Yr Athro Marion McAllister
Cadeirydd Personol
- McAllisterMF@caerdydd.ac.uk
- +44 29225 10811
- Neuadd Meirionnydd, Ystafell 918K, Ysbyty Athrofaol Cymru, Parc y Mynydd Bychan, Caerdydd, CF14 4YS
- Ar gael fel goruchwyliwr ôl-raddedig
Trosolwyg
I am registered genetic counsellor (GCRB and EBMG), with a PhD in Social Science from Cambridge University (1999), and I am currently Programme Director for the MSc in Genetic and Genomic Counselling at Cardiff University. 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 is being translated into Dutch, Danish, Portuguese, Spanish and Japanese and is being used to evaluate clinical genetics services in practice, and new interventions in research in the UK and internationally. I am currently Education Adviser to the UK Genetic Counsellor Registration Board.
Cyhoeddiad
2023
- Redondo, L. and McAllister, M. 2023. Cross‐cultural adaptation of the Genetic Counseling Outcome Scale (GCOS‐24) for use in Canada: a qualitative study. Journal of Genetic Counseling (10.1002/jgc4.1771)
- O'Donoghue, E., McAllister, M. and Rizzo, R. 2023. The experiences of families receiving a diagnosis of 22q11.2 deletion syndrome in Ireland. Journal of Genetic Counseling 32(3), pp. 618-634. (10.1002/jgc4.1667)
2022
- Lleuger Pujol, R. et al. 2022. Further validation and psychometric properties of the Spanish adaptation of the Genetic Counseling Outcome Scale. Journal of Genetic Counseling 31, pp. 71-81. (10.1002/jgc4.1452)
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
- 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)
- 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)
- 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. Developing outcome measures for clinical genetics services: a triangulation approach [Abstract]. Psychology and Health 23(S1), pp. 179-180. (10.1080/08870440802299543)
- 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)
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)
Erthyglau
- Redondo, L. and McAllister, M. 2023. Cross‐cultural adaptation of the Genetic Counseling Outcome Scale (GCOS‐24) for use in Canada: a qualitative study. Journal of Genetic Counseling (10.1002/jgc4.1771)
- O'Donoghue, E., McAllister, M. and Rizzo, R. 2023. The experiences of families receiving a diagnosis of 22q11.2 deletion syndrome in Ireland. Journal of Genetic Counseling 32(3), pp. 618-634. (10.1002/jgc4.1667)
- Lleuger Pujol, R. et al. 2022. Further validation and psychometric properties of the Spanish adaptation of the Genetic Counseling Outcome Scale. Journal of Genetic Counseling 31, pp. 71-81. (10.1002/jgc4.1452)
- 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)
- 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)
- 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)
- 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)
- 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)
- 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)
- 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)
- 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)
- 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)
- 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)
- 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)
- 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)
- 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)
- 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. Developing outcome measures for clinical genetics services: a triangulation approach [Abstract]. Psychology and Health 23(S1), pp. 179-180. (10.1080/08870440802299543)
- 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., 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)
- 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)
- 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)
- McAllister, M. 2001. Grounded theory in genetic counseling research. Journal of Genetic Counseling 10(3), pp. 233-250. (10.1023/A:1016628408498)
- 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)
- 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)
Ymchwil
The Genetic Counselling Outcome Scale (GCOS-24), the novel Patient Reported Outcome Measure that I developed and validated during my MRC Fellowship (2007-10), was used to evaluate performance of seven of the 22 UK NHS Regional Clinical Genetics centres in 2011-13, supported by the London NHS Specialised Commissioning Group. Sandra Tribe, Senior Commissioning Manager, London Specialised Commissioning Group said about the exercise: “The view from the London Specialised Commissioning Group … is that in the past it has been difficult to identify and quantify outcome measures because (clinical) genetics is either part of an overall treatment pathway or it advises patients on how to manage and live with their genetic condition. As such, outcome measures have not been sophisticated enough to measure their outputs. The ability to identify a range of tailored specific outcomes is welcomed and will enable commissioners to procure high quality and cost effective services which benefit patients so they can make more informed choices about their lifestyle.”
This work demonstrated, for the first time, that NHS clinical genetics services can deliver significant measurable patient benefits, and identified some further work needed to optimise methods for implementation in routine NHS practice. GCOS-24 is currently being translated into Dutch, Danish, Portuguese, Spanish and Japanese. GCOS-24 was used in a larger service evaluation exercise in the NHS All Wales Medical Genetics Service (AWMGS) in 2014-15, and the data has been used by the clinical team to explore usefulness for continuous service quality improvement in AWMGS. This work was supported by seed corn funding from Cardiff Business School. This body of work demonstrates translation of research findings towards clinical applications.
I am also involved with research led by Prof Alison Metcalfe, Kings College London, to develop a novel intervention to support family communication about inherited genetic conditions, funded by NIHR.
Addysgu
Cardiff University MSc in Genetic Counselling:
Since joining Cardiff University in 2011, I have provided leadership to a team of academics, clinicians and administrative staff to successfully deliver the MSc in Genetic Counselling. This includes ensuring that the MSc course meets the (often competing) demands of a wide range of different stakeholders, both internal (course lecturers & tutors, dissertation supervisors, Graduate Studies Office, University Registry) and external (placement providers, Genetic Counsellor Registration Board (GCRB), external examiner, NHS clinical colleagues at the All Wales Medical Genetics Service.
In this role, I prepare and deliver teaching within a number of modules. I set, mark and provide feedback on student assessments. In 2015, I led the MSc team in introducing GradeMark. I am module lead for ‘Introduction to Research Methods in Genetic Counselling’ and 'MSc disseration', and supervise one or two MSc student dissertation projects in each year group. Student feedback has been very positive. I also play a key role in recruitment, selection and induction of MSc students and staff, and I provide mentorship to both MSc students and staff.
I led on achievement of GCRB (Genetic Counsellor Registration Board) accreditation of the MSc in Genetic Counselling in 2011, and renewal of this in 2014. I also led on achievement of EBMG (European Board of Medical Genetics) accreditation of the MSc in Genetic Counselling in 2012.
In 2014, I led on curriculum development for Cardiff University re-validation of the MSc in Genetic Counselling course, which included re-working the curriculum to ensure all modules carry 20 credits, with appropriate assessment load. I also led on implementation of the Cardiff University-wide assessment criteria in 2015.
External teaching contribution:
External to Cardiff University, I am a member of the Scientific Programme Committee for the first ever Health Education England-funded ‘Genomic Practice for Genetic Counsellors’ Wellcome Trust Scientific Course held at Wellcome Trust Genome Campus, Hinxton, UK, first held in July 2015 and repeated regularly.
In 2015, I was invited by Health Education England and the UK Association for Genetic Nurses & Counsellors (the UK professional body for genetic counsellors) to be a member of a Curriculum Development Group to develop a new curriculum to support training of genetic counsellors in the UK. The curriculum is developed within the Modernising Scientific Careers ‘Scientist Training Programme’ structure, comprising an intercalated 3-year MSc course, and will be released for HEI tender in early 2016.
In March 2011, I was invited to deliver a two-week Visiting Lectureship in South Africa (expenses paid). I visited the Universities of Cape Town, Stellenbosch and Witwatersrand MSc in Genetic Counselling courses and gave a series of lectures and workshops. In addition, I delivered a keynote address at the South African Society of Human Genetics biennial congress.
Topic areas I would like to supervise in:
- Patient empowerment and patient-centred care
- Qualitative research in healthcare
- Patient-reported outcome measures
Bywgraffiad
Education and qualifications:
- 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: Cardiff University School of Medicine: Senior Lecturer in Genetic Counselling & Course Director, MSc in Genetic 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
Anrhydeddau a dyfarniadau
- 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
Aelodaethau proffesiynol
- 2016: Genetic Counsellor Registration, European Board of Medical Genetics
- 2005: Genetic Counsellor Registration, UK Genetic Counsellor Registration Board (no. 153)
- Member of Association of Genetic Nurses & Counsellors (http://www.agnc.org.uk/), the UK professional body for genetic counsellors
- Member of National Society for Genetic Counsellors (http://www.nsgc.org/), the US 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
Safleoedd academaidd blaenorol
- 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).
Pwyllgorau ac adolygu
Internal:
- 2017-ongoing: Member of the Admissions Group for the Medical School
External:
- Education Adviser, Genetic Counsellor Registration Board (GCRB). See www.gcrb.org.uk/
- Member of editorial board for Journal of Genetic Counseling (Springer, IF 2014: 2.243)
Meysydd goruchwyliaeth
- Evaluation of genetic counselling interventions
- Patient experiences of genetic counselling and/or genetic testing
- Patient experiences of living with genetic risk
Ymgysylltu
I am a regular contributor to the Wales Gene Park Schools Genetics Roadshow.
In 2011, I was invited external validation panel member for a new MSc Genetic Counselling at Independent Studies of Science & Technology College, Athens, Greece, developed under franchise to University of Hertfordshire. In 2017, I was invited external validation panel member for a new MSc Genetic Counselling at Qatar University.
In 2012, my article for families affected by genetic conditions “Quality assessment in clinical genetics services” was selected for publication in the newsletter of Genetic Alliance UK, an alliance of patient organisations supporting families affected by genetic conditions. In 2012, my invited book chapter “Genetic Counselling” was published in the Ehlers Danlos Support Group (EDS) booklet “The Management of Ehlers-Danlos Syndrome”.