Ethical review upholds the principles of justice, welfare and respect for persons participating in research. As research becomes more complex, ethical considerations and best practices must keep pace.

With that in mind, the 2024 Clinical Research Ethics Symposium brought together more than 100 people from research ethics and clinical research communities across British Columbia and Canada to explore the ethical questions shaping today’s research. From climate resilience to new approaches for consent, the two-day virtual event spotlighted emerging issues and sparked fresh ideas.

The event highlighted the continual need for those in the field to drive positive change through partnership. Participants left feeling empowered to make sure that clinical research stays ethical, inclusive and ready for the future.

“Our discussions over these two days have made one thing clear: ethics is not static,” said Hanna Jones-Eriksson. She is the research ethics manager, Research Ethics BC — now the research ethics team at Clinical Trials British Columbia. “It must evolve to meet the changing needs of society, researchers and participants alike. The information and knowledge we gained from this symposium will guide future discussions and inform ongoing work to strengthen ethical standards in research.”

The symposium was presented through partnership between Research Ethics BC and Clinical Trials British Columbia, both formerly part of Health Research BC, in collaboration with a planning committee. Thank you to the speakers, facilitators, planning committee and participants who made this symposium a success.

The research ethics team at Clinical Trials British Columbia plays a vital role in bringing ethics boards across the province together. Our team offers education, training, and resources to strengthen their capabilities and harmonize reviews.

Watch all presentations from this year’s symposium.

• Addressing ethical considerations in a changing climate
• Navigating the future of clinical trials regulations
• Rethinking consent in critical care
• Unveiling the human side of clinical trials

Facilitator: Karen Medler, research ethics coordinator, Island Health

Speakers:

• Aaron Orkin, associate professor, Department of Family and Community Medicine, and Dalla Lana School of Public Health, University of Toronto
• Carolyn Szostak, associate professor, Psychology, University of British Columbia Okanagan
• Corinne Hohl, MDCM, MHSc, CCFP, FRCPC, professor and head, Department of Emergency Medicine, UBC and academic director, Emergency Care BC, PHSA

The symposium started with a session on the impact of climate change on research. Speakers highlighted how events like heat waves, wildfires and pandemics can influence and impact research.

“The unexpected happens,” stressed Dr. Aaron Orkin. “We are all realizing that major events that we don’t expect are just part of our landscape. Expect it”

The session also focused on the ethical considerations of conducting research in areas affected by wildfires and noted important considerations when research participants are mental health service providers. Speakers emphasized the importance of participant contribution and adaptability throughout a research study. Other lessons from BC’s 2021 heat dome showed how robust existing research networks and quick protocol adaptations allow research teams to investigate emergencies when they arise and capture critical data to inform future responses.

From these unexpected events, the audience gained insights to help them adapt future studies and ensure they have the necessary resources to respond effectively to climate emergencies.

Catch up on the session about climate change’s impacts on research:

Facilitator: Alison Orth, Portfolio Director, Clinical Trials British Columbia

Speaker: Jean Smart, Regulatory Affairs and Quality Officer, Clinical Trials British Columbia

Staying informed is key to ethical research. Dr. Jean Smart presented a session on how researchers and ethics boards must stay ahead of evolving regulations. She traced the history of ethical standards from the Nuremberg Code to today. Along the way, she highlighted the importance of Good Clinical Practice (GCP) and adapting to international benchmarks. Jean emphasized the vital role of well-trained and knowledgeable research ethics boards in ensuring ethical oversight as the research landscape evolves.

Dive deeper into the evolving regulatory landscape for clinical trials and discover what’s next:

Facilitator: Alison Orth, Portfolio Director, Clinical Trials British Columbia

Speaker: Michel Shamy, MD, MA, FRCPC
Associate Professor, Department of Medicine, University of Ottawa
Attending neurologist, The Ottawa Hospital
Scientist, Ottawa Hospital Research Institute
Scientific Director, Ottawa Stroke Program
Lead, Medical Ethics & Humanities, Faculty of Medicine, University of Ottawa

When seconds matter, the usual rules of consent face tough challenges. In critical care trials like those for acute stroke, patients are often unconscious or too incapacitated to provide consent. Dr. Michel Shamy explored the challenges of navigating these high-pressure situations. He explained how deferral of consent allows life-saving treatments to begin immediately, with formal consent sought later. Michel also introduced the concept of advanced consent, enabling patients at risk of stroke to document their wishes ahead of time. Through patient surveys, he showed strong support for this proactive approach, emphasizing the need for clear communication and respect for autonomy in every step of the process.

Discover strategies for navigating consent in emergency clinical trials:

Facilitator: Sarah Flann, research ethics coordinator, Clinical Research Ethics Board, University of British Columbia

Speakers:

• Ali Hosseini, clinical research coordinator, Fraser Health
• Deborah Parfett, clinical research manager, Island Health
• Dustin Mackay, clinical trials nurse coordinator, BC Cancer Prince George – Centre for the North
• Gayle Carney, clinical nurse educator, Island Health

The second day of the symposium gave participants a rare window into the ethical considerations that arise when an approved ethical protocol is put into practice. A panel of clinical research professionals shared real-world experiences, voicing ethical issues that might not typically make their way into research ethics board meetings.

Speakers emphasized the importance of clear communication, particularly in studies involving people with dementia, where comprehension is critical. Accessibility was another focus, with stories highlighting the struggles of patients in rural or remote areas to access clinical trials. The conversation concluded with a call to action for inclusivity, stressing that trials must accommodate cultural and language differences to truly represent all participants.

“We need to find a way to ensure information is conveyed in ways that inform and benefit the participant, not just us,” said Gayle Carney.

The session shed light on the critical, often unseen work of managing logistics, supporting participants and upholding ethical standards to drive meaningful research.

Hear from clinical trials coordinators on their challenges and insights:

Thank you to the 2024 Clinical Research Ethics Symposium Planning Committee for their efforts in making this symposium a success:

• Dorothy Herbert, Interior Health
• Hanna Jones-Eriksson, research ethics, Clinical Trials British Columbia
• Jessica Chu, research ethics, Clinical Trials British Columbia
• Karen Medler, Island Health
• Pia Ganz, University of British Columbia
• Rachel Chan, research ethics, Clinical Trials British Columbia
• Raman Kaur, Northern Health
• Sara O’Shaughnessy, Fraser Health
• Honourary mention: Clinical Trials British Columbia, Michael Smith Health Research BC