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REB Advanced Stream 2: Matters of Regional Differences, Privacy and RCR

Grace Karram Stephenson, PhD
Post-doctoral Fellow, Ontario Institute for Studies in Education, University of Toronto
Julia Hengstler
Professor, Educational Technologist, Vancouver Island University
Margaret Blakeney
Senior Policy Analyst, Secretariat on Responsible Conduct of Research
Delilah Ofosu-Barko, BMSc.
Corporate Manager, Research Operations and Project Management, Trillium Health Partners
Catherine Paquet
Director, Office of Research Ethics and Integrity, University of Ottawa
Stacey Page, PhD
Assistant Professor, Dept. of Community Health Sciences, University of Calgary
Thursday, April 26, 2018 - 08:30 to 16:30

1.  Multi-jursidictional Research Ethics Reviews: An Assessment of REBs at 70 Canadian Universities

Grace Karram Stephenson, Post Doctoral Fellow, Ontario Institute for Studies in Education, University of Toronto

Glen Jones, Dean, Ontario Institute for Studies in Education of the University of Toronto

Between June and December 2017, the Canadian chapter of the Academic Profession in the Knowledge Society (APIKS) embarked on a multi-jurisdictional review process at 70 publicly funded universities across Canada. After first obtaining ethical permission from their home institution (University of Toronto), each of the 70 institutions was sent an invitation letter along with the UT ethics approval certificate. The institutions were then asked whether a full or expedited review was required. This presentation will highlight four areas where institutions were aligned or have room to improve processes: Online forms, harmonization, security and revisions.

2.  Considering Regional Privacy Law in the Work of an REB: A BC Case Study

Julia Hengstler, Professor and REB member, Vancouver Island University (VIU); Chair Centre for Education & CyberHumanity (VIU); PhD student at Lakehead Univ., Brock University, & University of Windsor

 British Columbia's (BC) public sector privacy legislation, the Freedom of Information and Protection of Privacy Act (FIPPA, RSBC 1996 C-165) is among the most stringent privacy frameworks in Canada and North America.  Using a case study approach, this session will examine the importance of considering regional privacy laws in the work of a REB in a BC public post-secondary institution. The presenter will review TCPS2 content addressing regional privacy legislation, implications, and practical considerations ranging from understanding legal definitions of what constitutes personal information to considering privacy risks associated with online/cloud-based research tools. Although privacy legislation varies regionally, understanding the BC context can prompt REBs to consider how some of the highest levels of privacy legislation can influence REB work and provide opportunities for REBs across Canada to reflect on how their regional privacy legislation may affect their own work.

3. REBs and RCR

Margaret Blakeney, Senior Policy Analyst, Secretariat on Responsible Conduct of Research

This presentation aims to foster a discussion on issues that may arise when REBs receive an allegation that an institutional or tri-Agency policy has been breached.      

4. The intersection of research ethics & RCR – Exploring the challenges, strategies and practical approaches to balancing the dual institutional responsibility.

Delilah Ofosu-Barko, CAREB-ACCER Board of Directors, Corporate Manager, Research Operations and Project Management, Director Professional Development, Trillium Health Partners

Objective:  To review, discuss and address the intersection of research ethics and RCR through introduction of a principle-based accountabilities concept, review of a unique management framework and interactive case-based discussion.  This workshop will focus on:   

(1) Identifying how, why and when research ethics and RCR intersect; 

(2) Recognizing common, and uncommon challenges faced by REBs and Research Ethics Administrators in the face of RCR compliance issues; and 

(3) Provide strategies to address common challenges faced by REBs and Research Ethics Administrators in the face of RCR compliance issues. 

5. RCR and REBs, Respective Roles and Responsibilities  

Catherine Paquet, CAREB-ACCER Vice Chair, Director Office of Research Ethics and Integrity, University of Ottawa

Stacey Page, CAREB-ACCER Board of Directors, Assistant Professor, Department of Community Health Sciences, Chair Conjoint Health Research Ethics Board, University of Calgary

Speakers Biographies

Margaret Blakeney is a Senior Policy Analyst with the Secretariat on Responsible Conduct of Research. Ms. Blakeney’s role includes interpreting the Tri-Agency Framework: Responsible Conduct of Research (RCR Framework) and the Tri-Council Policy Statement: Ethical Conduct of Research with Humans (TCPS), outreach and education with respect to both policies, and supporting the work of the Panels on Research Ethics (PRE) and on Responsible Conduct of Research (PRCR) . She has previously held positions at SSHRC as a program officer and as SSHRC's Access to Information and Privacy Coordinator.

Julia Hengstler is an REB member at Vancouver Island University (VIU, Nanaimo, British Columbia). At VIU she chairs the Centre for Education & CypberHumanity, and works as a University Professor, M.Ed. supervisor, & Educational Technologist at the Faculty of Education. A student in the Joint Ph.D. in Educational Studies Program with Brock University, Lakehead University & University of Windsor in Educational Leadership & Policy, Julia focuses on the intersection between British Columbia's provincial privacy law and technology use in public schools. Julia holds a Certificate in School Management & Leadership (University of Victoria, BC), Master of Arts in Distributed Learning (Royal Roads University, Victoria, BC) & a Bachelor of Arts (English Literature) from Amherst College (Massachusetts, US). Julia is also a member of the Canadian Association for the Practical Study of Law in Education (CAPSLE) and the International Association of Privacy Professionals (IAPP). Julia's presentation credits include international conferences such as AERA's "Non Satis Scire: To Know Is Not Enough" (Vancouver, 2012), and AACE's World Conference on Educational Multimedia, Hypermedia and Telecommunications (Vancouver, 2007); as well as national conferences like the CAPSLE's “In the Land of Living Skies: Expanding Horizons in Education and the Law” (Saskatoon, SK, 2017) and IAPP's upcoming Canadian Privacy Symposium (Toronto, May 2018). She also presents on privacy topics at provincial conferences like the upcoming BC Teachers' Federation's (BCTF's) April 21, 2018 event, and provides in-service professional development sessions in districts across British Columbia. Her writing credits include, "British Columbia Teachers at the Crossroads: Standing at the Intersection of Web 2.0, Student Privacy Concerns, & Privacy Law" (CAPSLE 2017 conference proceedings, in press); "Private Behaviour & Teacher Professionalism: British Columbia’s Pivotal Shewan Case (1985-1987)" (CAPSLE 2017 conference proceedings, in press); “Managing Your Digital Footprint: Ostriches v. Eagles” in Education for a Digital World 2.0 Volume 1; “Open Source for Educators” (Chapter 8 in Education for a Digital World, Commonwealth of Learning, 2008); Adminfo (Dec. 2008 & Oct. 2007), and Academic Exchange Quarterly (June 2001). Julia shares a variety of technology-centred writing and papers via her WordPress blog, Be sure to read the posts and papers: “A K-12 Primer for British Columbia Teachers Posting Students’ Work” (May 2013) & “The Compliance Continuum: FIPPA & BC Public Educators” (April 2014). Find her on Twitter (@jhengstler) where she tweets on range of privacy and technology themes.

Delilah Ofosu-Barko: Having worked in the health research sector for over a decade, Delilah is passionate about the education, engagement and promotion of health research. She received a bachelor of medical sciences in biochemistry from the University of Western Ontario. With an appreciation for the spectrum of complexities, details and risks involved in health research, Delilah's understanding of the end-to-end research process has lead to her recognition as an established Research Administrator with a proven record of establishing and maintaining synergistic, dynamic and solution-focused teams.. Leading the Research Operations and Research Project Management departments across a multi-site community academic health care institution, Delilah is enhancing the enabling services available to researchers across Trillium Health Partners. She is an active member with the Canadian Association of Research Ethics Boards; as Director of Professional Development for the Board of Directors Delilah oversees a number of CAREB-ACCERs professional development activities. Delilah lends her expertise to the Peel Institute on Violence Prevention as a Senior Research Advisor and Scientific Committee Member. Previously, she served as a Research Methods Tutor and Guest Lecturer for the Mississauga Academy of Medicine. Delilah’s commitment to education in health research is evident in the ongoing learning opportunities she provides for her teams and to researchers across the organization, as well as through her mentorship of research interns and co-op students. Her research interests include public accountability and responsibility in health research, with a particular interest in health research governance and accountability frameworks.

Stacey Page: Dr. Stacey Page, is an Assistant Professor in the Department of Community Health Sciences, and Chair of the Conjoint Health Research Ethics Board at the University of Calgary. She is a member of Mount Royal University's Human Research Ethics Board and the Research Ethics Board of the Alberta College of Art and Design.  She has served on the Executive of the Canadian Bioethics Society and is currently on the Board of Directors of the Canadian Association of Research Ethics Boards.  Stacey is working with the Panel on Research Ethics, Cell Line Advisory Subcommittee, as it considers issues relating to cell line research. She is an active researcher with current interests in the area of secondary data use, biobanking and precision medicine.

Catherine Paquet has worked in research ethics since 2002 and took on the role of Director, Office of Research Ethics and Integrity (OREI) at the University of Ottawa in 2010. Her main responsibilities include the management of the ethics review process and boards, research ethics and integrity related policy development and the development and implementation of educational strategies relating to research ethics and integrity for the university community. She is also the research integrity officer for the University of Ottawa and is therefore responsible for receiving allegations of breaches of responsible conduct of research as well as ensuring the proper conduct of inquiries and investigations. She has been a member of the Canadian Association of Research Ethics Boards (ACCER-CAREB) since 2003 and is currently Vice-President. She is also a member of Public Responsibility in Medicine and Research (PRIM&R) and obtained a certificate in research integrity from the Society of Research Administrators (SRA) in 2011. Catherine Paquet travaille en éthique de la recherche depuis 2002 et a assumé le poste de directrice du Bureau d'éthique et d'intégrité de la recherche (BÉIR) à l'Université d'Ottawa en 2010. Ses principales responsabilités comprennent la gestion du processus et des comités d'éthique, l'élaboration de politiques liées à l'intégrité et l’éthique de la recherche ainsi que l'élaboration et la mise en œuvre de stratégies éducatives relatives à l'éthique de la recherche et à l'intégrité. Elle est également l'agent de l'intégrité de la recherche pour l'Université d'Ottawa et en tant que tel, est responsable de recevoir les allégations d'infractions à la conduite responsable de la recherche et de veiller à la bonne conduite des enquêtes et des investigations. Elle est membre de l'Association canadienne des comités d'éthique de la recherche (CAREB-ACCER) depuis 2003 et est actuellement vice-présidente de l’Association. Elle est également membre de Public Responsibility in Medicine and Research (PRIM & R) et a obtenu un certificat en intégrité de recherche de la Society of Research Administrators (SRA) en 2011.

Grace Karram Stephenson leads the Canadian team administering the Academic Profession in the Knowledge Society study, a survey of university faculty. Grace and her team love working with research ethics boards at Canada's universities and have spoken to 71 at last count. Grace has worked for higher education institutes in Canada, the USA and the Fiji Islands and her past research explored university programs the Malaysia and the UAE. She writes regularly for University World News and University Affairs.