Anna Middleton PhD MSc RGC

​​Creator of the 'GenomEthics' study - led on the design of a quantitative and qualitative research project to gather empirical data on the feedback of genomic findings from whole genome research studies.  More specifically, asking ‘what to do with Incidental Findings from genome research?'  Collaborating closely with Prof Mike Parker, Director of Ethox, University of Oxford.​ Research ongoing at the moment, study questionnaire and integrated films can be found at: http://genomethics.org. This project forms the ethics arm of the Deciphering Developmental Disorders (DDD) project http://www.ddduk.org​.

As the only social scientist on campus, frequently invited to offer an 'ethics' voice on campus projects (e.g. Society and Personal Genomics project; European Molecular Biology Human Data Committee; Human Material and Data Management External Committee), and also invited to talk about the impact of genomics on society in the media (e.g. BBC World Service, interviews for the Telegraph, Observer, Daily Mail, Channel 4 news, BBC radio Cambridgeshire).

Have made a contribution nationally and internationally as an expert in genetic counselling and ethics/genomics issues (e.g. invited International Plenary speaker at the Human Genetics Society of Australiasia conferernce in Adelaide (2014), invited chair of the Association of Genetic Nurses and Counsellors working group to create and publish a position paper on opportunistic genomic screening on behalf of British genetic counsellors; invited Board moderator for the registration of genetic counsellors in the UK; elected committee member of the Association of Genetic Nurses and Counsellors; invited chair at the American Society Human Genetics conference in Montreal, 2011). Joint editor on an Oxford University Press book on transcultural genetic counselling: 'Getting the Message across: communication with diverse populations in Clinical Genetics' (2013).

Led on the design of 2 day course specifically for genetic counsellors: 'Genomic counselling for genetic counsellors' as part of the Wellcome Trust Scientific Courses group. Course to run July 2015.

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Honorary Researcher

2010-2015

The Ethox Centre, Department of Public Health, University of Oxford, UK

Visiting Fellow

Public Health Genomics Foundation, Cambridge, UK

2013 - present

http://www.phgfoundation.org

Invited member of the steering group advising the 'Realising Genomics in Clinical Practice' think tank project influencing the implementation of clinical sequencing in health services.

Visitng Fellowship

Brocher Foundation, Geneva, Switzerland

August 2011

http://www.brocher.ch

Awarded a highly competitive residency fellowship to spend 1 month at the Brocher Foundation. Spent time editing a book: 'Getting the message across. Published by Oxford University Press'.

2005 - 2009

Chief and Principal Investigator

Consultant Research Genetic Counsellor

Institute of Medical Genetics, Cardiff University, Cardiff, UK

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​Created, designed and ran a British research project to gather attitudes from deaf and hard of hearing people towards various issues surrounding access to genetic counselling services. Quantitative and qualitative research methods were applied: completed postal questionnaires were received from 1000+ people and 30 people were interviewed by our research associate, Dr Steve Emery, who is a prominent Deaf academic, Steve conducted filmed interviews in British Sign Language with research participants. The project resulted in the creation of guidelines on best practice for working with deaf patients within UK Clinical Genetics services distributed to every genetic health professional in the UK plus prominent health professionals working with d/Deaf individuals internationally. The best practice guidelines were written into a booklet together with a DVD containing a British Sign Language transation. A public engagement one-day conference was delivered together with various peer reviewed publications and a book published with Cambridge University Press. Core research funding was obtained from the NIHR (£286k) together with 3 additional small grants to support the creation of the guidelines booklet and DVD and one-day conference. Fixed term contract ended 31/12/09.

Final project report (click here)

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As part of role as vice-chair of the Genetic Counsellor Registration Board (GCRB) co-wrote the UK Registration of Overseas Genetic Counsellors policy as well as the Accreditation of MSc Genetic Counselling Courses policy which have been ratified and are currently in use by the GCRB.  Mentored and taught students on the MSc Genetic Counselling course at Cardiff University.

2001 - 2005

Lead Cancer Genetic Counsellor (equivalent to Principal Genetic Counsellor)

East Anglia Regional Genetics Service, Addenbrooke’s Hospital, Cambridge, UK​​

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Hospital-based clinical work seeing patients concerned about various different genetic conditions, specialised in breast/ovarian cancer. Translated complex genetic information into lay language often in high-pressure, emotionally-charged situations. Identified the vital need for psychological support of staff, so sourced and implemented counselling supervision with an external therapist (which is still in place for staff today). Co-wrote the UK policy on the counselling supervision of genetic counsellors and the Mentoring Framework for sign-off mentors involved in supporting genetic counsellor registration, these documents have been ratified and turned into policy by the Genetic Counsellor Registration Board (UK and Republic of Ireland). Co-wrote the training guidelines for genetic counsellors at Addenbrooke’s Hospital, mentored trainee genetic counsellors and acted as an assessor for the Genetic Counsellor Registration Board​. Set up a genetic counsellor research group and ran a research project to evaluate the experience of supervision, using an action research methodology. Wrote up this work for publication and also published a commentary on the GCRB policy on supervision. Also published work on transcultural genetic counselling.

Member of the clinical review panel appointed by the Site Specific Breast Group for the West Anglia Cancer Network (WACN), responsible for updating clinical protocols for WACN (2004-2005). UK representative on GENDEAF European Concerted Action group on Psychosocial Issues Relating to Genetic Deafness (2002 - 2006), as part of this contributed to the creation of international guidelines for the management of deafness in clinic. Associate Lecturer at Homerton School of Health Studies, Cambridge University (2001-2005). Co-organised a Masters level course on cancer genetics for nurses, lectured to students, wrote and marked exam papers. Organised study day for nurses across East Anglia on breast cancer.

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1999 - 2001

General Genetic Counsellor

Department of Clinical Genetics, St. James’s Hospital, Leeds, UK

​Worked with a whole variety of patient groups to deliver specialist genetic information whilst also offering psychological support and follow up. Patients included: people who were terminally ill, people choosing to have predictive testing for inherited cancers, couples who chose to have a late termination of pregnancy due to foetal abnormality, those who had a proven genetic predisposition to develop a serious, life-threatening condition. Specialised in genetic counselling for deafness.

1996 - 1999

Research Fellow and Genetic Counsellor

St James’s Hospital, Leeds and University of Leeds​

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Awarded £100k personal fellowship from NHS R+D to undertake PhD in Genetics and Psychology. This PhD work was groundbreaking in that it was the first to publish on the attitudes of deaf parents towards pre-natal genetic testing for deafness, containing data to support the active selection of deaf embryos. These findings contributed signficantly towards discussion about bioethics within medicine and now the choice to have a 'disabled' child is discussed in most MSc genetic counselling training programmes. See publications list for full list of book chapters, peer reviewed articles and conferences presentations on this work, spanning many years beyond the end of the PhD.

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​1995 - 1996

Research Genetic Counsellor

Research School of Medicine, University of Leeds​ 

Identified and collected families with inherited deafness, contributed to international collaboration that identified the Connexin 26/GJB2 deafness gene as well as an understanding of how Cx26 impacts on phenotype.