How is the Community Involved with the Ethics of Health Research? Elaine C. Wychreschuk Atlantic Representative, Canadian Arthritis Network Consumer Advisory Council, and Member of the Human Research Ethics Board, Newfoundland and Labrador. Aim. Results.
Elaine C. Wychreschuk
Atlantic Representative, Canadian Arthritis Network Consumer Advisory Council, and
Member of the Human Research Ethics Board, Newfoundland and Labrador
The community member is an equal member of the HREB, undertaking the same training, orientation, and following the same policies and principles as all other members. See further details below.
This poster will provide information about how community members are involved in the oversight of health research provided by the Health Research Ethics Authority (Authority) in Newfoundland and Labrador.
Newfoundland has a unique genetic status as it is one of the few sites world-wide with a founder population – which facilitates genetic research and discovery greatly. In the mid-1990’s patients who had participated in a genetics study discovered no researchers from Newfoundland and Labrador had been involved and the researchers had left nothing – no records, no contact numbers, no clinical follow-up and no feedback to participants. There had been no adherence to issues of consent, privacy and confidentiality. Subsequently, the Government of NL took steps to ensure regulation of all health research conducted in the province.
“The points of view shared by our community members -- as non-scientists, non-health care workers, non-university researchers -- are key to the successful review of clinical research.”
Fern Brunger, PhD, Associate Professor of Health Care Ethics, Memorial University
The Community Member of the HREB plays a valuable role, representing the public’s perspective on the team reviewing research proposals involving human subjects.
Thank you to Dr. Fern Brunger, Dawn Richards and Katy Miller for poster formatting help, and the Canadian Arthritis Network.