Research ethics and protecting your research participants

Jonathan Dorey and Robert Douglas Ferguson

Description

Unlike research with historical records, research with human participants requires heightened scrutiny from the researcher. The well-being of your survey participants will impact the quality and validity of your data. User studies in archives now employ a wide array of methodologies, from interviews and surveys to empirical testing and transaction log analysis. To best protect yourself and your research participants, universities provide the services of ethics review boards (ERB) or institutional review boards (IRB).

Depending on the institution, students conducting research might have to receive training as a condition for collecting data. Grants may also have ethics training as a requirement. Since 2016, the Canadian Tri-Council now mandates ethical training for anyone applying, renewing or obtaining a research grant and conducting research with humans. The goal of this workshop is not to replace existing training sessions, but rather to explore practical considerations related to ethics to better prepare oneself when applying for ethics review, as it applies to archival and data research.

The first half of the workshop will cover the following points:

  • When to apply for ethics and how to obtain, if applicable, an exemption.
  • If I’m not poking people or injecting them with stuff, why do I need ethical approval?
  • Differences between confidentiality and anonymity.
  • Ethics, pilot studies, and pre-tests.
  • Participants’ right to privacy during tests, interviews, focus groups, etc.
  • Data storage considerations, including storage on servers in foreign jurisdictions.
  • What information to collect (or not to collect).
  • Working with at-risk groups.
  • Coordinating with multiple institutions, including different types of institutions and institutions in different countries.
  • In the second half of the workshop, we will discuss practical considerations of participants’ ethics application and experiences. Depending on the desire of participants, this can take the form of a Q&A session, small groups discussions or a speed dating session. The organizers will seek feedback from the groups and speed dating session and summarize the information shared for all workshop participants.

    Anticipated outcomes:

    • An understanding of the ethics review process in academic contexts.
    • An understanding of the concepts of privacy, confidentiality, and anonymity.
    • An understanding of the potential implications of data storage choices on the privacy of participants.
    • A list of resources for avoiding unintended harms and resolving ethical considerations when working with vulnerable groups.

    Suggested preparation: ethics workshop, if available at your institution

    Length: 90 minutes

    Maximum number of participants: 10-12
     

    Bio

    Jonathan Dorey is a Ph.D. candidate at the McGill University School of Information Studies in Montréal, Canada. His doctoral research focuses on the needs and expectations of history undergraduates with regards to the types of information found on university archives websites. He is interested in the intersection between language and information, the use and reuse of archival records, information behaviour and information literacy.

    Robert Douglas Ferguson, PhD Candidate, McGill School of Information Studies – I am a doctoral candidate at the McGill School of Information Studies in Montréal, Québec, Canada. My Ph.D research explores personal information management (PIM) and personal archiving. I am interested in the relationship between records management and financial behaviours among young adults. My current research aims to improve the recordkeeping capacities of financial tools and services for young adults. My doctoral research is supervised by Prof. Karyn Moffatt Ph.D at the McGill School of Information Studies. My doctoral research is funded by the Social Science and Humanities Research Council of Canada (SSHRC).

    I hold Masters and Bachelors of Arts degrees in Social Anthropology from York University in Toronto, Ontario, Canada. My MA research explored member attitudes towards online research ethics and the data-mining of personal health information on the patient social networking website PatientsLikeMe.com. My masters research was supervised by Prof. Naomi Adelson Ph.D (York University). As an anthropologist by training, I am interested in individual and group identity construction through documentation and information-related practices.

    I am part of the Accessible Computing Technologies Research Group (ACT) at McGill University. Our current project explores information behaviours and needs of family, friends, and caregivers of loved-ones in hospice and palliative care. Our aim is to develop technologies enhance telepresence, communication, and social support at the end-of-life.