Programme

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  • Mercredi 10 avril


  • Jeudi 11 avril


  • Vendredi 12 avril


  • 08:30 - 10:00
    REB Basics has been designed for REB administrators within their first two years in the field. This workshop concentrates on key areas of understanding necessary for successful REB administrators. These include the history of research ethics and requirements and standards developed in response to this history; how REB offices run and relate to other areas within the research enterprise of an institution; how to establish and manage an effective and efficient REB; requirements for US-funded research; and complying with relevant privacy legislation. This session is meant to be engaging and dynamic, providing opportunities for discussion and questions throughout. Keywords: History, requirements, management, training, fundementals
    VOLET 1- Principes de base du CER
    Where
    Meeting Room # 9-12

  • 08:30 - 10:00
    The introduction by the First Nations Health and Social Secretariat of Manitoba, including the following: -Elder Prayer -Introduction Activity -History of self-determination, culture and traditions in connection with FN stories and research
    VOLET 2 - SSDSPNM
    Where
    Meeting Room # 3

  • 08:30 - 10:00
    Keywords: Multijurisdictional review
    VOLET 3 - Examen multijuridictionnel
    Where
    Meeting Room # 2

  • 08:30 - 10:00
    This workshop will examine the concept of 'resilience' - a concept which has gained a great deal of popularity across the social and health science fields, as well as among governmental and policy level professionals. In addition to highlighting approaches to resilience, this session will call attention to the significant backlash from communities against researchers and politicians who would play fast-and-loose with notions of resilience in ways that skirt fundamental structural inequalities and reinforce unjust power relations which require individuals and communities to be especially "resilient" in the first place. Implications for ethical review boards will be discussed. Keywords: Resilience, community, power, tools
    Volet 4-Outils et astuces CER
    Where
    Meeting Room # 1

  • 10:30 - 12:00
    Keywords: History, requirements, management, training, fundementals
    VOLET 1- Principes de base du CER
    Where
    Meeting Room # 9-12

  • 10:30 - 11:00
    VOLET 2 - SSDSPNM
    Where
    Meeting Room # 3

  • 10:30 - 12:00
    Many attempts have been made to streamline the research ethics review processes amongst multiple institutions while maintaining the autonomy of the individual participating institutions. Balancing the need for ensuring that all parties feel their institutional concerns have been met with the push for efficiency can be challenging. Different institutions have different interests and expertise, making gaging the level of review and involvement complicated. BC is 10 years into its ethics harmonization journey. The process has been dynamic with many lessons learned. This talk will present the pitfalls and challenges as well as successes of the BC journey to ethics harmonization. It will present practical solutions for gaining consensus among institutions and walk through the review models that are presently being used. In doing this, we intend to show how respect and truly formulating a community of research ethics results in continuing shared success, relationship building across institutions can transform stalemates, and static reviews can become active and participatory partnerships. Keywords: Harmonization, collaborative relationships, research ethics
    VOLET 3 - Examen multijuridictionnel
    Where
    Meeting Room # 2

  • 10:30 - 11:15
    Island Health and the Penelakut First Nation are collaborating to understand the experiences of patients receiving care from a clinical pharmacist. In writing the ethics submission, we first sought to better understand the traditions of the Penelakut First Nation. This involved sharing, understanding and communicating with key members of the First Nation leadership as well as Penelakut Clinic health care providers. These discussions involved researchers asking difficult questions about the traumatic history of the Penelakut First Nation as well as hearing the emotionally heavy stories from providers of the health clinic and members of the Penelakut First Nation. These discussions were possible with the understanding that the researchers are here to listen and to walk with members of the Penelakut Tribe on a shared journey of understanding and healing. This work is a potentially unique example of collaborative, patient-oriented, and culturally safe research done in a good and ethical way. It respects the right of ownership, access, control and possession of data for First Nations communities, and goes further to incorporate indigenous cultural practices into the research protocol, building a trustful and a sustainable relationship. Our workshop will include strategies to engaging in a meaningful, open and understanding dialogue with representatives of Indigenous groups who have experienced trauma. Moreover, our workshop will outline the process of including cultural traditions within your research protocol with the intent of providing the best possible culturally sensitive support to your study participants. This workshop hopes to engage other researchers in a positive dialogue on integrating cultural sensitivity within their research. We look forward to presenting this work and to share our learning with all of you. Keywords: Understanding, collaboration, culturally-informed care
    Volet 4-Outils et astuces CER
    Where
    Meeting Room # 1

  • 11:00 - 12:00
    This topic will be followed by a group discussion on "How to build trust working in a First Nations community"
    VOLET 2 - SSDSPNM
    Where
    Meeting Room # 3

  • 11:15 - 12:00
    Keywords: Indigenous research
    Volet 4-Outils et astuces CER
    Where
    Meeting Room # 1

  • 13:00 - 15:00
    Keywords: History, requirements, management, training, fundementals
    VOLET 1- Principes de base du CER
    Where
    Meeting Room # 9-12

  • 13:00 - 14:00
    In this session the following will be covered: -Group discussion on "How do we ensure good" -Challenges and successful examples of the REB process and working with FN communities (both Indigenous and non- Indigenous researchers)
    VOLET 2 - SSDSPNM
    Where
    Meeting Room # 3

  • 13:30 - 15:00
    In 2010 the Colleges Ontario Heads of Applied Research (HAR) Subcommittee on research ethics was established to promote excellence and alignment of Research Ethics Board (REB) review processes across the college system. One step to fulfill that mandate was to introduce a common Multi-college REB Application form for multi-site research. That form is now accepted at all publicly funded Ontario colleges with REBs. Given the increased focus on applied research in the Ontario college system, the HAR Research Ethics Subcommittee (RES) with the support of the Secretariat on Responsible Conduct of Research developed a multi-college review process (Expert Panel). The intent was to streamline ethics review for the researcher yet stay true to the spirit of Chapter 8 on Multi-Jurisdictional Review (TCPS2, 2014) by providing across Ontario College REB representation on this expert panel. After being pilot tested, the process was launched in September 2016 with great success. At present 21 colleges are participating in this process, and between September of 2016 and January 2019 this Expert Panel has reviewed 38 application. This session will provide a narrative of how this process was developed and how it works. Keywords: Harmonization, multi-college review, procedure, multi-site, Ontario, collaboration, process, multi jurisdictional
    VOLET 3 - Examen multijuridictionnel
    Where
    Meeting Room # 2

  • 13:30 - 14:00
    Exemptions in research ethics, as provided by the TCPS2 (2014) are useful for REB administrators; however, they can present challenges around ethical issues that warrant review, on a case-by-case basis. What happens when something that is technically exempt has conflicting or additional ethical conversations that need to happen? Navigating a case that involves data from Indian residential schools and Article 2.2, this conversation will aim to consider how a principled means in the treatment of the data necessitates greater oversight that what exemptions as per the TCPS require. Keywords: Exempt review
    Volet 4-Outils et astuces CER
    Where
    Meeting Room # 1

  • 14:00 - 15:00
    Research ethics boards play a central role in ensuring that humans are not unduly harmed when participating in research. One need only look upon historical instances of egregious harm to appreciate the moral importance of ethical oversight. The evolution of ethical codes and policies has done well to buttress and solidify our society’s commitment to ethical research, while also being responsive to the needs of researchers. In Canada we are fortunate to have a robust and meticulously crafted national research ethics policy to help guide researchers and research ethics boards alike. Unfortunately, the good intentions of the latter are not always received as such by the former. This is to say that rather than viewing the efforts of REBs as additive to the ethical standing of their research, evidence suggests that some researchers view ethical review as little more than a bureaucratic exercise performed by meddlesome, overzealous, and misguided REBs. It is indeed troublesome when researchers come to view REBs as more of a hindrance than a help to the work they do. The term “mission creep” captures the concern of some researchers who believe that control over the research endeavour, rather than public safety per se, is the endgame of REBs. This session involves a short overview of the mission creep concern, followed by ample time to share examples, experiences, and solutions (attempted or otherwise) in a generative and collegial spirit. Keywords: Mission creep, proportional review, decision-making, oversight, boards
    Volet 4-Outils et astuces CER
    Where
    Meeting Room # 1

  • 14:00 - 15:00
    Challenging and successful examples of the REB process and working with FN communities(both Indigenous and non-Indigenous researchers)
    VOLET 2 - SSDSPNM
    Where
    Meeting Room # 3

  • 15:30 - 16:30
    Keywords: History, requirements, management, training, fundementals
    VOLET 1- Principes de base du CER
    Where
    Meeting Room # 9-12

  • 15:30 - 16:30
    Hypothetical Case - Researcher X at your institution is a member of a team of researchers from multiple universities that have formal links to a local hospital. The team will be recruiting and doing data collection and analysis at the local hospital. REB review is sought, approval is granted, and recruitment and data collection begin at the local hospital. Researcher X has a formal affiliation with the hospital, but is using your institution’s name/ affiliation in the hospital’s REB application and for future dissemination. Your institution does not have a formal agreement with the hospital. Researcher X, believing that since no data collection is happening at your institution, and because others have not sought ethics approval at their home institutions (unknown to your researcher, institutional agreements are in place between those other institutions), does not seek ethics approval at your institution. Researcher X comes forward to you seeking information and clarification on something and you uncover this matter/project. What do you do? This session will explore some of the complexities and challenges associated with multijurisdictional research from both the researcher and REB perspective. Panelists from Ryerson University will present some of these challenges, review relevant sections of the TCSP2, and discuss some potential ways forward. Most importantly, this session poses a series of questions to be addressed by session attendees in small-group discussions and then shared widely with others in the room. Keywords: Multijurisdictional research, research agreements, compliance
    VOLET 3 - Examen multijuridictionnel
    Where
    Meeting Room # 2

  • 15:30 - 16:00
    VOLET 2 - SSDSPNM
    Where
    Meeting Room # 3

  • 15:30 - 16:30
    Through a series of guided interactive case-based discussions, debate and use of a principle-based research ethics & RCR accountability concept and decision-making framework attendees will work through a variety of case scenarios. Through case-based discussion and debate, attendees will: • identify how, why and when compliance related-scenarios should involve the REB; • determine when and how to involve additional stakeholders (internal and external to the institution) within the research ethics compliance process; and • discuss strategies in addressing common challenges faced by REBs and Research Ethics Administrators in the face of compliance issues Keywords: Compliance, RCR, research integrity, tools, REB accountability
    Volet 4-Outils et astuces CER
    Where
    Meeting Room # 1

  • 16:00 - 16:30
    VOLET 2 - SSDSPNM
    Where
    Meeting Room # 3

  • 08:15 - 08:30
    Catherine paquet, présidente de CAREB-ACCER; Directrice, bureau de l'éthique de la recherche et de l'intégrité, Université d'Ottawa
    Séances Plénières
    Where
    Meeting Room # 4-8

  • 08:45 - 10:00
    The announcement of the “CRISPR babies” reignited the debate about the ethical, legal and social implications of human germline gene editing. Despite having been conducted in the context of a clinical trial, Dr. Jiankui He’s research appears to have violated both Chinese regulations and standard ethical procedures, as well as internationally accepted research and bioethical standards. What does this mean for Canada and for research ethics governance more broadly? Keywords: Gene editing, CRISPR, research ethics, governance
    Conferenciers principaux
    Where
    Meeting Room # 4-8

  • 10:30 - 10:40
    Update: Secretariat on Responsible Conduct of Update: OHRP
    Séances Plénières
    Where
    Meeting Room # 4-8

  • 10:40 - 10:45
    Séances Plénières
    Where
    Meeting Room # 4-8

  • 10:45 - 12:00
    The paradigm is shifting in health research involving Indigenous Peoples: research with Indigenous Peoples at a meeting place of multiple worldviews—the ethical space – instead of research on or about them. Advancements within both Indigenous and academic communities are driving the shift and creating a pathway for researchers, Research Ethics Boards (REBs), and Indigenous Peoples to collaborate to find solutions that address the policy-to-practice gap that currently exists in research ethics review. The emergent paradigm is an invitation for researchers and REBs to think, know and act differently – to do research with Indigenous Peoples leading. This presentation will emphasize key findings from a 2018 study with 18 REB members, chairs, administrators, and research ethics policy experts across Canada. Participant contributors suggested ways to improve the theory, application, and practice of ethics for research with Indigenous Peoples, including office hours dedicated to Indigenous research ethics, asking the ‘right’ questions in protocols and forms, and having Indigenous Peoples sit on the institutional REB. All participant contributors called on researchers, REBs, institutions, and funding agencies to improve how we do research/review with Indigenous Peoples. This talk will offer a series of innovations and practices that are currently underway at REBs across Canada to demonstrate the possibilities of doing differently. Keywords: Indigenous research ethics, REB practice, research relationships, reconciling research
    Séances Plénières
    Where
    Meeting Room # 4-8

  • 13:00 - 13:15
    Séances Plénières
    Where
    Meeting Room # 4-8

  • 13:15 - 13:30
    Keywords: Health research, emerging ethical issues
    Séances Plénières
    Where
    Meeting Room # 4-8

  • 13:30 - 15:00
    This talk provides an overview of the ethical issues that arise when working with young people and technology, drawing on over 20 years of experience in the field. Dr. Steeves will discuss, among other issues, the special challenges of recruiting youth, the ethical pitfalls of doing youth participatory action research, and the importance of approaching consent as a moment to demonstrate respect for youth participants and negotiate a relationship based on trust. Keywords: Youth research, privacy, equality
    Conferenciers principaux
    Where
    Meeting Room # 4-8

  • 15:00 - 15:45
    Click on Poster Session Details to view presentations & speakers
    Repas et Rafraîchissements

  • 15:45 - 16:45
    Within the formal learning institution, creative practices sit in an interesting position with respect to research ethics. The Tri-Council Policy Statement, Article 2.6, that states creative practice activities, or the creation of works of art, in and of themselves, do not require research ethics review. Although there is no organization of post-secondary art institutions in Canada, Universities Canada speaks of research meeting the highest standards of ethics, as mandated by the TCPS2. The College Art Association, a principal professional association in the United States, recognizes that a universal code of ethical conduct for artists, while potentially useful, is problematic as such a code could potentially limit legitimate expression. Creative practices may affirm conventional behaviors and community standards, and equally likely, the arts may challenge, criticize, and transgress those standards. Post-secondary art institutions frequently have policies that support artistic and intellectual freedom to examine, question, speculate, and comment on any issue within the law. Challenges arise for artists, research ethics boards, and institutions when the boundaries of research and creative practice blur. At what point does art become research? TCPS2 defines research as a disciplined or systematic investigation intended to extend knowledge. When artists seek to collect/record/document as part of their practice, to involve the public in the creation of art, or to disseminate either the art or public reactions to art, the art arguably becomes research. To broaden the discussion, some artists utilize strict methods of social science practices, while others identify their creative practices as research in order to achieve funding eligibility status, on par with their institution’s definition of research. In such cases, particularly where the art may be controversial, what obligations do artists and institutions have in terms of public protections? When art is construed as research does the mandate to review fall to an REB? Challenges that arise include arts colleges/programs awareness of research ethics, expertise, the capacity to support REBs, and a low volume of projects requiring review. Potential solutions include an in-house REB, in-house ethics review, and partnering with other organizations. 
 Best practice suggests that artists consider their own ethical responsibilities and implications of creating and disseminating their work. For example, the title of this proposal refers to a gallery exhibition in Nicaragua in which an artist said he captured a dog on the street and confined it in a gallery without food or water. He stated his goal was to draw attention to the fact people worried more about starving animals in the world than they did about starving people. The dog was treated humanely and not harmed in any way but a popular story hit the press that the dog was being starved. World communities were outraged and petitions demanded that the “artist” be banned from future shows. What would an in-house REB tend to do if this creative practice came forward for review or oversight? While the answer is not censorship of the arts, the question remains: What do institutions do when their members wish to create art that transcends ethical norms or crosses over into arenas historically established as research? Recent art world examples include art as protest, exhibiting problematic historic images, paying minimum wage to tattoo on bodies, involving spectators in performance art, provoking audiences without warning, intending to inflict repeated self-harm, creating a tunnel in which entering means agreeing to be physically attacked. The presenters will examine a number of case studies that highlight the intersection of creative practice activities, research ethics and practice ethics in the arts. Considered will be questions such as: What is best practice in such scenarios? How do university REB’s touch upon practices? Should creative activities be exempt from REB review in all instances and if not what are the determinants? The presentation promises to be provocative and hopefully to begin to open up an ongoing discourse. Keywords: Art research ethics
    Séances de groupe
    Where
    Meeting Room # 1

  • 15:45 - 16:45
    The informed consent process is a keystone to the ethical conduct of research in human subjects, yet it is one fraught with challenges. The traditional default in many situations, to date, has been to rely on a written paper document that we assume provides information in a clear and understandable format. The signature that accompanies this document is also assumed to ensure participant comprehension of study details and the associated risks involved. However, current processes often fail to deliver these basic requirements. As technology continues to rapidly advance and become more and more integrated into everyday life, it is incumbent on Research Ethics Boards (REBs) to lead the trend to evaluate alternative, application-based methods of improving the informed consent process for both participants and researchers. Research involving children and adolescents is especially well situated to explore non-traditional consent mechanisms, as young people today are intimately linked to technology and digital formats. Our interactive presentation will explore the inherent strengths and weaknesses of adopting an application based consent process and what implications that will have for participants researchers, and Research Ethics Boards. Keywords: App, consent
    Séances de groupe
    Where
    Meeting Room # 4-8

  • 15:45 - 16:45
    Unwanted, intrusive thoughts of harming one's infant are experienced by approximately 50% of new mothers. These thoughts can be extremely upsetting to the women who experience them; provoking fears about their mental stability and ability to mother. Perinatal caregivers often worry that these thoughts may be harbingers of child abuse. However, the evidence suggests that the occurrence of these thoughts is a normative postpartum experience, and is much more likely to lead to the onset and/or exacerbation of obsessive compulsive disorder (OCD), a potentially debilitating anxiety disorder, than to child harm. Responding appropriately to women who report these kinds of thoughts is critical for mothers and their infants. In order to better understand the relationship, if any, between these types of thoughts and maternal aggression towards the infant, we conducted a province-wide study of new mothers' unwanted, intrusive thoughts of harm and their relationship with child harming behaviours and OCD. A total of 850 women participated. Assessment included interviews and questionnaires in pregnancy and the postpartum. In this presentation I will discuss the study findings, and the ethical issues relevant to studies in which assessments of harm thoughts and potential child abuse are conducted. Specifically, I will outline the various steps we took to ensure the fully, informed consent of participants and protection of highly sensitive information. Keywords: Child harm, limits of confidentiality, anonymity
    Séances de groupe
    Where
    Meeting Room # 9-12

  • 15:45 - 16:45
    Visual research methods such as photovoice, are becoming more prevalent within qualitative research projects. In particular, due to its creation among Chinese women, photovoice has found a place within health and justice research conducted with marginalized populations, specifically Indigenous peoples. However, there are multiple ethical considerations that need to be undertaken to make sure that researchers are not increasing risk to those whose participate in the research. This presentation will focus on multiple photovoice research projects that I have conducted with Indigenous men and women, who at one time or continue to be involved in a street lifestyle. Working from the experiences of these two projects many issues involved which are important for ethics committees to take into consideration such as Indigenous methods/methodologies, the modification of photovoice, 'real time research', participant involvement, protection of researcher, and data governance. Thus, in order for research, and photovoice research to be conducted in a good way, a model of relational accountability must be established between the researcher and their partners. Along with these discussions, a focus will be had on the ethics of the photograph itself and what can be seen beyond the focus or intent of the photograph. Keywords: Indigenous research methods, photo voice, Indigenous methodologies, relational accountability
    Séances de groupe
    Where
    Meeting Room # 3

  • 15:45 - 16:45
    In a world of big data, cloud services, and social media, it can be difficult to know how to keep your data safe and secure. In a research environment with a wide variation in terms of technical literacy, the job of managing data gets even harder. In this presentation we will provide you with four simple tools to help you determine the risk level of your data and decide the safest and most ethical way to manage your data throughout its lifecycle, from collection to destruction. We will focus on the ways in which responsible digital data management can support diversity and inclusion and help us move toward a more equitable distribution of knowledge and power. From indigenous data sovereignty movements to the inclusion of rural and remote people though digital data transfer, responsible digital data management is a key part of promoting equity and our tools make it easy. Keywords: Digital, data, ethics, data lifecycle, data managment
    Séances de groupe
    Where
    Meeting Room # 2

  • 08:15 - 08:30
    Catherine paquet, présidente de CAREB-ACCER; Directrice, bureau de l'éthique de la recherche et de l'intégrité, Université d'Ottawa
    Séances Plénières
    Where
    Meeting Room # 4-8

  • 08:30 - 09:30
    Abstract: The Revised Common Rule in the United States includes the following provisions for informed consent: Informed Consent must provide “…information that a reasonable person would want to have in order to make an informed decision about whether to participate…” (.116(a)(4)) “key information…to assist a prospective subject… in understanding the reasons why one might or might not want to participate in the research.” (.116(a)(5)(i)) “…information… organized in a way that …facilitates the…understanding of the reasons why one might or might not want to participate”. (.116(a)(5)(ii)) What are the implications of these new requirements for the presentation of information in informed consent? This presentation will consider how the new requirements imply a more study-specific approach to informed consent in the interest of making informed consent more meaningful.
    Séances Plénières
    Where
    Meeting Room # 4-8

  • 09:30 - 09:40
    Executive Director Elisa Hurley will provide an update on PRIM&R's recent activities and initiatives, with an emphasis on online programming and resources that may be of interest to the CAREB community.
    Séances Plénières
    Where
    Meeting Room # 4-8

  • 09:40 - 09:45
    Séances Plénières
    Where
    Meeting Room # 4-8

  • 10:15 - 11:00
    In Canada, bioart is often undertaken within the category of research known as research-creation (RC). This term refers to research that incorporates creative or artistic inquiry into the methodology of the project. The innovative potential of RC has been increasingly recognized over the past couple decades with government and institutional funding that targets RC projects specifically. Since 2013, the Social Sciences and Humanities Research Council of Canada has awarded a total of over twenty million dollars to support projects with research-creation components. The question of when RC projects should be subject to ethics approval throws the much-contested question of epistemology in RC into the spotlight. Bioart sits at the intersection of two relatively elite fields of knowledge specialization and production: biotechnology and art. These specializations occupy different strata of the academic hierarchy, requiring credentials and disciplinary rigour that, historically, have tended to validate delineated specificities instead of similarities in research; in turn, these areas of expertise privilege credentialed mastery over other ways of knowing. This part of my presentation will draw from a co-authored paper, presented here with permission from my colleagues WhiteFeather Hunter, and Maya Hey. In the context of bioart, accounting for responsible research conduct can involve assessing unique situations that put the interests of artistic researchers at odds with regulators, collaborators, or institutions. I will present case studies from research-creation and bioart projects that contain issues of ethics and research integrity. These cases will be discussed by session participants and I will close the session with a brief overview of the outcomes of a major research project on responsible research conduct in research-creation that took place in Quebec. I was a research assistant on this provincially-funded, three-year project. Keywords: Research-creation, board, transdisciplinary, art, practice-based research
    Séances de groupe
    Where
    Meeting Room # 9-12

  • 10:15 - 11:00
    Research involving sexual and gender minority (SGM) youth highlights several vital considerations affecting an REB’s scope of responsibility. Historically, research involving participants under the age of 18 necessitated parental/guardianship consent. However, in recent years, researchers working with SGM-identified (such as lesbian, gay, bisexual, pansexual, trans, Two Spirit, queer, questioning, intersex) youth have identified how a requirement of parental/guardian consent infringes on participants’ right to privacy, their ability to choose freely and safely whether to participate, and ultimately their ability to engage in research that will benefit their own community. Drawing on their experiences conducting two national climate surveys on homophobia, biphobia, and transphobia in Canadian schools with youth participants, and of securing ethics approvals for both projects, the presenters will discuss some of the concerns and context-sensitive criteria for waivers of parental consent in research involving SGM youth. Keywords: Sexual and gender diversity, LGBTQ, education, mature minor, waiver of parental/guardian consent
    Séances de groupe
    Where
    Meeting Room # 1

  • 10:15 - 11:00
    Payments to participants in research are provided for a number of reasons, including reimbursement for out of pocket expenses, to compensate participants for their time and effort, or as an incentive. Some REBs have questioned whether or not providing payments presents a potential undue influence on the informed consent process or otherwise raises ethical concerns. In this presentation I will describe the the different dimensions of payments to research participants, and explore ethical issues that may arise when payment is offered. Recent recommendations by the U.S. Department of Health and Human Services Secretary's Advisory Committee for Human Research Protections will be reviewed as a potential framework for REBs that are asked to approve participant payments. Keywords: Ethics, payment, consent
    Séances de groupe
    Where
    Meeting Room # 2

  • 10:15 - 11:00
    Using case studies from two geographically and contextually diverse institutions – University of Victoria, and Aurora College – this talk explores the role of Research Ethics Boards in research that requires engagement and consultation with Indigenous communities. The case studies will explore important questions about jurisdictional boundaries, roles & responsibilities, and current practices in an urban and a northern setting. How does the REB situate itself to ensure researchers are meeting the requirements of Chapter 9 of the Tri-Council Policy Statement, while respecting Indigenous community autonomy and researchers’ academic freedom? We will use specific case study examples of the challenges and successes encountered by our REBs in reviewing Indigenous-engaged research to highlight some of the nuanced considerations REBs can take into account when applying key imperatives from Chapter 9. We acknowledge the vital importance of Indigenous voices in this area of research ethics practice. As non-Indigenous Research Ethics Board administrators, we have chosen not to frame this presentation as an opportunity to teach best practices but rather as a starting point for a conversation about the application of Chapter 9. We hope to facilitate discussion of strategies that REBs may employ to guide review of research that involves Indigenous peoples with the goal of preventing ‘ethics creep’, recognizing the autonomy of Indigenous communities, and fostering mutual respect between REB members, researchers, and the communities. Keywords: REB review, Indigenous-engaged research, Chapter 9
    Séances de groupe
    Where
    Meeting Room # 3

  • 10:15 - 11:00
    This workshop intends to investigate the ethics of an opt-out model of consent, when it is appropriate, how to define best practice, and understand the limits of this model. During this workshop, I will present a brief outline of the current literature in opt-out models in research, highlight key sections of the TCPS2 and other applicable guidance documents, in order to lay the groundwork for a rich discussion. I will then offer a series of case studies to facilitate group discussion and hone attention to the key issues. Group discussion will aim to answer the following questions: What are the limits of passive consent? How do REBs ensure passive consent has been properly obtained (i.e. participants have had sufficient opportunity to decline participation)? Should opt-out models be considered for youth participants, and if so what age ranges are appropriate? Particular attention will be paid to the “tipping point” – at what point, and under what circumstances, is passive consent no longer ethical? The goal of this workshop is to help develop a general understanding of passive consent and provide the opportunity to explore the nuances of this issue. Keywords: Consent, passive consent, opt-out models, youth
    Séances de groupe
    Where
    Meeting Room # 4-8

  • 11:00 - 11:45
    This session presents as a case study, "Non-Regular: Precarious academic labour at Emily Carr University of Art + Design," an award-winning and publicly-circulated artist's publication resulting from undergraduate coursework. For research ethics reviewers and personnel this case productively raises questions for discussion. How is the TCPS2 "creative practice" exemption implemented in art pedagogy? How do REBs review ethnographic methods when appropriated into non-ethnographic practice settings? What is the capacity of REBs to review projects which directly critique their own institutions? Can REBs anticipate high social value in undergraduate research and review it accordingly? The presentation will include background information about the creative practice exemption in Canada (TCPS2, Article 6.2), existing literature surrounding research conduct in research-creation, and similar cases from practice. Keywords: Creative practice, art, research-creation, institutional conflict of interest
    Séances de groupe
    Where
    Meeting Room # 9-12

  • 11:00 - 11:45
    How can we ethically ensure that very young, and, elderly demented patients have opportunities to participate in clinical research where they are not capable to provide consent? Good clinical practice, where possible, requires assent from patients incapable of consenting to clinical research, when a licit substitute decision maker (SDM) has consented on behalf of the patient/participant. This can be problematic in several ways. First, there is little consensus as to what ‘assent’ looks like on the ground. Secondly, it may be that some persons are not capable of assent – for example infants and those with profound cognitive losses. Thirdly, there may be a question of ‘tilt’ when the research trial is considered ‘therapeutic’; for example clinical paediatric oncology trials and drug studies in dementia. This session will review the current literature and controversies on Consent and Assent where participants are incapable of consenting on their own behalf. Particular attention is paid to the ethical tensions generated when the patient/participant is to be ‘treated’ on a clinical trial and the problem of Therapeutic Misconception. The break out portion of the session will look at two different types of cases: paediatric oncology cases where a child is not capable to consent but expresses dissent about participation, and, geriatric dementia trials of novel agents where an adult is not capable to consent but resists participation. At the completion of the session, attendees should have a richer understanding of Consent, Assent, Therapeutic trials and Therapeutic misconception. They should also understand how to these manage concerns in research review where assent may not be possible, and finally, the role of stopping rules where participants dissent. Keywords: consent, assent, therapeutic misconception, vulnerable populations
    Séances de groupe
    Where
    Meeting Room # 1

  • 11:00 - 11:45
    The Tri-Council Policy Statement (TCPS) first identified the unique nature of research involving Indigenous communities in 1998. Twenty years later, despite ever-increasing amounts of information (including TCPS2 Chapter 9 Research Involving First Nations, Inuit and Métis Peoples of Canada, CIHR Guidelines for Health Research Involving Indigenous Peoples, and substantial developments in Indigenous community ethics), there are few shared, concrete supports available to REBs such as common tools, training, or other resources. Many REBs continue to struggle with interpreting and implementing the principles outlined in Chapter 9. Some REBs now have local supports within their institutions or research community. For example, the Centre for Addiction and Mental Health (CAMH) REB has benefited from the knowledge of the CAMH Aboriginal Engagement and Outreach unit, and Queen’s University has recently appointed a Director of Indigenous Initiatives. These are two of numerous examples across Canada. Some REBs have established successful approaches based on their own experiences and relationships. In her 2018 research with REBs and research ethics policy experts across the country, Julie Bull has identified and compiled extensive information relating to existing challenges and complexities as well as a series of wise and emerging practices that are already underway. A key topic that was expressed by REBs themselves is the necessity of a national network or hub where REB members and administrators can connect with each other to share developments, advancements, missteps, and effective practices. This will considerably alleviate the current policy-to-practice gap that REBs have identified regarding research with First Nations, Inuit, and Métis. This session will identify and leverage existing resource, capacity and interest within the REB community. Participants will co-create a strategy to enhance concrete supports for REBs, and correspondingly the research community, for research involving Indigenous communities. This is the next step of a grass-roots initiative to turn individual knowledge into shared action. Keywords: Indigenous communities, action, support
    Séances de groupe
    Where
    Meeting Room # 2

  • 11:00 - 11:45
    The presenters recently conducted a SSHRC-funded Knowledge Synthesis project to assess the state of knowledge on the role of institutional Research Ethics Boards in advising both Indigenous and non-Indigenous academic researchers as they walk together with Indigenous individuals and communities, particularly given differences in language and understandings about the concepts of research, ethics, and relationships. This presentation will provide an overview of the completed project, describe how the research paradigm is shifting, and outline some of the ways that REBs can support these changes. Keywords: Indigenous research, ethics policy, OCAP, partnerships
    Séances de groupe
    Where
    Meeting Room # 3

  • 11:00 - 11:45
    It is quite common for professors and instructors in Canada to use tours of prisons or jails for research purposes. Perhaps even more common is use of tours of prisons or jails for pedagogical purposes. Indeed, many professors and instructors teaching in criminology or sociology departments across Canada use some sort of prison or jail tour with a class of theirs on an annual basis. However, little attention has been paid to the ethical issues raised in using prison and jail tours for research or teaching purposes in Canada. How often do professors and instructors obtain ethics approval for such activities? To what extent do they or their students contemplate ethical problems and dilemmas with such tourism? In what ways do these tours advance further marginalization and violence against criminalized, imprisoned persons? In this presentation we contend that there are multiple ethical issues with research and pedagogical tours of prisons and jails that need to be thought about and addressed. We suggest a need for such practices to be scrutinized and interrogated. Keywords: Prisoners, prisons, jails, power, standpoint
    Séances de groupe
    Where
    Meeting Room # 4-8

  • 13:00 - 14:15
    Conferenciers principaux

  • 14:45 - 15:30
    The prominent work of scholars like Charles Ess, Elizabeth Buchanan, Annette Markham, and Michael Zimmer have informed guidelines and policies on digital ethics and Internet research globally since the 1990’s. Digital ethics evolves alongside the evolution of technologies themselves, and with the rise of camera-enabled cellphones and social media platforms that focus on vernacular images (e.g. Instagram™ and Snapchat™), researchers and research ethics boards (REBs/IRBs) increasingly seek guidelines and best practices for research using digital images of bodies shared on social media directly, as data, or indirectly, as prompts. This research project presents the findings of in-depth interviews with 16 researchers who have received institutional ethics approval to study images of bodies shared on social media platforms. The interviews explored the researchers’: a) processes of selecting their methodologies, b) experiences getting ethics approval from institutional review boards, and c) personal research ethics that emerged working with images of bodies from their respective populations of study. The findings indicate that researchers and review boards generally lack resources to handle the ethical quandaries of this sort of research. Researchers often adopt a feminist materialist ethics of care, which includes consideration of the human and non-human forces at play in digital visual research. Researchers all practiced some degree of contextual integrity when using online data. The findings also indicate that scholars practice a series of creatively maverick strategies to protect their participants including: on-going consent, “ethics-on-the-go”, and ethical fabrication like conscious omission. Keywords: Digital ethics, social media, qualitative methods, feminist new materialism, posthumanism
    Séances de groupe
    Where
    Meeting Room # 4-8

  • 14:45 - 15:30
    In Ontario, there is no minimum age for consenting to health care. As mandated by the Ontario Health Care Consent Act, a minor, regardless of age, should be assessed by a regulated health care professional for capacity to consent. Capacity is defined by the Act as the ability to understand the information required to make a decision. It is not age-based. Given that there is no formal legislation or guidance for consenting for research purposes, the HCCA is used as a reference for consent for research participation in children. Consenting participants for research studies is a challenge that is unique to the paediatric population, where capacity is assigned an age, regardless of developmental theories that support the ability of a child to make their own decisions and determine what is right for them. The Research Ethics Board is responsible for ensuring that participants, regardless of age, are given the opportunity to be able to self-determine whether they wish to be part of a research study or not. Through assessment of capacity, the study team should be able to assess whether or not a child can consent for him/herself and when assent is applicable. The session will go through the philosophical foundations and developmental theories which provide the basis for using capacity assessment rather than age as a determining factor for child consent and assent. Cases will be provided to illustrate these as well as provide opportunities for discussion. Keywords: Capacity assessment, consent, children, assent
    Séances de groupe
    Where
    Meeting Room # 3

  • 14:45 - 15:30
    The OCAP® principles—the Ownership, Control, Access and Possession of First Nations information resources by First Nations—were developed by the National Steering Committee of the First Nations and Inuit Regional Longitudinal Health Survey, the precursor to the First Nations Information Governance Centre (FNIGC), in 1998. While OCAP® has important practical roots in the area of health and other quantitative data, the principles of Ownership, Control, Access and Possession of First Nations information resources by First Nations apply to all areas of knowledge. For twenty years OCAP® has evolved into an important tool for First Nations—and impacted other Indigenous communities, researchers and allies—in a wide range of research, data management and governance fields. For many reasons, however, OCAP® has also been widely misunderstood and misapplied. While perhaps wellintentioned, many academic researchers have assumed that OCAP® simply means “good ethics” with Indigenous communities generally and have avoided the complexities of what fully-realized OCAP® means to research with First Nations as self-determining nations. This workshop will focus on a core concern: research relationships with First Nations that, while they may satisfy minimum ethical standards, also fail to recognize and ultimately empower First Nations self-determination and ownership of research, data, and other information resources. Senior staff at FNIGC will outline the organization’s agenda of data sovereignty for First Nations and facilitate discussion on the different ways university REB’s are in relationship to this goal. Keywords: Indigenous research ethics
    Séances de groupe
    Where
    Meeting Room # 2

  • 14:45 - 15:30
    Session Objective: Foster discussion, debate and creation of proposed action plans for VREB Case #5 Session Description: This session will provide attendees with an ability to participate in a live discussion and debate regarding a past VREB case. Both the case and case debrief generated by the CAREB-ACCER VREB Advisory will be leveraged to facilitate discussion and debate around the ethical issues presented by this case. Attendees will be encouraged to openly discuss and debate identified issues and work together using solution focused strategies and tools to come up with proposed action plans for the case under discussion. NOTE: This session will be run and facilitated in both French and English. Keywords: Discussion, Research Ethics, Case study
    Séances de groupe
    Where
    Meeting Room # 9-12

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