Medicine and Health Sciences Commons^™

The Return Of Research Results To Participants: Pilot Questionnaire Of Adolescents And Parents Of Children With Cancer, Conrad Fernandez, Darcy Santor, Charles Weijer, Caron Strahlendorf, Albert Moghrabi, Rebecca Pentz, Jun Gao, Eric Kodish

Charles Weijer

PURPOSE: The offer to return research results to participants is increasingly recognized as an ethical obligation, although few researchers routinely return results. We examined the needs and attitudes of parents of children with cancer and of adolescents with cancer to the return of research results.

METHODS: Seven experts in research ethics scored content validity on parent and adolescent questionnaires previously developed through focus group and phone interviews. The questionnaires were revised and provided to 30 parents and 10 adolescents in a tertiary care oncology setting.

RESULTS: The content validity index for individual questions and the overall questionnaires scored as 0.86 …

Monitoring Clinical Research: An Obligation Unfulfilled, Charles Weijer, Stanley Shapiro, Abraham Fuks, Kathleen Glass, Myriam Skrutkowska

Charles Weijer

The revelation that data obtained for the US-based National Surgical Adjuvant Breast and Bowel Project (NSABP) from subjects enrolled at Hôpital Saint-Luc in Montreal was falsified has eroded public trust in research. Institutions can educate researchers and help prevent unethical research practices by establishing procedures to monitor research involving human subjects. Research monitoring encompasses four categories of activity: annual reviews of continuing research, monitoring of informed consent, monitoring of adherence to approved protocols and monitoring of the integrity of data. The authors describe characteristics of research projects that may call for monitoring procedures in each category. The form taken by …