Researcher on the Deciphering Developmental Disorders project at the Sanger Institute. Ran the GenomEthics project

2005

Chief and Principal Investigator on NIHR grant at Cardiff University on attitudes of d/Deaf people towards genetic counselling

2001

Cancer Genetic Counsellor at the East Anglia Medical Genetics Service, Addenbrooke's Hospital, Cambridge

2000

PhD Genetics and Psychology from University of Leeds - attitudes of d/Deaf people towards pre-natal testing for deafness

Genetic Counsellor at the Yorkshire Regional Clinical Genetics Service, St James' Hospital, Leeds

1996

Research Genetic Counsellor, collected the families that were part of the research collaboration that discovered the Connexin 26 gene, University of Leeds

1995

MSc Genetic Counselling, University of Manchester

1993

BSc Genetics (hons), Newcastle University

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