Designing and Informing Consent to Research

As research ethics standards and practices evolve at research institutions, the voices and interests of participants, families and communities become more audible.

  • “Even though we talk about ‘informed consent’, you can never fully predict what will happen in your research, and what will happen in your research, and what the consequences will be, until it is underway or completed. How are you going to make consent an ongoing process?” write the contributors to Research 101: A Manifesto for Ethical Research in the Downtown Eastside.

This new manifesto, and the handy pocket-sized, “Empowering Informed Consent” , were launched and celebrated by the contributors and organizational partners last week at SFU Woodwards. At the launch longstanding members of the Downtown Eastside described the negative impact of research that reinforces stigma and trauma, while they indicated the value of their own active involvement in this project and other research that produces accessible and responsive results.

Meanwhile, a noon-hour panel “Research Conversations: Designing Consent” drew on recent design projects at Emily Carr University to reflect on and consider options in the “informed consent” phase of research involving children, elders with limited capacity to participate, and communities for whom a legalistic consent document would be a barrier to participation. For panelist Jean Ruiz, Senior Researcher Ethics Analyst, UBC, the assent process in projects that involve children is the most important area for research ethics boards to consider. Areas that demand consideration include:

  • Are there provisions for the on-going assent of the young participants to be monitored?
  • What are the provisions for the benefits of the research activities to be shared with all of the children who encounter them, even if the consent form didn’t make it home to their parents for a signature and then back to the school?

Panelists Caylee Raber, Nadia Beyzaei, and Zach Camozzi, all with Emily Carr University’s Health Design Lab, offered examples of modified approaches to consent and assent that have uniquely resulted from their expertise in both design research, and design thinking. This combination of experience and skill demonstrates the possibilities for enhancing the consent and assent processes through the communications design of the forms, and through use of interactivity (fill-in, folded and cut-away pages of a children’s zine instead of a standard, typed assent page, for instance).

This event coincided with the release of new resources for Emily Carr University researchers and students from the ECU-REB: an informed consent checklist and revised informed consent templates, all found here.

The Research + Industry Office and the Emily Carr University Research Ethics Board thank all of the panelists, including Dr. Cameron Cartiere for moderating the discussion, and the audience of Designing Research!

Thank you also to photo student, Carolina de la Cajiga, for documenting this event.

 

 

Moving and Managing Research Data

As researchers prepare to move to the Great Northern Way campus in July, this is a great time to review processes for managing secure storage of research data and confidential documents. Researchers are encouraged to use this opportunity to ensure that all confidential research materials are carefully stored.

If you are a researcher who is planning to move research materials to the new campus, you may be asking —

What are “Confidential Research Materials”?

Confidential research materials may include contact information about research participants and partners or identifiable information within data sets. This might include photos, video or audio recordings of participants or their property (including their artwork or creative contributions to the research). It may also include hard data such as process books, printed photos or participants’ creative work on paper.

Although policies on safeguarding confidential research materials are in development, standards exist in practice and policies. For example, the Emily Carr University Research Ethics Board (ECU-REB) approves the digital storage of confidential materials on encrypted hard drives that are stored on the premises of the university. If hard data needs to be retained, it should be stored in locked cabinets or drawers  in a locked office or studio.

It is advisable to scan all confidential documents (including signed consent forms) and to store them on encrypted and backed up hard drives on university premises.

Remember – It is the ethical and legal responsibility of researchers and the university to safeguard “from unauthorized access, use, disclosure, modification, loss or theft”, any identifiable information that is collected and retained through research activities.  See, Confidentiality, Glossary, TCPS2, 2014.

What is the Process for Moving Confidential Research Materials?

To move confidential items to the new campus, contact Facilities to arrange for plastic totes and labels to be supplied. See, Packing Confidential Files.

What is Research Data?

Research data is the information that is collected by the researchers to answer or inform the research inquiry. Regardless if it contains confidential information or not, researchers are expected to preserve and make available research data in public funded research for a “reasonable period” following the completion of the research (Research Data Archiving Policy, SSHRC, 2016)*

At Emily Carr University, it is expected that a set of all original research data, whether confidential or not, be retained by the principal investigator for a period of five years from the first date of publication or presentation (ECU 5.1.1 Responsible Conduct of Research Integrity + Scholarship Procedures).  If the research data includes confidential information concerning participants who were part of the research, there must be provisions about the location of the data and the security safeguards in the research ethics file.

*Note that the Tri-Agencies are currently developing more extensive data management policies which will involve more specific procedures for sharing of public data sets.

What is Research Data Management?

Research Data Management involves processes and tools that researchers use to create and save the data they generate over the course of their research. Data may be in various forms including text, transcripts, recordings and numeric data.

New! – The Emily Carr University Library has developed an informative Guide to Data Management Resources for Researchers.

This valuable resource includes useful information on how to manage filing , storage, and maintenance. It aims to keep researchers up to date with changes in data management standards that are anticipated in coming years.

How Can I learn More about Research Data Management at Emily Carr?

Watch for upcoming workshops and presentations on this topic hosted by the Emily Carr Library, Emily Carr University Research Ethics Board office, and the Research Industry Office in the 2017/18 academic year.

What Confidential Data is Currently Being Managed by the ECU-REB Office?

The ECU-REB retains digital copies of all applications for research ethics approval for a period of five years, unless other arrangements have been made with the researchers. If applicants include signed consent forms or original data with completion reports to the ECU-REB at the end of the research, these items are scanned and become a part of the ECU-REB file. Researchers named on these files can request access at any time. Original paper documents are not retained (ECU-REB SOP 104 “ECU-REB Office & File Storage”). ECU-REB files are maintained in a restricted access folder on the Pontus deptshare drive.

WORKSHOP ON SUPPORTING RISK: RESEARCH ETHICS IN DIALOGUE

The Exploding Archive_Mimi Gellman

Hosted by Dr. Glen Lowry, Chair of the ECU-REB, August 26, 2015

The dialogue on supporting risk in research featured presentations from Emily Carr’s Director of Research, Dr. Maria Lantin, and Mimi Gellman, Associate Professor at Emily Carr’s Faculty of Culture and Community, and Ph.D. candidate at Queen’s University, in Cultural Studies.

Dr. Lowry outlined the context and purpose of the workshop— highlighting that its general focus on risk—aimed to provide opportunity for dialogue around two broad ideas: risk and the role of the research ethics board; and advocacy in research.

  1. Risk and REBs
    How can researchers ensure that research participants are equitably, and in an informed manner, involved in the creation of new knowledge, while recognizing the different types of risk participants are expected to withstand: economic, social, psychological, emotional and physical? How can REBs address expectations regarding participants’ contributions to research work?
  2. Advocacy
    Importance of a greater understanding of how ECU-REB seek to work with the community, and to support Art and Design research by recognizing the complex social relations involved in meaningful work, such as advocacy, social location, mediation and support.

Risk and REBs
The workshop focus on supporting risk recognizes that there is no meaningful research in art or design without some sort of risk. Rather than perceiving the REB as a policing body, responsible mainly for protecting the interests of the university, (i.e., managing legal exposure), the situation is, in practice, considerably more nuanced and multifaceted than this. Whilst the ECU-REB is responsible for protecting the Faculty (researchers) and the University (management), the Board does this by attempting to ensure that ethical research standards are understood and upheld in Emily Carr supported projects. To put it simply, the ECU-REB is an arms-length, quasi-autonomous body that is mandated to upholding professional standards with regard to participant engagement and involvement.

To this end, the ECU-REB seeks to identify and recognize the risks (both expected and unexpected) that participants may face as part of their involvement in the research venture. As REBs begin to find ways of coming to terms with the fluid nature of risks, and to understand how these move across the social networks underpinning many research projects, risk takes on increased importance. How do we support participants? How do we support researchers and students who agree to take on the burden of risk involved in a given project? For example, when we engage with healthcare settings, or research involving trauma, or when we seek personal information that might be used against a participant in some other social context, the researcher takes on a burden of responsibility. That responsibility often takes a toll on the researcher, and the REB also considers these implications.

The Board is charged with weighing identified risks against articulated benefits. This type of risk-benefit analysis requires careful consideration of the researchers’ goals, their expectations and training, as well as the capacity of the university to offer appropriate support and mediation. It is also contingent on a clear awareness of research contexts.

Advocacy:
It is important to recognize the relationship between researchers and participants and in particular to consider how the researcher’s social location impacts research design. When it comes to thinking about how research involves vulnerable populations, or individuals who may be putting themselves or their families or communities in harm’s way, Research Ethics looks to the researchers’ recognition of the potential pitfalls in relation to their experience. What is their practical knowledge; their plan for gaining access to support structures that may be required? The ECU-REB is charged with thinking and responding on behalf of participants.

For this reason, coming to terms with the research context is vitally important. One set of research methods or goals might be appropriate in one social context, but might not make sense in other contexts. It is the social context and the identification of participants in their context, which are crucial to what is discussed at the ECU-REB.

Thus, REBs are increasingly interested in considering the relationship between researcher and participants and resisting an idealized set of differences, which tend to position the researcher outside or at a distance from participants. While this is crucial to conventional academic research and to scientific and social scientific understandings of methodology, there is a growing body of knowledge that challenges the supposed neutrality or scientific objectivity of the researcher. In Canada, the need to recognize social groups alongside the autonomy of individuals is of vital importance, and thus respecting concerns about the relationship between a researcher and her participants is important. I would go further and say that for artists, designers, and media makers, blurring the boundaries between the academic researcher and communities is often a strength of the work. Understanding and supporting advocacy is a key issue in such work.

These issues are exactly what the presentations from Mimi Gellman and Dr. Maria Lantin will help us to consider.


WHEN YOU DON’T KNOW WHAT YOU DON’T KNOW/ MITIGATING RISK IN RESEARCH WITH ABORIGINAL PEOPLES

Mimi Gellman, Associate Professor, Faculty of Culture and Community, Emily Carr University of Art + Design; Ph.D. candidate at Queen’s University, in Cultural Studies.

Over the last number of years there has been a growing interest by faculty, students and researchers at Emily Carr on the subject of Indigenous research protocols and methodologies. One can find guidelines for research in Chapter 9, Research Involving the First Nations, Inuit and Metis peoples of Canada, within TCPS2 (the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans). These guidelines though fairly comprehensive, delineate basic principles for research with Aboriginal participants. However, given the diversity of Nation specific ontologies and epistemologies, these guidelines are often not culturally nuanced enough.

Working and conducting research with Aboriginal research participants requires a deep understanding of Aboriginal protocols, specifically the need to develop a pre-research relationship with the individuals and/or communities built on the attributes of respect, trust, responsibility and reciprocity. Each community/band or Nation has their culturally predicated protocols (ways of doing things) and if successful relationships are to be established, the researcher needs to identify these protocols and adhere to them.

Aboriginal peoples have been researched to death. Historically, bad research practices in the past have made many Aboriginal individuals and communities reluctant to participate in the present. Given the long colonial history of misunderstandings between Indigenous Nations and settlers, Aboriginal individuals and communities are often reticent to sign letters of agreement and understanding because of the history of broken agreements and the understandable fear of signing their rights away. Add to this an unscrupulous history of research on Aboriginal peoples as subjects not participants with little to no relationship building preceding the research, scant accountability to the individuals and communities in regards to harm and risk, the sharing of personal data with other bodies and institutions and no reciprocity (no giving back to the communities). I refer to this as a kind of research as “hit and run.”

There are ways however, to conduct ethical research with Aboriginal peoples and I have outlined a brief series of points below to assist in the formation of an ethical practice.

Make yourself conversant with Chapter 9 of TCPS 2

  • Consider the context of your research and what kind of relationship you would like to foster with your research participants
  • Learn as much as possible about the Nation-specific protocols of respect, customs and codes of conduct
  • Establish a relationship of trust and respect with your Aboriginal participants BEFORE you begin the research
  • Clearly identify your positionality as a researcher: this will help you clarify the power relations that may exist between you and your participants and help to alert you to potential risk and risk-management
  • Questions of risk in Aboriginal communities are complex requiring a deep level of consideration. They may involve dialogue with the research participants and communities before the ethics application is submitted for review
  • Clearly outline the mutual benefits of your research project and how you intend to disseminate the results
  • Understand that there may be many different stakeholders within a community and that no individual speaks or represents the voice of all
  • Recognize that although Chapter 9 of TCSP2 refers to research with humans, within Aboriginal populations this may also refer to the other-than-human or all-our- relations, “kinship networks and responsibilities that include multi-generational obligations to ancestors and future generations.
  • Ethical obligations often extend to respectful relations with plant, animal and marine life,”(TCSP2) as well as the air, the water, the earth and the stars.

In the end, what you are trying to do is conduct yourself “in a good way” with the highest degree of honor and respect. Understand that Indigenous protocols across Nations are not homogeneous, that there is no monolithic approach but rather that these protocols are complex, diverse and Nation-specific but also up for individual interpretation and agency. In the end these “protocols” or “the way we do things” all adhere to a fundamental principle and that is, cultivating respectful relations.


ETHICS AND NON-HUMAN ANIMALS IN ART AND DESIGN

Dr. Maria Lantin, Director of Research, Emily Carr University of Art + Design

While the Research Ethics Board has been concerned with human participants in research activities, it is important to consider how we might relate to non-human animals in our work. This issue has come to the forefront recently with artworks that involved non-human animals, raising ethical questions around the treatment of the animals and the relationship between the animals and the work.

At ACAD in 2013, a student slaughtered a chicken in the college cafeteria in a performance piece targeting the killing of chickens in Asia following an outbreak of avian flu. This prompted outcry from the community and eventually the wider public. The college dismissed (and later reinstated) the Faculty member responsible for advising the student, triggering broad discussions across art and design institutions around freedom of speech and the need for policies to regulate the involvement of sentient beings in artworks. Last year, a situation where a student at Emily Carr included a flock of pigeons in an installation piece further highlighted the need for policy in our own institution. A working group has been formed by the Emily Carr University senate, to look at these questions, and draft appropriate policy to guide our activities in this area. The working group will seek the input of the community and strive to create a document that is culturally sensitive and respectful to non-human animals while supporting those who wish to engage with non-human animals in their practice.

Emily Carr University is seeking a code of practice within the art and design context that supplements existing laws already protecting non-human animals from cruelty and mistreatment. A code of practice is necessary because both federal and provincial laws provide only general guidelines for the treatment of non-human animals, deferring specific guidelines to widely accepted norms of treatment of non-human animals within different realms. For example, the treatment of farm animals is considered differently than that of domestic cats. Indeed this concept of relative harm, however problematic, is also embedded in the tri-council policy statement (TCPS) through their definition of minimal risk, which refers to risk “no greater than what the participant would normally encounter in everyday life.” It is important to note that in this context the risk is always modulated by the benefit to the participant and society at large.

In drafting a code of practice for the involvement of non-human animals in art and design, we can look to the core principles of the TCPS as a starting point. First the principle of “Respect for Persons” could be extended to non-human animals, who are not yet persons under the law, by considering their sentience, needs, and life experience. As with human participants this respect extends to biological materials that come from a participant such as DNA, hair, or skin. Central to respecting a participant is the concept of ongoing and informed consent. This is more difficult with non-humans but regular communication with and observation of the non-human participants can give a good indication of their willingness to participate. The second core principle, “Concern for Welfare”, is key to minimizing risk. The Canadian Federation of Humane Societies speaks of the five freedoms for non-human animals:

  • Freedom from hunger and thirst
  • Freedom from discomfort
  • Freedom from pain, injury, or disease
  • Freedom from fear of distress
  • Freedom to express normal behaviour

These five freedoms can be a starting point when considering the welfare of non-human participants.

These observations have just touched on the many complex issues around the involvement of non-human animals in art and design.  The Senate working group is looking forward to involving the Emily Carr community in this important addition to art and research policy and the work of the Research Ethics Board.

‘Supporting Arts-Based Research and Creative Practice: Ethics, Risk and Methodological Innovation’

‘Supporting Arts-Based Research and Creative Practice: Ethics, Risk and Methodological Innovation’

Keynote Presentation by Emily Carr University Research Ethics Board Members to: Canadian Association of Research Ethics Boards (CAREB)

May 1st 2015, Vancouver BC

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Susan Cox, Assistant Professor and Michael Smith Foundation for Health Research Scholar at The W. Maurice Young Centre for Applied Ethics at UBC and Glen Lowry, Associate Professor, Faculty of Culture and Community at the Emily Carr University of Art and Design

Digital storytelling, found poetry, and collaborative mural making are but a few of the arts-based approaches currently employed by researchers. At the same time, creative practitioners from a variety of disciplines—theatre, architecture, creative writing, music, dance, industrial design, visual arts, or new media—are taking up practice-based research and inquiry as defining elements of professional development and training. Unpacking the troubling intersection of these different disciplinary approaches, this plenary dialogue considered key ethical questions arising from methodological innovations in arts-based research and creative practice. When is REB review necessary? When is it not?  What can artists teach the research ethics community?

Workshop on Ethics and Practice: A Conversation on Creative Practice Research

Workshop on Ethics and Practice: A Conversation on Creative Practice Research

Hosted by Dr. Glen Lowry, Chair of the ECU-REB, April 14th 2015

The conversation featured presentations from Emily Carr’s two new Canada Research Chairs, Amber Frid-Jimenez and Garnet Hertz. They spoke about practice-based research, the ethics of participant engagement and presented case studies from their studio practices.