Middleton, Anna
An entrepreneurial researcher who designs and delivers cutting edge social science research for the Wellcome Genome Campus.
Anna leads the Society and Ethics team in Connecting Science.
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. Is a subject matter expert on ethics for Health Education England's training for all health professionals taking consent for the 100k Genomes Project.
Experienced genetic counsellor who has co-written the core curriculum for genetic counselling training in the UK. Current Vice-chair of the Association of Genetic Nurses and Counsellors in the UK and ROI.
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.
For a fuller CV and career summary that spans the last 20 years see my personal website and blog.
Channel 4 news coverage of the GenomEthics study:
Here is a film that summarises the outcomes from the GenomEthics study that gathered attitudes from < 7,000 people towards receiving incidental findings from sequencing research, published in the European Journal of Human Genetics amongst others:
This is a Sky news interview on the Socialising the Genome project, found at www.genetube.org:
Publications
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Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research.
European journal of human genetics : EJHG 2016;24;1;21-9
PUBMED: 25920556; PMC: 4795240; DOI: 10.1038/ejhg.2015.58
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No expectation to share incidental findings in genomic research.
Lancet (London, England) 2015;385;9975;1289-90
PUBMED: 25529584; DOI: 10.1016/S0140-6736(14)62119-X
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Potential research participants support the return of raw sequence data.
Journal of medical genetics 2015;52;8;571-4
PUBMED: 25995218; PMC: 4518751; DOI: 10.1136/jmedgenet-2015-103119
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Genetic counselors and Genomic Counseling in the United Kingdom.
Molecular genetics & genomic medicine 2015;3;2;79-83
PUBMED: 25802877; PMC: 4367079; DOI: 10.1002/mgg3.123
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Position statement on opportunistic genomic screening from the Association of Genetic Nurses and Counsellors (UK and Ireland).
European journal of human genetics : EJHG 2014;22;8;955-6
PUBMED: 24398792; PMC: 4350604; DOI: 10.1038/ejhg.2013.301
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Communication about DTC testing: commentary on a 'family experience of personal genomics'.
Journal of genetic counseling 2012;21;3;392-8
PUBMED: 22223062; DOI: 10.1007/s10897-011-9472-8
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Communicating in a healthcare setting with people who have hearing loss.
BMJ (Clinical research ed.) 2010;341;c4672
PUBMED: 20880905; DOI: 10.1136/bmj.c4672
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Providing a transcultural genetic counseling service in the UK.
Journal of genetic counseling 2007;16;5;567-82
PUBMED: 17492497; DOI: 10.1007/s10897-007-9089-0
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Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia.
Human genetics 2019
PUBMED: 31531740; DOI: 10.1007/s00439-019-02062-0
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Australians' perspectives on support around use of personal genomic testing: Findings from the Genioz study.
European journal of medical genetics 2019;62;5;290-299
PUBMED: 30439534; DOI: 10.1016/j.ejmg.2018.11.002
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Australians' views and experience of personal genomic testing: survey findings from the Genioz study.
European journal of human genetics : EJHG 2019;27;5;711-720
PUBMED: 30666046; PMC: 6461785; DOI: 10.1038/s41431-018-0325-x; URL:
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Point of View: An evolution from genetic counselling to genomic counselling.
European journal of medical genetics 2019;62;5;288-289
PUBMED: 30991113; DOI: 10.1016/j.ejmg.2019.04.010
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World Congress on Genetic Counselling.
European journal of medical genetics 2019
PUBMED: 31004824; DOI: 10.1016/j.ejmg.2019.04.011
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Increasing nursing capacity in genomics: Overview of existing global genomics resources.
Nurse education today 2018;69;53-59
PUBMED: 30007148; DOI: 10.1016/j.nedt.2018.06.032
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'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methods.
Personalized medicine 2018;15;4;311-318
PUBMED: 29856292; DOI: 10.2217/pme-2018-0032
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Genetic counselling in the era of genomic medicine.
British medical bulletin 2018
PUBMED: 29617718; DOI: 10.1093/bmb/ldy008
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Society and personal genome data.
Human molecular genetics 2018
PUBMED: 29522190; DOI: 10.1093/hmg/ddy084
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APPLaUD: access for patients and participants to individual level uninterpreted genomic data.
Human genomics 2018;12;1;7
PUBMED: 29454384; PMC: 5816450; DOI: 10.1186/s40246-018-0139-5
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Human Germline Genome Editing.
American journal of human genetics 2017;101;2;167-176
PUBMED: 28777929; PMC: 5544380; DOI: 10.1016/j.ajhg.2017.06.012
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Your DNA, Your Say.
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
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Consumer Health Informatics Aspects of Direct-to-Consumer Personal Genomic Testing.
Studies in health technology and informatics 2017;245;89-93
PUBMED: 29295058
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Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research.
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.
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.
Lancet (London, England) 2015;385;9975;1305-14
PUBMED: 25529582; PMC: 4392068; DOI: 10.1016/S0140-6736(14)61705-0
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No expectation to share incidental findings in genomic research.
Lancet (London, England) 2015;385;9975;1289-90
PUBMED: 25529584; DOI: 10.1016/S0140-6736(14)62119-X
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Large-scale discovery of novel genetic causes of developmental disorders.
Nature 2015;519;7542;223-8
PUBMED: 25533962; PMC: 5955210; DOI: 10.1038/nature14135
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Genetic counselors and Genomic Counseling in the United Kingdom.
Molecular genetics & genomic medicine 2015;3;2;79-83
PUBMED: 25802877; PMC: 4367079; DOI: 10.1002/mgg3.123
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Synaptic, transcriptional and chromatin genes disrupted in autism.
Nature 2014;515;7526;209-15
PUBMED: 25363760; PMC: 4402723; DOI: 10.1038/nature13772
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Position statement on opportunistic genomic screening from the Association of Genetic Nurses and Counsellors (UK and Ireland).
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.
BMJ (Clinical research ed.) 2013;347;f6845
PUBMED: 24270507; DOI: 10.1136/bmj.f6845
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Empirical research on the ethics of genomic research.
American journal of medical genetics. Part A 2013;161A;8;2099-101
PUBMED: 23813698; PMC: 3884757; DOI: 10.1002/ajmg.a.36067
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Communication about DTC testing: commentary on a 'family experience of personal genomics'.
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.
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.
Journal of evaluation in clinical practice 2010;16;4;811-7
PUBMED: 20557411; DOI: 10.1111/j.1365-2753.2009.01207.x
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Reproductive liberty and deafness: Clause 14(4)(9) of embryo bill should be amended or deleted.
BMJ (Clinical research ed.) 2008;336;7651;976
PUBMED: 18456608; PMC: 2364821; DOI: 10.1136/bmj.39563.495741.80
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Providing a transcultural genetic counseling service in the UK.
Journal of genetic counseling 2007;16;5;567-82
PUBMED: 17492497; DOI: 10.1007/s10897-007-9089-0
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Editorial on supervision.
Journal of genetic counseling 2007;16;2;123-5
PUBMED: 17333405; DOI: 10.1007/s10897-006-9063-2
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Reflections on the experience of counseling supervision by a team of genetic counselors from the UK.
Journal of genetic counseling 2007;16;2;143-55
PUBMED: 17333406; DOI: 10.1007/s10897-006-9074-z
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Report from the UK and Eire Association of Genetic Nurses and Counsellors (AGNC) supervision working group on genetic counselling supervision.
Journal of genetic counseling 2007;16;2;127-42
PUBMED: 17308871; DOI: 10.1007/s10897-006-9065-0
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Tailoring genetic information and services to clients' culture, knowledge and language level.
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