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The governance framework for human research in Canada is dangerously flawed and has the potential to lead to harm and suffering.
Canadian researchers and research companies have been allowed to flirt with informed consent; choose research ethics boards with less restrictive oversight; and violate the rights, safety, and welfare of Canadians — including those in situations of vulnerability — under the indifferent eye of a federal government unwilling to fix the system.
In Ethics on Trial, Janice E. Parente — who has led the fight for oversight and accountability of human research in Canada for three decades — shows readers the devastating consequences of the current flawed approach. She proposes a simple solution that embraces a good and ethical system of governance — a system that Canadians should insist on and Canada’s lawmakers and research funders should wholeheartedly adopt.
Ethics on Trial is a story that needed to be told. For more than a quarter-century, efforts to strengthen the protection of human research participants in Canada have been repeatedly stymied — leaving a flawed system in place. It’s a regretful and shameful reality.
In the current unethical culture of the Trumpian times we are living in, Parente's book is timely, as it champions the importance of ethics to ensure safety, transparency and accountability in our Canadian human and health research practices.
Ethics on Trial is not an academic treatise; it is an unapologetic j’accuse targeting a regulatory state that seems disinterested in fully regulating the protection of research participants. What makes this book compelling is that the author was herself the head of a Canadian CRO. This gave her tremendous insight into the limitations of the governance protocol for research ethics ... This is a useful and accessible work for those interested in establishing a formal protocol for the governance of research subjects.
— Katherine Fierlbeck
- Foreword
- Introduction
- Chapter 1: A Suspicious Death
- Chapter 2: “Where Did You Get That Canoe?”
- Chapter 3: Ethics for Sale
- Chapter 4: “What’s a Few Grand to Protect Your Reputation?”
- Chapter 5: The Consequences of No Consequences
- Chapter 6: Gaps in Oversight
- Chapter 7: The Origins of Research Participant Protection
- Chapter 8: “Change Your Brain Waves; Change Your Life!”
- Chapter 9: Good and Ethical Governance, Part I
- Chapter 10: Good and Ethical Governance, Part II
- Chapter 11: Unsavoury Headwinds
- Conclusion
- Acknowledgements
- Notes
- Index