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Marion McAllister

Professor Marion McAllister

(she/they)

Personal Chair

School of Medicine

Email
McAllisterMF@cardiff.ac.uk
Telephone
+44 29225 10811
Campuses
Neuadd Meirionnydd, Room 918K, University Hospital of Wales, Heath Park, Cardiff, CF14 4YS
Users
Available for postgraduate supervision

Overview

I am a registered genetic counsellor (EBMG), with a PhD in Social Science from Cambridge University (1999), and I was Programme Director for the MSc in Genetic and Genomic Counselling at Cardiff University from 2011 to 2023.

I have a special interest in patient empowerment, and a distinguished track record in genetic counselling research. My research aims to improve how clinical genetics services respond to the needs of families with genetic conditions. I developed and validated a new Patient Reported Outcome Measure (Genetic Counselling Outcome Scale GCOS-24) for clinical genetics services, which captures patient benefits conceptualised as patient empowerment. This led to my interest in patient empowerment more generally, and I have also published research on patient empowerment in chronic disease. Since publication in 2011, GCOS-24 has been translated into Dutch, Danish, Korean, Portuguese, Spanish, Swedish and Japanese and is being used to evaluate clinical genetics services in practice, and new interventions in research in the UK and internationally.

I was Education Adviser to the UK Genetic Counsellor Registration Board (GCRB, http://www.gcrb.org.uk) from January 2012 to January 2018. The GCRB establishes, maintains and improves standards of practice in genetic counselling to assure public safety in the UK and Republic of Ireland. My GCRB role included lead academic moderator at the annual ‘marking day’, when portfolios submitted for GCRB registration are assessed for academic content, ensuring portfolios meet QAA Level 7.  I was a member of the European Board of Medical Genetics (EBMG) (https://www.eshg.org/408.0.html) from 2017 to 2020. 

Publication

2024

2023

2022

2021

2020

2019

2018

2017

2016

2015

2014

2013

2012

2011

2008

2007

2003

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2001

1998

1990

Articles

Research

The Genetic Counselling Outcome Scale (GCOS-24), the novel Patient Reported Outcome Measure that I developed and validated during my MRC Fellowship (2007-10), is being used to evaluate clinical genetics and genetic counselling services in the UK and internationally, and is also used in research. GCOS-24 has been translated into Dutch, Danish, Korean, Portuguese, Spanish, Swedish and Japanese. My current research focuses on improving how clinical genetics services respond to the needs of patients and families affected by genetic conditions. I am happy to work with international colleagues on efforts to translate and cross-culturally adapt both the Genetic Counselling Outcome Scale and the Genomics Outcomes Scale for use in other languages / cultures. For those interested in this work, here are some useful articles:

Articles reporting translation and adaptation of the Genetic Counselling Outcome Scale for use in other languages / cultures: Brazil, Canada, Denmark, Korea, Spain 1, Spain 2, Sweden

Guidelines on translation and cross-cultural adaptation of questionnaires: Beaton et al. (2000), Wild et al. (2005); Cognitive interview method for assessing readability and understandability of translated questionnaires: Irwin et al. (2009)

 

Teaching

Cardiff University MSc in Genetic (and Genomic) Counselling:

I currently lead the programme's Research Methods module (MET824) and the Dissertation module (MET820).

Topic areas I would like to supervise in:

  • Patient empowerment and patient-centred care
  • Qualitative research in healthcare
  • Studies translating and adapting both the Genetic Counselling Outcome Scale and the Genomics Outcomes Scale for use in other languages / cultures.

Biography

Education and qualifications:

  • 2019: Senior Fellow of the Higher Education Academy
  • 2000: PhD (Social Science), University of Cambridge
  • 1994: MSc (Genetic Counselling), University of Manchester
  • 1989: MSc (Industrial Microbiology), University College Dublin
  • 1985: BA (Mod) Natural Science: Genetics, Trinity College Dublin

Career Overview:

  • 2011 - ongoing: Cardiff University School of Medicine: Former Programme Director and current Dissertation Lead, MSc in Genetic (and Genomic) Counselling.
  • 2011-2016: Cardiff & Vale University Health Board (0.4WTE) Registered Genetic Counsellor.
  • 2010 – 2011: Wellcome Trust Research Fellow, Medical Genetics Research Group, School of Biomedicine, The University of Manchester, Fixed-term.
  • 2007 - 2010: MRC Research Fellow, Medical Genetics Research Group, School of Biomedicine, The University of Manchester, Fixed-term.
  • 2007 – 2011: Honorary Registered Genetic Counsellor, Genetic Medicine, Central Manchester University Hospitals NHS Foundation Trust (CMFT).
  • 2003 – 2007 (0.5WTE): Research fellow (Genetic Counselling), Nowgen (North West Genetics Knowledge Park). Fixed-term.
  • 1999 – 2003 (1.0WTE); 2003 – 2007 (0.5WTE): Macmillan Genetic Counsellor, Central Manchester University Hospitals NHS Foundation Trust. Substantive.
  • Apr – Jun 1999: Cancer Genetics Course Co-Ordinator, Central Manchester Healthcare NHS Trust. Fixed term (0.6WTE).
  • 1996 – 1999: PhD studentship (Cancer Research UK), University of Cambridge Centre for Family Research, Faculty of Social and Political Sciences.
  • Jun – Oct 1996: Genetic Associate. Central Manchester Healthcare NHS Trust. Fixed term contract.
  • 1990–1994: Change Management Consultant. Andersen Consulting (now Accenture) London

Honours and awards

  • 2019: 'Genetic Counsellor in Residence', MSc in Genetic Counselling programme, University of Melbourne, Australia.
  • 2019: Visiting Lecturer, MSc in Genetic Counselling programme, University of Siena, Italy.
  • 2017: Recipient of the National Society of Genetic Counselors (NSGC) International Leader Award. NSGC is the professional body representing genetic counsellors in North America.
  • 2011: Visiting Lecturer, South Africa, Universities of Witwasersrand, Cape Town and Stellenbosch MSc in Genetic Counselling courses.
  • 2011: National Institute for Social Care & Health Research / Academic Health Science Centre Clinical Research Time Fellowship (Cardiff & Vale University Health Board). Value: ~£68,000
  • 2010: Wellcome Trust VIP Bridging Funding awarded by The University of Manchester Faculty of Medical and Human Sciences in internal competition. Value: £9,480
  • 2007: MRC Post-Doctoral Special Training Fellowship in Health Services Research. Value: £318,770
  • 2007: Health R&D North West Training and Mentoring (TRAM) scheme to support Health Services Research training and mentoring. Value: £4,500
  • 2006: UK Resource Centre for Women in SET travel bursary to present at the International Congress of Human Genetics, Brisbane, Australia. Value: £990
  • 1984: Irish-American Foundation undergraduate travel award to work in a research laboratory at University of Michigan, USA investigating cell division cycle genes in S cerevisiae. Value: £1,000

Professional memberships

  • 2016: Genetic Counsellor Registration, European Board of Medical Genetics
  • Member of Association of Genetic Nurses & Counsellors (http://www.agnc.org.uk/), the UK professional body for genetic counsellors
  • Member of British Society for Genetic Medicine (http://www.bsgm.org.uk/), an independent body representing UK human genetics professionals

Academic positions

  • 2010 – 2011: Wellcome Trust Research Fellow, Medical Genetics Research Group, School of Biomedicine, The University of Manchester, Fixed-term.
  • 2007 - 2010: MRC Research Fellow, Medical Genetics Research Group, School of Biomedicine, The University of Manchester
  • 2003 – 2007: Post-doctoral Research fellow (Genetic Counselling), Nowgen (North West Genetics Knowledge Park).

Committees and reviewing

Internal:

  • 2017-ongoing: Member of the Admissions Group for the Medical School, which sets and implements the policy for admission to the Cardiff University Medical School

 

Supervisions

  • Evaluation of genetic counselling interventions
  • Patient experiences of genetic counselling and/or genetic testing
  • Patient experiences of living with genetic risk

Engagement

I am a regular contributor to the Wales Gene Park Schools Genetics Roadshow.