Professor Marion McAllister
(she/they)

Personal Chair

: Available for postgraduate supervision

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 Sca le 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.

Date
Type

2025

Yang, S., Chang, Y. J., Kim, K. O., Lee, B. H., Kong, S., McAllister, M. and Choi, I. H. 2025. Cross‐cultural validation of the genetic counseling outcome scale in Korea. Journal of Genetic Counseling 34(2), article number: e1961. (10.1002/jgc4.1961)
Pestoff, R., Danielsson, H., McAllister, M., Johansson, P. and Gunnarsson, C. 2025. Translation, cross‐cultural adaptation, and preliminary validation of a patient‐reported outcome measure for genetic counseling outcomes in Sweden. Journal of Genetic Counseling 34(1), article number: e1896. (10.1002/jgc4.1896)

2021

Ting, M. S. O., Clarke, A. and McAllister, M. 2021. Assessing sensitivity to change of the genomics outcome scale (GOS). Journal of Genetic Counseling 30(6), pp. 1767-1772. (10.1002/jgc4.1429)

2020

Atkins, C., McAllister, M. and Greenwood, S. 2020. Face to face vs. blended learning: What are the relative merits?. The British Student Doctor Journal 4(3), pp. 25-27. (10.18573/bsdj.198)
Segundo-Ribeiro, M., Bacals, B. T., Alvarenga, W. d. A., Nascimento, L. C., McAllister, M. and Floria-Santos, M. 2020. Adaptation and preliminary validation of the genetic counseling outcome scale (GCOS-24) in a Brazilian genetic counselling setting. European Journal of Medical Genetics 63, article number: 104018. (10.1016/j.ejmg.2020.104018)
Yuen, J. et al. 2020. Evaluating empowerment in genetic counseling using patient-reported outcomes. Clinical Genetics 97(2), pp. 246-256. (10.1111/cge.13646)

2019

Grant, P. E., Pampaka, M., Payne, K., Clarke, A. and McAllister, M. 2019. Developing a short-form of the Genetic Counselling Outcome Scale: The Genomics Outcome Scale. European Journal of Medical Genetics 62(5), pp. 324-334. (10.1016/j.ejmg.2018.11.015)

2018

Muñoz-Cabello, P. et al. 2018. Translation and cross-cultural adaptation with preliminary validation of GCOS-24 for use in Spain. Journal of Genetic Counselling 27(3), pp. 732-743. (10.1007/s10897-017-0154-z)

2017

Costal Tirado, A., McDermott, A. M., Thomas, C., Ferrick, D., Harris, J., Edwards, A. and McAllister, M. 2017. Using patient-reported outcome measures for quality improvement in clinical genetics: an exploratory study. Journal of Genetic Counseling 26(5), pp. 1017-1028. (10.1007/s10897-017-0079-6)
Davison, N. et al. 2017. Exploring the feasibility of delivering standardized genomic care using ophthalmology as an example. Genetics in Medicine 19(9), pp. 1032-1039. (10.1038/gim.2017.9)
Diness, B. R., Overbeck, G., Hjortshøj, T. D., Hammer, T. B., Timshel, S., Sørensen, E. and McAllister, M. 2017. Translation and adaptation of the genetic counselling outcome scale (GCOS-24) for use in Denmark. Journal of Genetic Counselling, pp. 1-10. (10.1007/s10897-017-0086-7)
Hooker, G. W., Babu, D., Myers, M. F., Zierhut, H. and McAllister, M. 2017. Standards for the reporting of genetic counseling interventions in research and other studies (GCIRS): an NSGC task force report. Journal of Genetic Counselling 26(3), pp. 355-360. (10.1007/s10897-017-0076-9)

2016

Eisler, I. et al. 2016. Training genetic counsellors to deliver an innovative therapeutic intervention: their views and experience of facilitating multi-family discussion groups. Journal of Genetic Counselling 26(2), pp. 199-214. (10.1007/s10897-016-0008-0)
Eisler, I. et al. 2016. Developing an intervention to facilitate family communication about inherited genetic conditions, and training genetic counsellors in its delivery. European Journal of Human Genetics 24(6), pp. 794-802. (10.1038/ejhg.2015.215)
Brunstrom, K., Murray, A. and McAllister, M. 2016. Experiences of women who underwent predictive BRCA 1/2 mutation testing before the age of 30. Journal of Genetic Counselling 25(1), pp. 90-100. (10.1007/s10897-015-9845-5)

2015

Bravo, P., Edwards, A. G., Barr, P. J., Scholl, I., Elwyn, G. and McAllister, M. 2015. Conceptualising patient empowerment: a mixed methods study. BMC Health Services Research 15, article number: 252. (10.1186/s12913-015-0907-z)
, . 2015. Valuing preferences for the process and outcomes of clinical genetics services: A pilot study. The Patient - Patient-Centered Outcomes Research 9(2), pp. 135-147. (10.1007/s40271-015-0133-0)

2014

McAllister, M. and Dearing, A. 2014. Patient reported outcomes and patient empowerment in clinical genetics services. Clinical Genetics 88(2), pp. 114-121. (10.1111/cge.12520)

2013

Payne, K., McAllister, M. and Davies, L. M. 2013. Valuing the economic benefits of complex interventions: when maximising health is not sufficient. Health Economics 22(3), pp. 258-271. (10.1002/hec.2795)
Coombs, R. et al. 2013. Understanding the impact of genetic testing for inherited retinal dystrophy. European Journal of Human Genetics 21(11), pp. 1209-1213. (10.1038/ejhg.2013.19)

2012

McAllister, M., Dunn, G., Payne, K., Davies, L. and Todd, C. 2012. Patient empowerment: The need to consider it as a measurable patient-reported outcome for chronic conditions. BMC Health Services Research 12(1), pp. 157-164. (10.1186/1472-6963-12-157)
McAllister, M., Wood, A. M., Dunn, G., Shiloh, S. and Todd, C. 2012. The perceived personal control (PPC) questionnaire: Reliability and validity in a sample from the United Kingdom. American Journal of Medical Genetics Part A 158A(2), pp. 367-372. (10.1002/ajmg.a.34374)

2011

Myring, J., Beckett, W., Jassi, R., Roberts, T., Sayers, R., Scotcher, D. and McAllister, M. 2011. Shock, adjust, decide: reproductive decision making in Cystic Fibrosis (CF) carrier couples - a qualitative study. Journal of Genetic Counseling 20(4), pp. 404-417. (10.1007/s10897-011-9363-z)
McAllister, M., Wood, A. M., Dunn, G., Shiloh, S. and Todd, C. 2011. The genetic counseling outcome scale: a new patient-reported outcome measure for clinical genetics services. Clinical Genetics 79(5), pp. 413-424. (10.1111/j.1399-0004.2011.01636.x)
McAllister, M., Dunn, G. and Todd, C. 2011. Empowerment: qualitative underpinning of a new clinical genetics-specific patient-reported outcome. European Journal of Human Genetics 19(2), pp. 125-130. (10.1038/ejhg.2010.160)

2008

McAllister, M., Payne, K., MacLeod, R., Nicholls, S., Donnai, D. and Davies, L. 2008. Patient empowerment in clinical genetics services. Journal of Health Psychology 13(7), pp. 895-905. (10.1177/1359105308095063)
McAllister, M., Payne, K., MacLeod, R., Donnai, D. and Davies, L. 2008. Patient empowerment in clinical genetics services: a new model developed from qualitative research [Abstract]. Psychology and Health 23(S1), pp. 179. (10.1080/08870440802299543)
Payne, K., Nicholls, S., McAllister, M., MacLeod, R., Donnai, D. and Davies, L. M. 2008. Outcome measurement in clinical genetics services: a systematic review of validated measures. Value In Health 11(3), pp. 497-508. (10.1111/j.1524-4733.2007.00259.x)
McAllister, M., Payne, K., MacLeod, R., Nicholls, S., Donnai, D. and Davies, L. 2008. What process attributes of clinical genetics services could maximise patient benefits?. European Journal of Human Genetics 16(12), pp. 1467-1476. (10.1038/ejhg.2008.121)
McAllister, M., Payne, K., MacLeod, R., Donnai, D. and Davies, L. 2008. Developing outcome measures for clinical genetics services: a triangulation approach [Abstract]. Psychology and Health 23(S1), pp. 179-180. (10.1080/08870440802299543)

2007

McAllister, M., Davies, L., Payne, K., Nicholls, S., Donnai, D. and McLeod, R. 2007. The emotional effects of genetic disease: implications for clinical genetics. American Journal of Medical Genetics Part A 143A(22), pp. 2651-2661. (10.1002/ajmg.a.32013)
Payne, K., Nicholls, S., McAllister, M., MacLeod, R., Ellis, I., Donnai, D. and Davies, L. 2007. Outcome measures for clinical genetics services: A comparison of genetics healthcare professionals and patients' views. Health Policy 84(1), pp. 112-122. (10.1016/j.healthpol.2007.03.005)
McAllister, M., Payne, K., Nicholls, S., MacLeod, R., Donnai, D. and Davies, L. M. 2007. Improving service evaluation in clinical genetics: Identifying effects of genetic diseases on individuals and families. Journal of Genetic Counseling 16(1), pp. 71-83. (10.1007/s10897-006-9046-3)

2003

McAllister, M. 2003. Personal theories of inheritance, coping strategies, risk perception and engagement in hereditary non-polyposis colon cancer families offered genetic testing. Clinical Genetics 64(3), pp. 179-189. (10.1034/j.1399-0004.2003.00133.x)

2002

McAllister, M. 2002. Predictive genetic testing and beyond: A theory of engagement. Journal of Health Psychology 7(5), pp. 491-508. (10.1177/1359105302007005628)
McAllister, M., O'Malley, K., Hopwood, P., Kerr, B., Howell, A. and Evans, D. G. R. 2002. Management of women with a family history of breast cancer in the North West Region of England: training for implementing a vision of the future. Journal of Medical Genetics 39(7), pp. 531-535. (10.1136/jmg.39.7.531)

2001

McAllister, M. 2001. Grounded theory in genetic counseling research. Journal of Genetic Counseling 10(3), pp. 233-250. (10.1023/A:1016628408498)

1998

McAllister, M., Evans, D. G., Ormiston, W. and Daly, P. 1998. Men in breast cancer families: a preliminary qualitative study of awareness and experience. Journal of Medical Genetics 35(9), pp. 739-744. (10.1136/jmg.35.9.739)

1990

McAllister, M., Kelly, C. T., Doyle, E. and Fogarty, W. M. 1990. The isomaltulose synthesising enzyme system of Serratia plymuthica. Biotechnology Letters 12(9), pp. 667-672. (10.1007/BF01088191)

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)

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.

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

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

Contact Details

McAllisterMF@cardiff.ac.uk
+44 29225 10811
Neuadd Meirionnydd, Room 918K, University Hospital of Wales, Heath Park, Cardiff, CF14 4YS

Professor Marion McAllister (she/they)

Overview

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