NICHOLLS, Stuart Gordon ..... Newson, Stuart Nicholls, Beth Potter, Lindsey Sikora, Marcel Verweij, Michael ... Co-applicant (with Kristin Voigt and Garrath Williams) ..... Jamie C. Brehaut, Daryl Pullman, Robin Z. Hayeems, Keith Miller, Sari ...
Stuart Nicholls May 2016 CURRICULUM VITAE a)
NAME: NICHOLLS, Stuart Gordon
b)
DEGREES: Ph.D.,
Applied Social Statistics.
Lancaster University, UK
2010
Thesis: “Considering consent: an analysis of factors influencing parental perceptions of decisional quality in the context of newborn screening” MRes, (dist)
Applied Social Statistics.
Lancaster University, UK
2007
Thesis: “Analysis of breast cancer risk for women in the North West and implications for risk presentation.” Courses included: Statistical Inference; Generalised Linear Models; Survival (Duration) Analysis; Event History Analysis; Sampling Design; Survey Methods; Structural Equation Modelling; Methods for Missing Data; Bayesian Methods
c)
MSc,
Ethics of Health Care.
University of Liverpool, UK
2002
BSc (Hons)
Genetics
University of Leeds, UK
2000
EMPLOYMENT HISTORY: June 2015Present
Clinical Investigator, Children’s Hospital of Eastern Ontario (CHEO) Research Institute, 401 Smyth Road, Ottawa, ON, Canada, K1H 8L1
January 2015- Methodologist II, Children’s Hospital of Eastern Ontario (CHEO) Research Present Institute, 401 Smyth Road, Ottawa, ON, Canada, K1H 8L1 January 2015- Research Assistant, Department of Epidemiology & Community Medicine, Present University of Ottawa, Canada, K1H 8M5 2012 – 2015
Canadian Institutes of Health Research (CIHR) Postdoctoral Fellow, Department of Epidemiology & Community Medicine, University of Ottawa, Canada, K1H 8M5
2
d)
e)
2011 – 2012
Post-doctoral fellow/ Research Associate, CIHR Emerging Team in Genomics in Screening/ OHRI CEP Knowledge Translation, Quality and Safety Research Theme, Department of Epidemiology & Community Medicine, University of Ottawa, Canada
2010 – 2011
IDEFICS Research Associate. Politics, Philosophy & Religious Studies, Lancaster University, Lancaster, UK
2003 - 2006
User Engagement Officer (Research Associate). The North West Genetics Knowledge Park (Nowgen), University of Manchester, Manchester, UK
ACADEMIC HONOURS: Year
Awarding body
Amount
2013
Champlain Regional Stroke Network, Scientific Poster Competition Award, 2013
$50.00 CAD
2007
Centre for Excellence in Teaching and Learning (CETL), Lancaster University. Prize for Excellence in Learning
£100.00
SCHOLARLY AND PROFESSIONAL ACADEMIC ACTIVITIES: Advisory Groups April 2015 present
Member – Canadian Clinical Trials Coordinating Centre (CCTCC)/Health Canada working group on developing a pan-Canadian accreditation system for Research Ethics Boards reviewing clinical trials.
June 2004 – September 2006
Steering committee: Manchester Regional Genetic Service and Linked Trusts – Establish community-based genetics service in area of high incidence of autosomal recessive disorders; Department of Health
Membership of Review Panels January 2016 Invited peer reviewer for UK Medical Research Council (MRC): Methodology Research Panel December 2015
Invited peer reviewer for the Cochrane Cystic Fibrosis and Genetic Disorders (CFGD) Group. Protocol reviewer for “Interventions for promoting participation in shared decision-making for children with cystic fibrosis”
November 2015
Children’s Hospital of Eastern Ontario (CHEO) Research Institute; CHAMO Innovation Fund (reviewer)
July/August 2015
Nursing Best Practice Research Centre (NBPRC) WRITES – GRANTS; University of Ottawa (reviewer)
May 2015
Children’s Hospital of Eastern Ontario (CHEO) Research Institute;
3 Research Growth Award (reviewer) April 2013
American Society for Human Genetics (ASHG)'s DNA Day Essay Contest (reviewer)
June 2012
Scottish Clinical Academic Training Fellowship (reviewer)
July 2007
National Institute of Health Research (NIHR) Programme Grants for Applied Research programme (reviewer)
Editorial Responsibilities 2014Research Ethics; Associate Editor 2015-
BMC Medical Ethics; Associate Editor (section: Ethics in Biomedical Research)
Evaluation of Articles Social Science & Medicine; Genomics, Society & Policy; Journal of Medical Ethics; PLoS ONE; American Journal of Public Health; Public Health Ethics; Research Ethics; Health Expectations; Journal of Community Genetics; Pediatrics; European Journal of Human Genetics; International Journal of Environmental Research and Public Health; Sociology of Health & Illness; International Journal of Obesity; Clinical Trials; BMJ Open; Sage Open, Accountability in Research; BMC Medical Informatics and Decision Making; International Journal of Neonatal Screening; BMC Medical Ethics, Clinical Genetics, Genetics in Medicine. Committees within the University of Ottawa November Member, Organising Committee, Janet Wendy & John Last Visiting 2014- present Professorship (2014/2015 recipient: Muin Khoury) March 2014
Judge, Student Research Day, Department of Epidemiology & Community Medicine
March 2013
Judge, Student Research Day, Department of Epidemiology & Community Medicine
Engaged Scholarship @SG_Nicholls 5th August 2015 Provided media commentary in Nature (http://www.nature.com/news/bioethics-accused-of-doing-moreharm-than-good-1.18128 ) on Steven Pinker’s Boston Globe Op-Ed “The moral imperative for bioethics” 2nd October 2014
Provided media commentary on the arrival of 23andME to Canada. Outlets included CBC local radio (Ontario, Ottawa, Kitchener, Corner Brook, Winnipeg, Kamloops, Prince George, Kelowna), Radio Canada International, and CBC.ca News (Story: “23andme genetic testing service raises ethical questions”). Repeated on ‘the LINK online’ October 4, 2014.
September 2011 – January 2016
Associate Editor of Genethics.ca
4
Other activities September 2013 July 2013-
f)
Advisor, e-Delphi on research prioritisation, UK Translational Research Network in Dermatology (UK TREND), Invited workshop participant: draft WHO Document on Research Ethics Indicators. Toronto, Canada (also included in the ongoing development).
GRADUATE SUPERVISIONS: Completed: 2 M.A., 0 PhD In progress: 0 M.A., 0 Ph.D. Hoda El Katerji (MSc) Christina Catley (MSc)
g)
The impact of smoking sheesha on mucosal gene expression. Jan 2010 – Sept 2014 (Thesis committee) Professional engagement study: personalized medicine. Sept 2012 – December 2014 (Thesis committee)
GRADUATE COURSES: (tutor or sessional) Phil552: “Foundations in bioethics” Phil553: “Children and health” MNGT525: Quantitative & survey research methods PSYCH401: Analysing and interpreting data 1
LLM, Bioethics and Medical Law LLM, Bioethics and Medical Law MSc, Management Science MSc, Psychology
2011 2011 2008/9 2008/9
Other Courses Ethical Issues in Routinely Collected Data Biol2133: “Genetics”
h)
Epidemiology
23 February 2016 27, 29 January 2016
SPSS for beginners ECOL335: Statistics for biologists MATH230: “Probability” Multi-Level Models 21 – 22 April 2010
Biology, BSc, University of Ottawa CHEO RI Ecology Mathematics Short Course
CFAS426 STATA
Short Course
18-19 February 2009
EXTERNAL RESEARCH FUNDING:
4 September 2015 2010 2010 21-22 April 2010
5 Total Awarded Funding as Principal or Co-Applicant:
$1,644,013.45 CAD* (approx. with exchange) $271,112.00 CAD
Total Awarded funding as Principal Applicant:
Year
Source
Amount
Type*
Purpose**
2016
CHEO Research Growth Award
$26,918.00 (Under Review)
C
Research
Parent attitudes toward managing incidental results from newborn screening for cystic fibrosis: a qualitative pilot study to guide health policy and practice. Chakraborty P (PI), Nicholls SG (Co-PI), Davies C, Marcadier J, Price A, Hayeems RZ 2016
CHEO Research Growth Award
$15,966.20 (Under Review)
An Exploration of Factors that may impact Residents’ Mental Health Pound C (PI), Clarkin C, Nicholls SG, Matheson K, Singer A, Bryan S, White J (Co-I) 2016
Educational Initiatives $28,230.00 in Residency Education, (Under Review) University of Ottawa,
C
Research
Setting national priorities for teaching ethics and communication in Neonatal-Perinatal Medicine (Co-Applicant) Daboval T, Albersheim S, Ferretti E, Moussa A, Nicholls S, van Manen. 2016
Royal College of $27,790 Physician and Surgeons (Under Review) of Canada
c
Research
Setting national priorities for teaching ethics and communication in Neonatal-Perinatal Medicine (Co-Applicant) Daboval T, Albersheim S, Ferretti E, Moussa A, Nicholls S, van Manen. 2016
CIHR
$485,000 (Under Review)
C
Research
Improving research participation decisions: Extending a new model of consent based on patient decision aids (Co-Applicant) Brehaut JC, Saginur R, Fergusson D, Kimmelman J, Nicholls S, Roger M, Squires J, Stacey D, Clement AM. 2016
CIHR
$885,000 (Under Review)
C
Research
The Personal Genomics Generation: building a competency-oriented education initiative for young Canadians (Co-Applicant) Wilson BJ, Montepetit C, Vanderhyden B, Morrison S, Nicholls S, Potter E, Pullman D.
6 2016
CIHR
$850,000 (Under Review)
C
Research
Designing interventions to improve delivery of health care for children with inherited metabolic diseases: family and provider perspectives (Co-Applicant) E Potter, Chakraborty P, Brehaut J, Cohen E, Dyack S, Gillis J, Greenberg C, Grimshaw J, Hayeems R, MacKenzie J, Mitchell J, Nicholls S, Schulze A, Siriwardena K, Sparkes R, Speechley K, Stockler S, Teitelbaum M, Trakadis JI, van Karnebeek C, Walia J, Wilson B, Wilson K. 2016
Canadian Institutes of $9,880 Health Research (CIHR) - Planning and Dissemination Grant– Institute Community Support
C
Research
Evidence and values: what role in health policy to divest from screening?(Nominated Principal Investigator) Nicholls SG (Nom-PI), Clifford T (Principle KU), Little J (PI), Ashcroft R, Brehaut J, Graham I, Grimshaw J, Lavis J, Newson A, Potter E, Wilson M. 2015
Ontario Child Health $299,271.13 Support Unit (OCHSU) Impact Awards
C
Research
A cluster randomized controlled trial in Ontario hospitals providing maternal/newborn care to determine effectiveness of a parent-targeted educational video for improving newborn pain treatment (Co-Applicant) D Harrison (PI), S Dunn (Co-PI), M Campbell-Yeo, I Graham, J Harrold, C Larocque, S Nicholls, B Nicholls, P O'Flaherty, S Premji, J Reszel, S Semenic, J Squires, B Stevens, M Taljaard, MJ Trépanier, K Venter. 2015
CHAMO Innovation Fund
$100,000.00
C
Research
Development and validation of a newborn prediction model for severe (hospitalized) RSV through the development of an ICES based RSV research platform (CoApplicant) Hui C (PI), McNally JD; Benchimol EI; Piseky A; Hawken S, Chakraborty P; Wilson K; Paes B; Nicholls S; To T; Lanctot K. 2015
Canadian Institutes of Health Research (CIHR): Knowledge to Action Grant: Fall 2015 Competition
$200,000.00 (Under Review)
C
Research
Be Sweet to Babies – Moving effective pain management Knowledge to Action (CoInvestigator) Harrison D (Nom-PI), Dunn S (PI), Campbell-Yeo M, Graham I, Harrold J, Larocque C, Nicholls S, Premji S, Reszel J, Semenic S, Squires J, Stevens B, Taljaard M (Co-I), Nicholls B, O’Flaherty P, Trépanier M-J, Venter K (Collaborators)
7 2015
Public Health Agency of $660,000.00§ Canada/Nova Scotia Health Research Foundation
C
Research
PHAC Evidence Review Synthesis Centres (Co-Investigator) Moher D (Nom-PI) Little J (Co-PI) Goldfield G, Hutton B, Sampson M, Thavorn K, Knoll G, Bjerre L, Nicholls S, Wilson K, Welch V, Shea B, Manuel D, Colman I, Potter B (Co-I), Garrity C, Daniel R, Ahmadzai N, van Katwyk S, Turner L, Hersi M, Hamel C, Stevens A (Associates). §Core funding is $100,000.00 per year for 2 years. Each evidence review will be supported with funding of $115,000 with the possibility of 2-3 reviews per year. Thus total ranges between $330,000.00 for year one and up to $445,000.00 for year 2. Total funding may thus range from $660,000.00 to $775,000.00. 2015
University of Ottawa $9,968.45 Research Development Program (RDP) - Bridge Funding
O
Research
Be Sweet to Babies: Moving effective pain management Knowledge to action - A pilot study. (Co-Applicant) Harrison D (PI), Dunn S, Graham I, Harrold J, Larocque C, Nicholls S, Nicholls B, O'Flaherty P, Reszel J, Squires J, Stevens B, Taljaard M, Trépanier MJ (CoApplicants). 2015
Canadian Institutes of Health Research (CIHR): Knowledge Synthesis Grant: Fall 2014 Competition
$100,000.00
C
Research
A critical interpretive synthesis of recommendations for De-intensification and deIMPLEmentation from population Screening (DIMPLES). (Principal Investigator) Project Leaders: Julian Little, Tammy Clifford; Project Experts: Richard Ashcroft, Jeffrey Botkin, Jamie Brehaut, Douglas Coyle, Angus Dawson, Lesley Dunfield, Ian Graham, Jeremy Grimshaw, Alex Kemper, John Lavis, Ainsley Newson, Stuart Nicholls, Beth Potter, Lindsey Sikora, Marcel Verweij, Michael Wilson 2013
Clinical Trials Ontario
$1500
O
Research
Setting a research agenda for quality assessment in research ethics review (Principal Investigator) Stuart Nicholls (PI), Jamie C Brehaut (Nom-PI), Dean Fergusson, Michael McDonald, Raphael Saginur, Charles Weijer 2013
Canadian Institutes of Health Research (CIHR): Operating Grant
$271,733
C
Research
8 A shared understanding? Attitudes and experiences of stakeholders to newborn screening consent practices and implications for policy and practice (Co-Investigator)( EOG 131589) Co-Applicants: Brenda J Wilson (Nom-PI), Jamie C Brehaut, Holly Etchegary (PIs), Pranesh Chakraborty, Robin Hayeems, Jennifer Milburn, Beth K Potter, Daryl Pullman, Lesley Turner 2013
Canadian Institutes of Health Research (CIHR): Operating Grant
$120,000
C
Research
REporting of studies Conducted using Observational Routinely-Collected Data (RECORD) (Co-Applicant) Co-Applicants: Eric Benchimol (Nom-P-A) Sinead Langan (PI), Astrid Guttman, David Moher, Irene Petersen, Liam Smeeth, Henrik T Sorensen, Stuart G. Nicholls, Fiona J Stanley, Erik von Elm 2013
Canadian Institutes of $24,732 Health Research (CIHR): Planning Grant
C
Research
Setting a research agenda for quality assessment in research ethics review (Principal Applicant)(MPE-126678) Nicholls SG (PI) Brehaut JC (Nom-PI), Fergusson D, McDonald M, Saginur R, Weijer C (Co-I) 2012
Canadian Institutes of $135,000 Health Research (CIHR)
C
Postdoctoral Fellowship
An analysis of stakeholder attitudes towards the role and application of informed consent for expanded newborn bloodspot screening (Principal Investigator)(MFE262516) Nicholls SG (PI) Wilson BJ, Brehaut JC (Co-I). 2011
Society for Applied Philosophy
£430
F
Research
Public Health, Equity and Interventions Co-applicant (with Kristin Voigt and Garrath Williams) 2011
Institute for Medical Ethics
£250
F
Research
Public Health, Equity and Interventions Co-applicant (with Kristin Voigt and Garrath Williams) 2008
Genomics Forum
£6,000
C
Research
Postgraduate Forum on Genetics and Society (PFGS) Co-applicant (with Molly Morgan, Stevianna de Saille and Rachel DouglasJones) *Type: C-Granting councils; G-Government; F-Foundations; O-Other ** Purpose: research, travel, publication, etc.
9 j)
PUBLICATIONS:
Books authored: Book chapters: Papers in refereed journals: Review articles: Published abstracts: Conference presentations: Reports:
1 3 37 3 18 74 1
Books 1. Voigt K, Nicholls SG, Williams G (2014) Childhood Obesity: Ethical and Policy Issues. Oxford University Press: Oxford (ISBN: 9780199964482). Citations: 4 Reviews of “Childhood Obesity: Ethical and Policy Issues” -
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-
“A welcome and much needed work which promises to significantly shape future research in the area. The authors draw on an impressive range of sources and support normative claims with solid empirical evidence throughout. The book is clearly written and well-argued and is going to be a landmark in the emerging normative literature on obesity and on public health ethics in general.” – Matteo Bonnotti, in Global Discourse. DOI:10.1080/23269995.2014.952076 “Well researched (over 500 references!), clearly written, and cogently argued, this is an excellent book.” – T.P. Gariepy, in CHOICE: Current Reviews for Academic Libraries Feb. 2015: 1012. “A well-researched, highly critical, but carefully balanced examination of everyday assumptions about childhood obesity and its prevention from an intensely moral perspective. Although the authors demonstrate that no intervention is without ethical complications or effective entirely on its own, they call for immediate actions to reduce the stigma of childhood obesity, support parents, and create food environments healthier for children, adults, and the environment.” -Marion Nestle, Paulette Goddard Professor of Nutrition, Food Studies, and Public Health, NYU Steinhardt School of Culture, Education, and Human Development “This book provides a welcome re-appraisal of commonly-held beliefs about child obesity and misconceptions about what needs to be done. […] The book shows convincingly how the causes of obesity - and the range of associated diseases - lie in the fabric of the modern market economy: in the food supply which shapes our diets, the social and physical environment which encourages sedentary behaviour, and in the media which promote ever greater consumption. Obesity is not the problem: it is the symptom of a more complex social and economic malaise encouraging poor health. The case for interventions by governments to promote health and wellbeing above crude economic growth is comprehensively proven.” - Dr. Tim Lobstein, Director of Policy and Programmes, The International Association for the Study of Obesity and The International Obesity Task Force
10 Book chapters 3. Nicholls SG, Langan S, Benchimol E. “Reporting and transparency in big data: the nexus of ethics and methodology”, in Mittelstadt B, Floridi L (2015). Ethics of Biomedical Big Data, Springer: Berlin, Germany (In Press) 2. Nicholls, SG., Milburn, J., Pullman, D. “Newborn bloodspot screening: Personal choice or public health necessity? Storage and ownership of newborn bloodspots”, in Barrett, DH., Bolan, G., Dawson, A., Ortmann, L., Reis, A., Saenz, C., (2015) Public Health Ethics: Cases Spanning the Globe, Springer. 1. Wickins-Drazilova D., Nicholls S, Williams, G, Börnhorst C, Grafström C, De Henauw S, Marild S, Molnar D, Moreno Aznar L.A, Pigeot I, Siani A, Tornaritis M, Veidebaum T, Ahrens W, on behalf of the IDEFICS consortium. "Parental views on public-policy options regarding healthy eating", in Romeo Casabona, CM., San Epifanio, LE., Cirón, AE. (2010) Global Food Security: Ethical and Legal Challenges, pp. 184-188, Wageningen Academic Publishers: Wageningen, the Netherlands. Journal articles 2016 37. Etchegary H, Nicholls S, Tessier L, Simmonds C, Potter B, Brehaut J, Pullman D, Hayeems R, Zelenietz S, Lamoureux M, Milburn J, Turner L, Chakraborty P, and Wilson B. Consent for newborn screening: Parents' and healthcare professionals' experiences of consent in practice. European Journal of Human Genetics (Accepted) 36. Nicholls SG, Etchegary H, Carroll JC, Castle D, Lemyre L, Potter BK, Craigie S, Wilson BJ, on behalf of the CIHR Emerging Team in Genomics and Screening. Attitudes to incorporating genomic risk assessments into population screening programs: the importance of purpose, context and deliberation. BMC Medical Genomics (Accepted) 35. Nicholls SG, Langan SM, Sørensen HT, Petersen I, Benchimol EI. The RECORD reporting guidelines: Meeting the methodological and ethical demands of transparency in research using routinely collected health data. Clinical Epidemiology (Under Review) 34. Nicholls SG, Langan SM, Benchimol EI, Moher D. Reporting transparency: making the ethical mandate explicit. BMC Medicine. 14:44; DOI: 10.1186/s12916-016-0587-5 33. Pound C, Ward N, Freuchet M, Akiki S, Chan J, Nicholls S. Hospital staff’s perceptions with regards to the Baby-Friendly Initiative; experience from a Canadian tertiary care centre. Journal of Human Lactation (Accepted, subject to minor revisions, revisions submitted) 32. Nicholls SG, Fafard P. Genetic discrimination legislation in Canada: Moving from rhetoric to real debate CMAJ DOI:10.1503/cmaj.151170 31. Nicholls SG, Newson AJ, Ashcroft RE. The need for ethics as well as evidence in evidence-based medicine. Journal of Clinical Epidemiology (Accepted, subject to minor
11 revisions, revisions submitted) 2015 30. Garde A, Nicholls SG, O’Hearn K, Menon K. Reporting of consent rates in critical care studies: room for improvement. Journal of Clinical Epidemiology (Online early): DOI: http://dx.doi.org/10.1016/j.jclinepi.201 29. Nicholls SG, Pohlabeln H, De Bourdeaudhuij I, Chadjigeorgiou C, Gwozdz W, Hebestreit A, Lauria F, Lissner F, Molnár D, Santaliestra-Pasías AM, Veidebaum T, Williams G, on behalf of the IDEFICS consortium. Parents’ evaluation of the IDEFICS intervention: an analysis focussing on socio-economic factors, child’s weight status, and intervention exposure. Obesity Reviews. 16 (Suppl S2): 103-118 28. Healy EP., Brown S, Shams K, Langan S, Nicholls SG., Reynolds NJ. Identification of Translational Dermatology Research Priorities in the UK: an e-Delphi Exercise. British Journal of Dermatology DOI: 10.1111/bjd.14022 27. Nicholls SG, Hayes TA, Brehaut JC, McDonald M, Weijer C, Saginur R, Fergusson D. (2015) A scoping review of empirical research relating to quality and effectiveness of research ethics review. PLoS One 10(7): e0133639 DOI: 10.1371/journal.pone.0133639 - featured in Nature news article: “Bioethics accused of doing more harm than good” 26. Harrison, D, Reszel J, Wilding J, Abdulla K, Bueno M, Campbell-Yeo M, Dunn S, Harrold J, Nicholls S, Squires J, Stevens B. (2015) Neonatal Pain Management Practices during heel lance and venipuncture in Ontario, Canada. Newborn and Infant Nursing Reviews doi: 10.1053/j.nainr.2015.06.010 25. Nicholls SG, Quach P, von Elm E, Guttmann G, Moher D, Petersen I, Sørensen HT, Smeeth L, Langan SM, Benchimol EI. (2015) The REporting of studies Conducted using Observational Routinely-collected health Data (RECORD) Statement: Methods for Arriving at Consensus and Developing Reporting Guidelines. PLoS One 10(5): e0125620. doi:10.1371/journal.pone.0125620 24. Wilson BJ, Nicholls SG. (2015) The human genome project, and recent advances in personalized genomics. Risk Management and Healthcare Policy. 8:9-20. DOI: 10.2147/RMHP.S58728 2014 23. Nicholls SG, Tessier L, Etchegary H, Brehaut JC, Potter BK, Hayeems R, Chakraborty P, Marcadier J, Milburn J, Pullman D, Turner L, Wilson BJ. (2014) Stakeholder attitudes towards the role and application of informed consent for newborn screening: Study protocol. BMJ Open. 4 :e006782 DOI: 10.1136/bmjopen-2014-006782 22. Nicholls SG, Wilson BJ, Castle D, Etchegary H, Carroll JC. (2014) Personalized medicine and genome-based treatments: why personalized medicine ≠ individualized treatments. Clinical Ethics. 9(4):135-144 DOI: 10.1177/1477750914558556
12 21. Nicholls SG, Wilson BJ, Etchegary H, Brehaut JC, Pullman D, Chakraborty P, Hayeems RZ, Potter BK, Milburn J, Turner L. (2014) Benefits and burdens of newborn screening: public understanding and decision making. Personalized Medicine. 11(6): 593-607 DOI: 10.2217/pme.14.46 20. Harrison D, Sampson M, Reszel J, Abdulla K, Barrowman N, Cumber J, Fuller A, Li C, Nicholls S, Pound C. (2014) Too many crying babies: A systematic review of pain management practices during immunizations on YouTube. BMC Pediatrics. 14:134 doi:10.1186/1471-2431-14-134 19. Potter BK, Etchegary H, Nicholls SG, Wilson, BJ, Craigie SM, Araia MH. (2014) Education and parental involvement in decision-making about newborn screening: understanding goals to clarify content. Journal of Genetic Counseling (DOI: 10.1007/s10897014-9780-x) 18. Nicholls SG., Brehaut JC., Arim, RG., Carroll K., Perez R., Shojania KG, Grimshaw J., Poses R. (2014) Stated barriers and impact on proposed warfarin prescription for atrial fibrillation: a survey of Canadian physicians. Thrombosis Journal. 12: 13 doi:10.1186/14779560-12-13 17. Nicholls SG, Joly Y, Moher E, Little J. (2014) Genetic discrimination and insurance in Canada: Where are we now? On The Risk. 30(3): 46-52 16. Nicholls SG., Southern KW (2014) Considering consent: A structural equation modeling analysis of factors influencing decisional quality when accepting newborn screening. Journal of Inherited Metabolic Disease. 37:197-205. Doi: 10.1007/s10545-013-9651-x 2013 15. Nicholls SG, Wilson BJ, Craigie SM, Etchegary H, Castle D, Carroll JC, Potter BK, Lemyre L, Little J, on behalf of the CIHR Emerging Team in Genomics in Screening (2013) Public attitudes towards genomic risk profiling as a component of routine population screening. Genome. 56: 626-633 doi: 10.1139/gen-2013-0070 14. Nicholls SG, Southern KW. (2013) Parental decision-making and acceptance of newborn bloodspot screening: an exploratory study. PLoS One, 8(11): e79441. DOI: 10.1371/journal.pone.0079441 - Highlighted as an Educational Resource by the Association of Public Health Laboratories (APHL) Newborn Screening Technical assistance and Evaluation Program (NewSTEPS). 13. Nicholls SG. (2013) Standards and classification: A perspective on the ‘obesity epidemic’. Social Science & Medicine, 87: 9-15. DOI: 10.1016/j.socscimed.2013.03.009 - As per September 2015: This article is in the top 5% of all articles ever tracked by Altmetric. 2012 12. Nicholls SG., Southern KW. (2012) Informed choice for newborn bloodspot screening in the UK: a survey of parental perceptions. Pediatrics. 130: e1527-e1533 DOI: 10.1542/peds.2012-147
13 11. Nicholls SG, Brehaut JC, Saginur R. (2012) Social science and ethics review: a question of practice not principle. Research Ethics; 8(2) 71–78 DOI: doi: 10.1177/1747016112445435 10. Nicholls SG, Southern KW. (2012) Parental information use when learning about newborn bloodspot screening. An exploratory mixed methods study. Journal of Community Genetics , 3(4): 251-257 DOI: 10.1007/s12687-012-0082-4 9. Nicholls SG. (2012) Proceduralisation, choice and parental reflections on decisions to accept newborn bloodspot screening. Journal of Medical Ethics; 38(5): 299-303 doi:10.1136/medethics-2011-100040 - Cited within the Wikipedia entry for “Newborn Screening” 2011 8. Nicholls SG., Gwozdz W, Reisch LA, Voigt K. (2011) Fiscal food policy: equity and practice. Perspectives in Public Health, 131 (4): 157-158 DOI: 10.1177/1757913911412479
2010 7. Nicholls S. (2010) Knowledge or understanding? Informed choice in the context of newborn bloodspot screening. Public Health Ethics, 3(2): 128-136. DOI: 10.1093/phe/phq016 - Cited by the UK Newborn Screening Centre report ‘Health professional handbook. A guide to newborn blood spot screening for healthcare professionals’ (2012) 2008 6. McAllister M, Payne K, Macleod R, Nicholls S, Donnai D, Davies L.M. (2008) What process attributes of clinical genetics services could maximise patient benefits? European Journal of Human Genetics. 16(12): 1467-76 DOI: 10.1038/ejhg.2008.121 5. McAllister M, Payne K, Macleod R, Nicholls S, Donnai D, Davies L.M. (2008) Patient empowerment in clinical genetics services. Journal of Health Psychology. 13(7): 895-905 DOI: 10.1177/1359105308095063. 4. Payne K, Nicholls S, McAllister M, Macleod R, Donnai D, Davies L.M. (2008) Outcome measurement in clinical genetics services: a systematic review of validated measures. Value in Health. 11(3): 497-508 DOI: 10.1111/j.1524-4733.2007.00259.x 2007 3. McAllister M, Davies L.M, Payne K, Nicholls S, Donnai D, MacLeod R. (2007) The emotional effects of genetic diseases: implications for clinical genetics. American Journal of Medical Genetics. 143(22): 2651-2661 DOI: 10.1002/ajmg.a.32013 2. Payne K, Nicholls S, McAllister M, MacLeod R, Ellis I, Donnai D, Davies L.M. (2007) Outcome measures for clinical genetics services: a comparison of genetics healthcare professionals and patients’ views. Health Policy. 84(1): 112-122 DOI: 10.1016/j.healthpol.2007.03.005
14 1. McAllister M, Payne K, Nicholls S, MacLeod R, Donnai D, 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): 71-83 DOI: 10.1007/s10897-006-9046-3 Review articles 3. Nicholls, SG. (2011) Genomics twists of fate, by Stanley Fields & Mark Johnston. Reviewed in: Life Sciences, Society and Policy 7(1): 74 2. Nicholls, SG. (2011) Progress in Bioethics. Science, Policy, and Politics, by Jonathan D. Moreno and Sam Berger (Editors). Reviewed in Metapsychology Online Reviews, 15(5). 1. Nicholls S, (2010). The body in bioethics, by Alastair V. Campbell. Reviewed in: Medical Law Review, 18: 120-125. Under Review 1. Etchegary H, Nicholls SG, Tessier L, Simmonds C, Potter BK, Brehaut JC, Pullman D, Hayeems RZ, Zelenietz S, Lamoureux M, Milburn J, Turner L, Chakraborty P, Wilson BJ. Consent for newborn screening: Parents’ and healthcare professionals’ experiences of consent in practice European Journal of Human Genetics. Published abstracts 19. Garde A, Nicolls S, O’Hearn K, Menon K. 305: REPORTING OF CONSENT RATES IN CRITICAL CARE STUDIES: ROOM FOR IMPROVEMENT. Critical care medicine 43 (12 Suppl 1): 78 18. Shams K, Brown NS, Langan S, Nicholls S, Healy E, Reynolds N. (2015) Results of an eDelphi exercise on translational dermatology research priorities in the U.K. British Journal of Dermatology; 172(5): e39 17. Nicholls SG, Wilson BJ, Brehaut JC, Etchegary H, Potter BK, Hayeems RZ, Pullman D, Milburn J, Chakraborty P, Hernandez M, Marcadier J, Tessier L, Simmonds C, Turner L. (2014) “Parent attitudes to newborn screening consent practices”. Clinical Biochemistry; 47(15):133-134. doi: 10.1016/j.clinbiochem.2014.07.02 16. Nicholls, SG., Wilson BJ, Etchegary H, Craigie SM, Castle D, Carroll JC, Little J, on behalf of the CIHR Emerging Team in Genomics and Screening (2012) Personalizing public health: Public attitudes towards genomic risk profiling as a component of routine population screening. Genome; 55 (10): 728 15. Nicholls SG, Williams G, Wickins-Drazilova D, Siani A, De Henauw S, Marild S, Molnar D, Moreno LA, Tornaritis M, Veidebaum T, Pigeot I, Ahrens W, on behalf of the IDEFICS consortium. (2012) Public attitudes towards taxation and subsidisation as obesity
15 intervention measures: results from the IDEFICS parental questionnaire. Public Health Nutrition; 15(8A): 1556. doi:10.1017/S1368980012001905 14. Nicholls, SG., Southern, K.W., (2011) Parental selection and use of information when learning about newborn bloodspot screening. Pediatric Pulmonology;46(S34): 427. 13. Nicholls, SG. Williams, G. (2011) “The parent versus the state: responsibility in childhood obesity.” Obesity Reviews 12, (Suppl. 1): 38 12. Williams G, Nicholls S, Voigt K, Wickins-Drazilova, on behalf of the IDEFICS consortium (2011). Ethical and political aspects of obesity interventions in children. International Journal of Obesity; 35: S148 11. Nicholls SG, Williams G, Wickins-Drazilova D, Siani A, De Henauw S, Marild S, Molnar D, Moreno LA, Tornaritis M, Veidebaum T, Pigeot I, and Ahrens W, on behalf of the IDEFICS consortium. (2011) “Money' s too tight ( to mention) : taxation and subsidisation as obesity intervention measures.” International Journal of Obesity; 35: S159 10. McAllister M, Nicholls S, MacLeod R, Donnai D, Davies L. (2007) “Towards outcome measures for clinical genetics services: a triangulation of methods”. Journal of Medical Genetics; 44: Suppl1: S48 9. Payne K, Nicholls SG, McAllister M, MacLeod R, Donnai D, Davies LM. (2006) Outcome measurement in clinical genetics services: a systematic review of validated measures. Journal of Medical Genetics; 43 Suppl 1: S62 8. Payne K, Nicholls SG, McAllister M, MacLeod R, Donnai D, Davies LM. (2006) “Towards outcome measures for clinical genetics services: a comparison of genetics healthcare professionals and patients’ views”. Journal of Medical Genetics; 43 Supple 1: S61 7. McAllister M, Nicholls S, Payne K, Davies L, MacLeod R, Middleton-Price H and Donnai D. (2006) “Process and outcome in clinical genetics services: a new model developed from qualitative research”. Journal of Medical Genetics: 43(Suppl. 1):S62. 6. McAllister, Payne K, Nicholls S, Macleod R, Middleton-Price H, Donnai D, Davies L.(2006) “Evaluation of clinical genetics services – a qualitative study identifying outcome measures”. European Journal of Human Genetics: 14: Suppl I EPL12 5. McAllister M, Payne K, Nicholls S, Macleod R, Davies L, Middleton-Price H, Donnai D. (2005) “Evaluating genetics services – exploring the client perspective” Journal of Medical Genetics: 42 suppl 1: S23 4. Nicholls S, Hyatt J, Slattery R, Donnai D, Middleton-Price HR. (2005) “Human Genetics and Society: a novel public engagement activity” Journal of Medical Genetics; 42 Suppl 1: S120 3. McAllister M, Payne K, Davies L, Nicholls S, Macleod R, Middleton-Price H and Donnai D. (2004) “How can we measure whether clinical genetic services are effective?” Journal of Medical Genetics; 41 Suppl 1: S47
16 2. Davies L, Payne K, McAllister M, Nicholls S, Macleod R, Middleton-Price H and Donnai D. (2004) “Developing appropriate models of service delivery in clinical genetics”. Journal of Medical Genetics; 41 Suppl 1: S47 1. Nicholls S, Middleton-Price H, and Davies L. (2004) “Making Written Information More Accessible”. Journal of Medical Genetics; 41 Suppl 1: S85
Invited presentations “Reporting of research using routinely collected data: the nexus of ethics and methodology” ICES@uOttawa, Ottawa, 4 March 2016 “Reporting of research using routinely collected data: the nexus of ethics and methodology” School of Epidemiology, Public Health and Preventive Medicine, Ottawa, 29 February 2016 “Looking under the lamppost: a review of empirical research on ethics review” International Development Research Centre, Ottawa, 26 November 2015 “Removal of screening conditions: Ethical issues”. Canadian Association of Genetic Counsellors Annual Meeting, Ottawa, 11 September 2015 “Routinisation, choice and parental reflections on decisions to accept newborn bloodspot screening”. Institute of Population Health, University of Ottawa, 16 February 2011. “From Knowledge to Understanding: Informed Choice in the Context of Newborn Bloodspot Screening”. Department of Epidemiology and Community Medicine, University of Ottawa, 14 February 2011. “Newborn screening and the parent experience: a qualitative study”. PEALS seminar series, Newcastle University, UK, 14 May 2009. Conference Contributions 77. Harrison D, Aubertin C, Bueno M, Dagg B, Dunn S, Fuller A, Harrold J, Larocque C, Nicholls S, Reszel J, Sampson M. Be Sweet to Babies: A social media evaluation of a neonatal pain reduction YouTube video. Council of International Neonatal Nurses (COINN) Conference. Vancouver, British Columbia. August 14-17, 2016. 76. Stuart G. Nicholls, Holly Etchegary, Laure Tessier, Charlene Simmonds, Beth K. Potter, Jamie C. Brehaut, Daryl Pullman, Robin Z. Hayeems, Keith Miller, Sari Zelenietz, Monica Lamoureux, Jennifer Milburn, Lesley Turner, Pranesh Chakraborty, Brenda J. Wilson. Varied understanding of consent language: implications for policy and practice in the context of newborn screening. Accepted as a poster presentation 13th World Congress of Bioethics, Edinburgh, Scotland, June 14-17 2016. 75. Ashcroft R, Nicholls SG, Clifford T, Sikora L, Atwere P, Ashcroft R, Newson A, Potter B, Brehaut J, Graham I, Wilson M, Lavis J, Grimshaw J, Verweij M, Dawson A, Coyle D, Kemper A, Botkin J, Dunfield L, Little J. Stopping screening: facts, values, and decisions. Accepted as a poster presentation 13th World Congress of Bioethics, Edinburgh, Scotland, June 14-17 2016.
17 74. Stuart G. Nicholls, Holly Etchegary, Laure Tessier, Charlene Simmonds, Beth K. Potter, Jamie C. Brehaut, Daryl Pullman, Robin Z. Hayeems, Keith Miller, Sari Zelenietz, Monica Lamoureux, Jennifer Milburn, Lesley Turner, Pranesh Chakraborty, Brenda J. Wilson. “Varied meaning of consent in the context of newborn screening and implications for policy and practice”. Accepted as poster presentation at the Sparking Population Health Solutions Summit, Ottawa, Ontario. April 25 – 28, 2016. 73. Clifford T, Nicholls SG, Atwere P, Sikora L, Jafar F, Anderson S, Potter P, Ashcroft R, Newson A, Brehaut J, Graham I, Wilson M, Lavis J, Grimshaw J, Verweij M, Dawson A, Coyle D, Kemper A, Botkin J, Dunfield L, Little J. Stopping screening: a critical interpretive synthesis of evidence and values in recommendations to disinvest from newborn bloodspot screening. Accepted as an oral presentation at the Canadian Newborn and Child Screening Symposium, Ottawa, April 21-22 , 2016 72. Wilson BJ, Catley CA, Little J, Nicholls SG, Carroll JC, Etchegary H, Taljaard M, on behalf of the CIHR Emerging Team in Genomics in Screening. Genomics and personalized medicine in primary care: a professional engagement study using theory-informed approaches. 13th International Congress of Human Genetics (ICHG), Kyoto, Japan, April 3-7, 2016 (submitted) 71. Miller KW, Nicholls SG, Etchegary H, Tessier L, Simmonds C, Potter BK, Brehaut JC, Pullman D, Hayeems RZ, Zelenietz S, Lamoureux M, Milburn J, Turner L, Chakraborty P, Wilson BJ. Context Matters. Attitudes, experiences and meanings of consent to stakeholders within newborn screening. Accepted as poster presentation at the 65th American Society of Human Genetics (ASHG) conference, Baltimore, USA, October 6-10, 2015. 70. Wilson BJ, Catley CA, Little J, Nicholls SG, Carroll JC, Etchegary H, Taljaard M, on behalf of the CIHR Emerging Team in Genomics in Screening. Genomics and personalized medicine in primary care: a professional engagement study using a novel, theory-informed workshop approach. Accepted as poster presentation at the 65th American Society of Human Genetics (ASHG) conference, Baltimore, USA, October 6-10, 2015. 69. Langan SM, Guttmann A, Harron K, Moher D, Petersen I, Sørensen HT, Smeeth L, Nicholls S, von Elm E, Benchimol EI, on behalf of the RECORD Working Committee. Guidelines for the REporting of studies Conducted using Observational Routinely-collected health data (RECORD): An extension of the STROBE reporting guidelines. Increasing value and reducing waste in biomedical research conference, September 28-30 2015, Edinburgh, UK. 68. Langan S, Guttmann A, Harron K, Moher D, Petersen I, Sørensen H, Smeeth L, Nicholls S, von Elm E, Benchimol E, on behalf of the RECORD Working Committee. Guidelines for the REporting of studies Conducted using Observational Routinely-collected health data (RECORD): An extension of the STROBE reporting guidelines. Farr Institute International Conference 2015: Data Intensive Health Research and Care, St. Andrews, Scotland, UK, August 2628 2015. 67. Healy E, Brown SJ, Langan S, Nicholls SG, Shams K, Reynolds NJ. Identifying Translational Dermatology Research Priorities in the UK: Results of an e-Delphi Exercise. 95th Annual Meeting of the British Association of Dermatologists (BAD), Manchester, UK, July 7-9, 2015.
18 66. Benchimol E, Guttman A, Harron K, Moher D, Peterson I, Sørensen H, Smeeth L, Nicholls S, von Elm E, Langan S, on behalf of the RECORD Working Committee. Guidelines for the REporting of studies Conducted using Observational Routinely-collected health data (RECORD): An extension of the STROBE reporting guidelines. AcademyHealth Annual Research Meeting, Minneapolis, June 14-16, 2015. 65. Larocque C, Harrison D, Reszel J, Nicholls S, Dunn S, Figueredo L. Be Sweet to Babies in many languages: Using YouTube to disseminate a parent-targeted video on pain reduction in babies during blood work. 15th annual Knowledge Utilization Colloquium (KU15). Ottawa, Ontario. June 9th, 2015. 64. Wilding J, Harrison D, Bowman A, Fuller A, Nicholls S, Pound C, Reszel J, Sampson M. The effectiveness of YouTube to disseminate evidence on pain management during infant immunizations. Champlain Maternal Newborn Regional Program (CMNRP) 5th Annual Maternal Newborn Conference. Ottawa, Ontario. May 28-29, 2015. 63. Benchimol E, Guttman A, Harron K, Moher D, Peterson I, Sørensen H, Smeeth L, Nicholls S, von Elm E, Langan S, on behalf of the RECORD Working Committee. Guidelines for the REporting of studies Conducted using Observational Routinely-collected health data (RECORD): An extension of the STROBE reporting guidelines. Canadian Association for Health Services and Policy Research (CAHSPR) conference 2015, Montreal, Quebec, May 26-28, 2015. 62. Nicholls SG, Etchegary H, Tessier L, Simmonds CS, Potter BK, Brehaut JC, Pullman D, Hayeems RZ, Zelenietz S, Lamoureux M, Milburn J, Turner L, Chakraborty P, Wilson BJ. A common conception? Exploring stakeholder meanings of consent terminology in the context of newborn bloodspot screening. Accepted as a poster presentation at the Canadian Newborn and Child Screening Symposium, Ottawa, April 30 – May 1, 2015 61. Tessier L, Nicholls SG, Etchegary H, , Simmonds S, Potter BK, Brehaut JC, Pullman D, Hayeems RZ, Zelenietz S, Lamoureux M, Milburn J, Turner L, Chakraborty P, Wilson BJ. To screen or not to screen: why do parents accept or decline newborn bloodspot screening? Accepted as a poster presentation at the Canadian Newborn and Child Screening Symposium, Ottawa, April 30 – May 1, 2015 60. Turner L, Etchegary H, Nicholls SG, Tessier L, Simmonds S, Potter BK, Brehaut JC, Pullman D, Hayeems RZ, Zelenietz S, Lamoureux M, Milburn J, , Chakraborty P, Wilson BJ
Parents’ and healthcare professionals’ experiences of consent for newborn bloodspot screening. Accepted as a poster presentation at the Canadian Newborn and Child Screening Symposium, Ottawa, April 30 – May 1, 2015
59. Lee O, Nicholls SG, Etchegary H, Tessier L, Simmonds S, Potter BK, Brehaut JC, Pullman D, Hayeems RZ, Zelenietz S, Lamoureux M, Milburn J, Turner L, Chakraborty P, Wilson BJ. Newborn bloodspot screening in Canada: A survey of organisation and practice. Accepted as a poster presentation at the Canadian Newborn and Child Screening Symposium, Ottawa, April 30 – May 1, 2015 58. Healy E, Brown SJ, Langan S, Nicholls SG, Shams K, Reynolds NJ. Results of an eDelphi Exercise on Translational Dermatology Research Priorities in the UK. The British
19 Society for Investigative Dermatology (BSID) Annual Meeting, Southampton, UK, April 27-29, 2015. 57. Nicholls SG, Etchegary H, Tessier L, Simmonds C, Potter BK, Brehaut JC, Pullman D, Hayeems RZ, Zelenietz S, Lamoureux M, Milburn J, Turner L, Chakraborty P, Wilson BJ. Universal Understanding? Stakeholder Interpretations of Consent Terminology in the Context of Newborn Bloodspot Screening. Accepted as a poster presentation at the Canadian GE3LS and Health Services & Policy Research Conference: “Integrated Approaches to Opportunities and Challenges in the Genomics Era”, Vancouver, April 18-21, 2015 56. Etchegary H, Nicholls SG, Tessier L, Simmonds C, Potter BK, Brehaut JC, Pullman D, Hayeems RZ, Zelenietz S, Lamoureux M, Milburn J, Turner L, Chakraborty P, Wilson BJ. Obtaining Consent for Newborn Bloodspot Screening (NBS): Parents’ and Healthcare Professionals’ Experiences in Practice. Accepted as a poster presentation at the Canadian GE3LS and Health Services & Policy Research Conference: “Integrated Approaches to Opportunities and Challenges in the Genomics Era”, Vancouver, April 18-21, 2015 55. Lacaze-Masmonteil T, Nesbitt LP, Macarthur C, Offringa M, Pluscauskas M, Kamil Y, Nicholls S, Conrad S, Osmond M. A Research Data Infrastructure Proposal for the Ontario Child Health SUPPORT Unit. Accepted as a poster presentation at the American Medical Informatics Association Joint Summits on Translational Science, San Francisco, March 23-27, 2015 54. Desrosiers A, Harrison D, Bueno M, Abdulla K, Campbell-Yeo M, Dunn S, Harrold J, Nicholls S, Reszel J, Squires J, Stevens B, Wilding J. How often do we use breastfeeding, skin-to-skin care and sucrose to reduce neonatal procedural pain? Canadian National Perinatal Research Meeting (CNPRM) 2015. Montebello, Quebec. February 24-27, 2015 53. Harrison D, Wilding J, Sampson M, Reszel J, Pound C, Fuller A, Barrowman N, Nicholls S. Too many screaming babies: Does a YouTube video improve pain management practices during immunizations? Children’s Hospital of Eastern Ontario (CHEO) Research Day, Ottawa, Ontario, October 22, 2014 52. Harrison D, Bueno M, Abdulla K, Campbell-Yeo M, Dunn S, Harrold J, Nicholls S, Reszel J, Squires J, Stevens B, Wilding J. How often do we use breastfeeding, skin to skin care
and sucrose to reduce neonatal procedural pain? Children’s Hospital of Eastern Ontario (CHEO) Research Day, Ottawa, Ontario, October 22, 2014 51. Nicholls, S.G. De-implementation of newborn bloodspot screening: ethical and policy issues. Accepted as poster presentation at the 64th American Society of Human Genetics (ASHG) conference, San Diego, USA, October 18-22, 2014. Poster highlighted as one of three ELSI posters for inclusion in the Poster Walks session (Leader Wylie Burke). 50. Harrison D, Bueno M, Abdulla K, Campbell-Yeo M, Dunn S, Harrold J, Nicholls S, Reszel J, Squires J, Stevens B, Wilding J. How often do we use breastfeeding, skin to skin care and sucrose to reduce neonatal procedural pain? International Association for the Study of Pain (IASP) 15th World Congress on Pain. Buenos Aires, Argentina. October 6-11, 2014. 49. Nicholls SG, Wilson BJ, Brehaut JC, Etchegary H, Potter BK, Hayeems RZ, Pullman D, Milburn J, Chakraborty P, Hernandez M, Marcadier J, Tessier L, Simmonds C, Turner L. “A shared understanding? Attitudes of stakeholders to newborn screening consent practices.”
20 Accepted as oral presentation 12th World Congress of Bioethics, Mexico City, Mexico, June 25-28 2014. 48. Nicholls SG, Wilson BJ, Brehaut JC, Etchegary H, Potter BK, Hayeems RZ, Pullman D, Milburn J, Chakraborty P, Hernandez M, Marcadier J, Tessier L, Simmonds C, Turner L. “Parent attitudes to newborn screening consent practices”. The 2014 Joint Garrod and Canadian Newborn & Child Screening Symposium, Ottawa, Ontario, May 29-31 2014 47. Harrison D, Sampson M, Reszel J, Cumber J, Pound C, Fuller A, Abdulla K, Barrowman N, Nicholls S. Too many screaming babies: Using YouTube as a knowledge translation medium to reduce the tears and fears during immunizations. Champlain Maternal Newborn Regional Program (CMNRP) 4th Annual Maternal Newborn Conference. Ottawa, Ontario. May 2627, 2014. 46. Harrison D, Sampson M, Reszel J, Cumber J, Pound C, Fuller A, Abdulla K, Barrowman N, Nicholls S. Too many screaming babies: Using YouTube as a knowledge translation medium to reduce the tears and fears during immunizations. Canadian Pain Society 35th Annual Scientific Meeting, Quebec City, Quebec, May 20-23, 2014. 45. Nicholls SG, Hayes T, Brehaut JC, Carroll K, McDonald M, Weijer C, Saginur R, Fergusson D. “Watching the watchmen: A scoping review of empirical studies evaluating research ethics review.” Society for Clinical Trials 35th Annual meeting, Philadelphia, Pennsylvania, May 18-21, 2014. 44. Catley C, Little J, Nicholls S, Etchegary H, Taljaard M, Carroll J, Castle D, Allanson J, Wilson B. “Personalized medicine as a tool for prevention: a primary care pilot study”. Accepted as a poster presentation at the 41st Annual Meeting of North American Primary Research Group, Ottawa, Ontario, November 9-13, 2013. 43. Nicholls SG, Etchegary H, Carroll JC, Castle D, Lemyre L, Potter BK, Little J, Wilson BJ, on behalf of the CIHR Emerging Team in Genomics and Screening. “Context is complex: attitudes to incorporating genomic risk profiling into population screening programs”. Accepted as an oral presentation at the American Society of Human Genetics (ASHG) conference, Boston, USA, October 22-26, 2013 42. Harrison D, Sampson M, Fuller A, Pound C, Abdulla K, Cumber J, Barrowman N, Nicholls S. “Too many screaming babies: A systematic review of pain management practices during immunizations on YouTube.” Accepted as a poster presentation at the Canadian Association of Pediatric Health Centres (CAPHC) Annual Conference, Toronto, Canada, October 2023, 2013 41. Nicholls SG, Brehaut JC, Arim RG, Carroll K, Perez R, Shojania KG, Man-Son-Hing M, Grimshaw J, Poses R. Stated barriers and impact on proposed warfarin prescription for atrial fibrillation: A survey of Canadian physicians. Interprofessional Stroke Education Day ‘Together we do make a difference!’, Ottawa, Ontario, September 30, 2013. 40. Brehaut J, Klein D, Poses R, Wigton R, Tape T, Grimshaw J, McAllister F; Nicholls S, Carroll K, Helis E. “Development of a multisource feedback tool designed to increase appropriate use of treatments for atrial fibrillation among family physicians”. KT Canada Summer Institute on Knowledge Translation, Hamilton, Ontario, June 17-19, 2013
21 39. Wilson B, et al “Personalized Health Literacy: Promoting Understanding of Personalized Medicine for Individual Health Decisions”. Accepted as an oral presentation at the annual Canadian Public Health Association (CPHA) conference, Ottawa, Ontario, Canada, June 9-12, 2013. 38. Catley C, Little J, Nicholls S, Etchegary H, Taljaard M, Carroll J, Castle D, Allanson J, Wilson B. “Personalized medicine as a tool for prevention: A knowledge translation pilot study”. Accepted as an oral presentation at the annual Canadian Public Health Association (CPHA) conference, Ottawa, Ontario, Canada, June 9-12 2013. 37. Tessier L, Potter B, Chakraborty P, Carroll J, Etchegary H, Nicholls S, Castle D, Lemyre L, Little J, Wilson B, Allanson J, Miller F, on behalf of the CIHR Emerging Team in Genomics and Screening. “Children’s family health history: parental perspectives.” Accepted as an oral presentation at the annual Canadian Public Health Association (CPHA) conference, Ottawa, Ontario, Canada, June 9-12 2013. 36. Nicholls SG. “Newborn screening: Choice, consent, or compliance?” Accepted as a poster presentation at the annual Canadian Public Health Association (CPHA) conference, Ottawa, Ontario, Canada, June 9-12 2013. 35. Harrison D, Sampson M, Fuller A, Pound C, Abdulla K, Cumber J, Barrowman N, Nicholls S. “Too many screaming babies: A systematic review of pain management practices during immunizations on YouTube.” International Congress of Pediatrics 2013 (ICP). Melbourne, Australia. August 24-29, 2013. 34. Nicholls, SG., Etchegary, H., Potter, BK., Castle, D., Carroll, JC., Lemyre, L., Little, J., Wilson, BJ, on behalf of the Emerging Team in Genomics and Screening. “Parents’ attitudes towards genomic risk profiling for risk of type 1 diabetes as part of newborn screening”. Accepted as a poster presentation at the Canadian Newborn and Child Screening Symposium, Ottawa, Ontario, 11-12 April 2013. 33. Nicholls, SG., Southern, KW. “Considering consent: Factors influencing parental perceptions of decision quality when accepting newborn screening”. Accepted as an oral presentation at the Joint Meeting of the Newborn Screening and Genetic Testing Symposium and International Society for Neonatal Screening (NBSGTS-ISNS), Atlanta, GA, 5-10 May 2013 32. Nicholls, SG., Wilson BJ, Etchegary H, Craigie SM, Castle D, Carroll JC, Little J, on behalf of the CIHR Emerging Team in Genomics and Screening. “Personalizing public health: Public attitudes towards genomic risk profiling as a component of routine population screening”. Accepted as a poster at ‘Genomics: The Power and the Promise’, Ottawa, Ontario, 27-28 November 2012. 31. Nicholls SG, Wilson BJ, Craigie S, Etchegary H, Castle D, Carroll JC, Potter BK, Lemyre L, Little J, on behalf of the CIHR Emerging Team in Genomics in Screening. “Public perspectives regarding personalized medicine and genomic risk profiling within colorectal cancer screening” Accepted as a poster presentation at the 62nd Annual Meeting of the American Society of Human Genetics (ASHG), San Francisco, California, 6-10 November 2012. 30. Wilson BJ, Carroll JC, Nicholls SG, Craigie SM, Etchegary H, Castle D, Potter BK, Little J, Lemyre L, on behalf of Emerging Team in Genomics in Screening. “Personalized health
22 literacy in the age of personalized medicine: results from a deliberative public engagement exercise”. Accepted as an oral presentation at the 62nd Annual Meeting of the American Society of Human Genetics (ASHG), San Francisco, California, 6-10 November 2012. 29. Etchegary, H, Wilson BJ, Craigie SM, Nicholls SG, Castle D, Carroll JC, Allanson J, Potter BK, Chakraborty P, on behalf of CIHR Emerging Team in Genomics in Screening. “Dynamics, definitions and discrepancies: Public perspectives on the systematic collection and use of family health history in routine health care”. Accepted as an oral presentation at the 62nd Annual Meeting of the American Society of Human Genetics (ASHG), San Francisco, California, 6-10 November 2012. 28. Wilson BJ, Craigie, SM., Etchegary H, Nicholls, SG, Castle D, Little J, Allanson J. “Public perceptions of educational needs in personalized medicine”. Accepted as a poster presentation at the 140th American Public Health Association (APHA) Annual Meeting, San Francisco, California, October 27 - 31, 2012. 27. Craigie, S., Nicholls, SG., Wilson BJ on behalf of the CIHR Emerging team in Genetics in Screening. “Public perceptions of genomic risk profiling for assessing risk of colorectal cancer”. Accepted as an oral presentation at the annual Canadian Public Health Association (CPHA) conference, Edmonton, Alberta, Canada, June 11-14 2012. 26. Nicholls, SG., Craigie SM, Etchegary H, Castle D, Carroll J, Little J, Potter BK, Chakraborty P, Lemyre L, Wilson BJ on behalf of the CIHR Emerging team in Genetics in Screening. “Attitudes to genomic profiling within colorectal cancer screening in a population routinely offered screening.” Accepted as an oral presentation at the annual American College of Medical Genetics (ACMG) conference, Charlotte, North Carolina, 27-31 March 2012. 25. Nicholls, SG., Southern, KW. "Parental selection and use of information when learning about newborn bloodspot screening." Accepted as a poster at the annual North American Cystic Fibrosis Conference (NACFC), Anaheim, California, USA, 2-5 November 2011. 24. Nicholls, SG. “Parental reflections on choice and decisions to accept newborn bloodspot screening.” Accepted as a poster at the 12th International Congress on Human Genetics (ICHG)/ 61st Annual Meeting of the American Society of Human Genetics (ASHG), Montreal, Canada, 11-15 October 2011. 23. Nicholls SG, Williams, G, on behalf of the IDEFICS consortium. “The parent vs the state: responsibility in childhood obesity.” Accepted as an oral presentation at the 18th European Congress on Obesity ECO2011, Istanbul, Turkey, 25-28 May 2011 22. Nicholls, SG, Voigt, K, Siani, A, De Henauw, S, Marild, S, Molnár, D, Moreno, LA., Tornaritis, M, Veidebaum, T, Pigeot, I, Ahrens, W, on behalf of the IDEFICS consortium. Price strategies and health inequalities: support for taxation of unhealthy foods among lowincome groups in European countries. Accepted as a poster with presentation at the "Promoting Health Equity: Action on the Social Determinants of Health" conference, Toronto, Canada, 11-12 February 2011. 21. Nicholls, SG, Williams, G, Wickins-Drazilova, D, Siani, A, De Henauw, S, Marild, S, Molnár, D, Moreno, LA., Tornaritis, M, Veidebaum, T, Pigeot, I, Ahrens, W, on behalf of the
23 IDEFICS consortium. Public attitudes toward taxation and subsidisation as obesity intervention measures: results from the IDEFICS parental questionnaire. Accepted as a poster with presentation at the European Childhood Obesity Group (ECOG) meeting “ECOG 2010 and beyond. Taking childhood obesity off the menu.” 17-20 November 2010. 20. Nicholls, SG, Williams, G, Wickins-Drazilova, D, Siani, A, De Henauw, S, Marild, S, Molnár, D, Moreno, LA., Tornaritis, M, Veidebaum, T, Pigeot, I, Ahrens, W, on behalf of the IDEFICS consortium. Money's too tight (to mention): Taxation and subsidisation as obesity intervention measures. Accepted as a poster at the IDEFICS - 4th Meeting of the general assembly 8-12 November 2010. 19. Wickins-Drazilova D, Nicholls S, Williams G, Börnhorst C, Grafström L, De Henauw S, Marild S, Molnar D, Aznar LAM, Pigeot I, Siani A, Tornaritis M, Veidebaum T and Ahrens W, on behalf of the IDEFICS consortium. Parental views on public-policy options regarding healthy eating. Accepted as a paper for the 9th Congress of the European Society for Agricultural and Food Ethics (EurSafe), 16-18 September 2010. 18. Nicholls SG. Modelling parental decisions for newborn bloodspot screening. Paper presented at 33rd Research Student Conference in Probability and Statistics, 12-14 April 2010. 17. Nicholls SG. PGD: Hype or Hope? Paper given at the Regional meeting of the Postgraduate Forum on Genetics and Society (PFGS) 20th November 2009. 16. Nicholls SG. 'To me it was just one thing that happened': parental consent and newborn bloodspot screening. Paper given at the British Sociological Association Medical Sociology Annual Conference, Manchester, UK. 3rd September 2009 15. Nicholls SG. From knowledge to understanding in newborn bloodspot screening. Implications and issues for increased parental education. Paper given at the Postgraduate Forum on Genetics and Society (PFGS) colloquium 12, December 2008. 14. M. McAllister, K. Payne, S. Nicholls, R. Macleod, H. Middleton-Price, D. Donnai, L. Davies “Evaluation of clinical genetics services - a qualitative study identifying outcome measures” Accepted as spoken presentation at the European Meeting on Psychosocial Aspects of Genetics (EMPAG) May 2006. 13. Payne K, Nicholls S, McAllister M, MacLeod R, Donnai D, Davies LM. Developing outcome measures for genetics services: a Delphi survey. Society of Medical Decision Making, 10th Biennial European Meeting, June 2006 12. Payne K, Nicholls S, McAllister M, MacLeod R, Donnai D, Davies LM. Genetics professionals’ views of outcome measures for genetics services: a Delphi survey. Accepted as an poster presentation at the International Congress of Human Genetics Conference, Brisbane, August 2006 11. Nicholls S, McAllister M, Payne K, MacLeod R, Middleton-Price H, Donnai D, Davies LM. Evaluating clinical genetics services and the involvement of service users. Involve Conference, 5th National Conference ‘People in Research’, September 2006 10. McAllister M, Nicholls S, Payne K, MacLeod R, Middleton-Price H, Donnai D, Davies
24 LM. Process and outcome in clinical genetics services: a new model developed from qualitative research. Accepted as a poster presentation at the British Society of Human Genetics Conference, September 2006 9. Nicholls S, Hyatt J, Slattery R, Donnai D, Middleton-Price HR. “Human Genetics and Society: a novel public engagement activity” Accepted as a poster presentation at the Annual Meeting of the British Society of Human Genetics, York, September 2005. 8. Davies L, Payne K, McAllister M, Nicholls S, Macleod R, Middleton-Price H and Donnai D. “Developing appropriate models of service delivery in clinical genetics“ Accepted as a poster presentation at Central Manchester and Manchester Children’s University Hospital NHS Trust Healthcare Science Week/ Research & Development Exhibition, October 2004. 7. Nicholls S, Middleton-Price H, and Davies L. “Making Written Information More Accessible” Accepted as a poster presentation at Central Manchester and Manchester Children’s University Hospital NHS Trust Healthcare Science Week/ Research & Development Exhibition, October 2004. 6. McAllister M, Payne K, Davies L, Nicholls S, Macleod R, Middleton-Price H and Donnai D. “How effective are clinical genetic services?” Accepted as poster presentation at the Annual Meeting of the American Society of Human Genetics, Toronto, Canada, October 2004. 5. McAllister M, Payne K, Davies L, Nicholls S, Macleod R, Middleton-Price H and Donnai D. “How can we measure whether clinical genetic services are effective?” Accepted as a poster presentation at the Annual Meeting of the British Society of Human Genetics, York, September 2004. 4. Davies L, Payne K, McAllister M, Nicholls S, Macleod R, Middleton-Price H and Donnai D. “Developing appropriate models of service delivery in clinical genetics”. Accepted as a poster presentation at the Annual Meeting of the British Society of Human Genetics, York, September 2004. 3. Nicholls S, Middleton-Price H, and Davies L. “Making Written Information More Accessible” Accepted as a poster presentation at the Annual Meeting of the British Society of Human Genetics, York, September 2004. 2. McAllister M, Payne K, Nicholls S, Macleod R & Davies L. “Towards valuing outcomes and preferences for clinical genetics services”. Poster presentation at European Meeting on Psychosocial Aspects of Genetics, Munich, June 2004. 1. Payne K, McAllister M, Davies D, Nicholls S, Macleod R & Middleton-Price H. “Towards valuing outcomes for genetic counselling services”. Paper presented at the Oxford Genetics and Economics Workshop, April 2004. Official Reports 2. Interim Report of the CCTCC REB Accreditation Working Group. September 2015. 1. Nicholls S, Wilson S, Clancy T, Middleton-Price H. Disability and Reproductive Choice: Report of a Nowgen/Life Knowledge Park joint workshop. 2004; North West Genetics Knowledge Park (Nowgen).
