Dr Pauline McCormack
- Email: firstname.lastname@example.org
- Telephone: +44 (0) 191 208 3261
- Address: PEALS (Policy, Ethics & Life Sciences) Research Centre
4th Floor Claremont Bridge
Newcastle upon Tyne
Roles and Responsibilities
Pauline is a medical sociologist with a background in education, social policy and participatory methods. Her research encompasses: patient experiences of medical technologies, translational research and clinical trials; patient participation; and bioethics, with particular interests in notions of power and the patient voice @paulinemacco
She has worked empirically on several rare disease projects such as RD-CONNECT, 100,000 Genomes Project and TREAT-NMD. She is also working on 'When technology fails patients', exploring the experiences of patients with failed metal-on-metal hip replacements @metalhip_ncl
Publications: e-prints service
EdD Education, Newcastle University 'Fortress Education: a study of widening participation at an elite UK university'
MSc Computing Science, Newcastle University
BA (Hons) Classical Studies, Newcastle University
- Senior Research Associate, PEALS, Newcastle University
- Lecturer, Open University
- Curriculum Development Officer, Newcastle University
- Production Manager, Lily Hill Theatre Company, Galway
- Research Associate, Institute of Education, London
- SINE Project Director, Newcastle University
- Learning Technology Co-ordinator, Newcastle University
- Humanities Computing Project Manager, Glasgow University
Pauline's publications are available at from Newcastle University's e-prints service.
Pauline's research interests are in medical sociology particularly, social and ethical approaches to new technologies, patient activism, and how policy translates to individuals. She often works in the field of rare diseases, investigating patient/patient advocates' experiences of new drug developments and technologies, particularly genomics.
European Commission Expert Reviewer on patient participation 2017-
Co-lead (with Simon Woods) Genomics England Patient Involvement implementation group 2015-
Invited expert: Nuffield Council on Bioethics ‘Neurotechnologies and registries’ workshop 2013, London, UK
Invited presenter: Nuffield Council on Bioethics ‘Children and research’ working party 2013, London, UK
Invited speaker: Evidence Live13 "Are patients just pound signs?": perspectives of people with failed metal on metal hip implants, Oxford, UK
Chairperson Rare Disease Patient and Ethics Council 2012-
Speaker: expert workshop for newborn screening in Duchenne muscular dystrophy, 2012, Naarden, Netherlands
Submission/publication of evidence to UK Science and Technology Select Committee Inquiry on Medical Device Regulation, 2012, London, UK
2016 Wellcome Trust Small Grant £5,000
2015 Faculty Small Bids & SAgE £8,000
2013 GPS Research Fund & MSE £4,000
2011 Faculty Research Fund £3,800; EPSRC Impact Fund £36,000 (PI T J Joyce)
2010 GPS Technical Training £500
2004 PI on SINE Project, £390,000 from Heritage Lottery Fund
Current teaching includes lectures on:
MSc Genomic Medicine: Ethical, Legal and Social Issues in Applied Genomics
Sociology module Investigating the Body
Bioethics for Bioengineering - Newcastle University
Lecturer on MA Educational Enquiry - Open University
Module Leader Student Tutoring Masters level - Newcastle University
I have 20 years of experience teaching in education; historical/humanities computing; learning technologies and of supervising Masters' dissertations.
- McCormack P, Kole A, Gainotti S, Mascalzoni D, Molster C, Lochmüller H, Woods S. 'You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research. European Journal of Human Genetics 2016, 30.
- McCormack P, Woods S. New recommendation on biological materials could hamper muscular dystrophy research. PLoS Currents 2016, 8(MuscularDystrophy).
- Gainotti S, Turner C, Woods S, Kole A, McCormack P, Lochmüller H, Riess O, Straub V, Posada M, Taruscio D, Mascalzoni D. Improving the informed consent process in international collaborative rare disease research: Effective consent for effective research. European Journal of Human Genetics 2016, 1–7.
- Mascalzoni D, Dove ES, Rubinstein Y, Dawkins HJS, Kole A, McCormack P, Woods S, Riess O, Schaefer F, Lochmuller H, Knoppers BM, Hansson M. International Charter of principles for sharing bio-specimens and data (vol 23, pg 721, 2015). European Journal of Human Genetics 2016, 24(7), 1096-1096.
- McCormack P. Rare Disease, Big Data: the views of rare disease patients on systems for sharing data and biospecimens. In: European Conference on Rare Diseases and Orphan Products (ECRD 2016). 2016, Edinburgh: EURORDIS.
- McCormack P, Kole A, Turner C, Woods S. Consent, collaboration and cures:the views of rare disease patients on systems for sharing data and biospecimens. In: Rare Disease Joint Projects Meeting 2015. 2015.
- Wienroth M, McCormack P, Joyce T. Precaution, governance and the failure of medical implants: the ASR(TM) hip in the UK. Life Sciences, Society and Policy 2014, 10(19), 16.
- Woods S, Hagger LE, McCormack P. Therapeutic Misconception: Hope, Trust and Misconception in Paediatric Research. Health Care Analysis 2014, 22(1), 3-21.
- McCormack P, Kole A. Setting up strategies: patient inclusion in biobank and genomics research in Europe. In: 7th European Conference on Rare Diseases and Orphan Products. 2014, Berlin, Germany: BioMed Central Ltd.
- McCormack P. Rare Disease Patient and Ethics Council (RD-PEC). In: Joint Rare Disease Projects Meeting. 2014.
- Woods S, McCormack P. Disputing the ethics of research: the challenge from bioethics and patient activism to the interpretation of the Declaration of Helsinki in clinical trials. Bioethics 2013, 27(5), 243-250.
- McCormack P, Woods S, Aartsma-Rus A, Hagger L, Herczegfalvi A, Heslop E, Irwin J, Kirschner J, Moeschen P, Muntoni F, Ouillade M-C, Rahbek J, Rehmann-Sutter C, Rouault F, Sejersen T, Vroom E, Straub V, Bushby K, Ferlini A. Guidance in social and ethical issues related to clinical, diagnostic care and novel therapies for hereditary neuromuscular rare diseases: "translating" the translational. 2013. Available at: http://dx.doi.org/10.1371/currents.md.f90b49429fa814bd26c5b22b13d773ec.
- McCormack P, Wienroth M, Hopkins C, Joyce T. A mile in my shoes: the experiences of ASR hip patients and their families. In: 14th EFORT Congress 2013. 2013, Istanbul, Turkey: European Federation of National Associations of Orthopaedics and Traumatology.
- McCormack P, Woods S, Hagger L. The therapeutic misconception, decision making and informed consent: the ethics of trial participation for neuromuscular disorders. Neuromuscular Disorders 2011, 22(2), 191-192.
- Aartsma-Rus A, Cosigned by, Furlong P, Vroom E, van Ommen GJ, Niks E, Straathof C, Verschuuren J, Ferlini A, Hagger L, Heslop E, Karcagi V, Kirschner J, McCormack P, Moeschen P, Muntoni F, Ouillade MC, Rahbeck J, Rehmann-Sutter C, Rouault F, Sejersen T, Woods S. The risks of therapeutic misconception and individual patient (n = 1) “trials” in rare diseases such as Duchenne dystrophy. Neuromuscular Disorders 2011, 21(1), 13-15.
- McCormack P. Planning for the future with Duchenne muscular dystrophy – identifying support structures and approaches that can help: a review of the literature. In: TREAT-NMD International. 2011, Geneva, Switzerland: TREAT-NMD.
- McCormack P, Woods S. Ethics at the edge of translation: the work of the TREAT-NMD Project Ethics Council. In: TREAT-NMD International. 2011, Geneva, Switzerland: TREAT-NMD.
- McCormack P, Woods S. Patient activism and the ethics of clinical trials: a perspective from neuromuscular disorders. In: TREAT-NMD International. 2011, Geneva, Switzerland.
- Woods S, McCormack P. Ethical issues in bio-marker research. In: TREAT-NMD International. 2011, Geneva, Switzerland: TREAT-NMD.
- Wienroth M, McCormack P, Joyce TJ. When technology fails patients: nanoparticles as a result of medical device failure. In: S.Net Annual Conference. 2011, Tempe, Arizona, USA.
- Joyce TJ, McCormack P. ‘The knee bone connected to the thigh bone’: A case study of teaching anatomy to engineering students using state-of-the-art anatomical software. In: Haghi, AK; Luppicini, R, ed. Cases on Digital Technologies in Higher Education: Issues and Challenges. Hershey, PA: IGI Global, 2010, pp.139-149.
- McCormack P. Cell therapies for Duchenne muscular dystrophy: some ethical issues for personalised medicines. In: 5th European Conference on Rare Diseases (ECRD 2010). 2010, Krakow, Poland: BioMed Central Ltd.
- Muntoni F, Contributors include, Bushby K, Heslop E, McCormack P, Woods S. The development of antisense oligonucleotide therapies for Duchenne muscular dystrophy: Report on a TREAT-NMD workshop hosted by the European Medicines Agency (EMA), on September 25th 2009. Neuromuscular Disorders 2010, 20(5), 355-362.
- McCormack P, Woods S. Ethical issues with the development of personalised medicines for rare, childhood, genetic disease: the case of Duchenne muscular dystrophy. In: Is Medical Ethics Really in the Best Interests of the Patient?. 2010, Uppsala, Sweden.
- McCormack P. Barriers to advancing clinical trials in neuromuscular disorders. In: World Alliance of Neuromuscular Diseases Associations Conference. 2010.
- Woods S, Scully JL, McCormack P, Turkmendag I. Response to report by Nuffield Council on Bioethics, Give and take? Human bodies in medicine and research: consultation summary. London: Nuffield Council on Bioethics, 2010. Available at: http://nuffieldbioethics.org/wp-content/uploads/Simon-Woods-Jackie-Leach-Scully-Pauline-McCormack-and-Ilke-Turkmendag-of-the-Policy-Ethics-and-Life-Sciences-Research-Centre.pdf.