The Secretariat on Responsible Conduct of Research: Ethics Guardians or Keystone Cops?
- 1 School of Criminology, Simon Fraser University, Burnaby, Canada
Abstract
Human research ethics policies invariably hold confidentiality to be a core ethics principle. However, in North America over the past 50 years, numerous third parties—including police, grand juries, Congressional committees, coroners and corporations—have used various lawful mechanisms, such as subpoenas or search warrants, to attempt to gain access to confidential research information. The failure to legislate confidentiality protection for research participants in Canada may reflect the fact that there have been relatively few lawful threats to research confidentiality. However, the legal landscape has changed significantly over the past seven years; from 2012 to 2018, there were six new third-party party attempts to access confidential research information in criminal, civil and coroners’ courts. One of these challenges involved assisted suicide researcher Russel Ogden. In May 2014, the BC Coroner served Ogden, then a Kwantlen faculty member, a summons to interview him under oath concerning the death in 2012 of one of his research participants. Because the Coroner’s examination could potentially compromise Ogden’s promise of research confidentiality, he requested that Kwantlen provide legal support. When Kwantlen declined to provide that support, a third party made a formal complaint to the Secretariat on Responsible Conduct in Research concerning Kwantlen’s conduct. The ensuing article describes the Secretariat response to that complaint. The article suggests that, rather than leaving the defence of research confidentiality in the courtroom to individual research institutions, the Granting Councils should establish a fund to which universities contribute to defend research confidentiality against any lawful challenge.
- Blomley, N., & Davis, S. (1998). Russel Ogden Decision Review. http://www.sfu.ca/~palys/ogden.htm
- CIHR (Canadian Institutes of Health Research), NSERC (Natural Sciences and Engineering Research Council), & SSHRC (Social Sciences and Humanities Research Council) (2014). Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Ottawa: Government of Canada.
- Cribb, R. (2012) Death’s Midwife Helps Terminally Ill Canadians End Their Lives. Toronto Star. http://www.thestar.com/news/gta/2012/10/21/deaths_midwife_helps_terminally_ill_canadians_end_their_lives.html
- Lowman, J., & Palys, T. S. (2001). Ethics and Institutional Conflict of Interest: The Research Confidentiality Controversy at Simon Fraser University. Sociological Practice, 2, 245-264. https://doi.org/10.1023/A:1026589415488
- Lowman, J., & Palys, T. S. (2014). The Betrayal of Research Confidentiality in British Sociology. Research Ethics, 10, 97-118. https://doi.org/10.1177/1747016113481145
- Ogden, R. (1994). Euthanasia and Assisted Suicide in Persons Who Have Acquired Immunodeficiency Syndrome (AIDS) or Human Immunodeficiency Virus (HIV). MA Thesis, Simon Fraser University.
- Ogden, R. (2014). Observing a Self-Chosen Death. In S. Fabian, M. Felices-Luna, & J. Kilty (Eds.), Demarginalizing Voices: Commitment, Emotion, and Action in Qualitative Research (pp. 15-37). UBC Press.
- Palys T. S., & Lowman, J. (2014). Research Confidentiality: What Happens When Ethics and Law Collide. Lorimer (Published in the Canadian Association of University Teachers Academic Freedom Series).
- Palys, T. S., & Ivers, A. (2018). Hope for the Best, Plan for the Worst: Understanding Administrative Inertia in Developing Confidentiality Protection Policies. Journal of Empirical Research on Human Research Ethics, 13, 438-451. https://doi.org/10.1177/1556264618789246
- Palys, T. S., & Lowman, J. (2010). Going Boldly Where No One Has Gone Before: How Confidentiality Risk Aversion Is Killing Research on Sensitive Topics. Journal of Academic Ethics, 8, 265-284. https://doi.org/10.1007/s10805-010-9113-0
- Palys, T. S., & Lowman, J. (2019). Eight Challenges to Research Confidentiality in Canada: Invoking and Protecting Research-Participant Privilege. In C. Hunt (Ed.), The Law of Privilege in Canada. Thomson Reuters.
- Palys, T. S., Turk, J. L., & Lowman, J. (2018). Statute-Based Protections for Research Participant Confidentiality: Implications of the US Experience for Canada. Canadian Journal of Law and Society, 33, 1-20. https://doi.org/10.1017/cls.2018.24