SUGGESTED READINGS ON THE TOPIC OF EXPERIENCES OF CLINICAL RESEARCH PARTICIPANTS AS SUGGESTED BY Linda Furlini, PhD and Nick Bogdanos, BSc RELATED TO THEIR ST. MARY’S RESEARCH CENTRE’S SEMINAR PRESENTED ON MAY 22, 2014
REFERENCES FOR FURTHER READING
Hepworth, J., Robertson, A., Jhunjhunwala, A., Jarvis, G., & McVittie, C. (2011). Cancer-related psychosocial research: what are the perspectives of cancer care centre users on participation? Support Care Cancer, 19, 1029–1035 Reid, R., Susic, D., Pathirana, S., Tracy, S. & Welsh, A. (2011). The ethics of obtaining consent in labour for research. Australian and New Zealand Journal of Obstetrics and Gynaecology, 51, 485–492
Cox, M. & McDonald, M. (2013) Ethics is for human subjects too: Participant perspectives on responsibility in health research. Social Science & Medicine, 98, 224-231 McDonald, M., Cox, S & Townsend, A. (in press). Towards Human Research Protection That Is Evidence-Based and Participant-Centered in I.G. Cohen & Fernandez Lynch, H. (Eds.) The Future of Human Subject Research Regulation, MIT Press. Townsend, A. & Cox, S. (2013). Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada. BMC Medical Ethics, See: http://www.biomedcentral.com/1472-6939/14/40 Deschênes, M. (2012). Qui surveille la recherche et veille à la sécurité des participants? In M. Carrier & D. Laudy (Eds.), Questions d'éthique - La recherche médicale de la naissance à l'âge adulte. Montréal: Éditions du CHU SainteJustine. Foglia, Salas, & Diekema. (2009). A Quality Improvement Approach to Improving Informed Consent Practices in pediatric Research. The Journal of Clinical Ethics, 20(4), 343-352. Kimmelman, J., Lemmens, T., & Kim, S. Y. W. (2012). Analysis of Consent Validity for Invasive, Nondiagnostic Research Procedures. IRB Ethics and Human Research, 34(5), 1-7. Salas, H. S., Aziz, Z., Villareale, N., & Diekema, D. S. (2008). The Research and Family liaison: Enhancing Informed Consent. IRB Ethics and Human Research, 30(4), 18.
The Poisson Affair
Deschamps, Pierre, Vinay, Patrick & Cruess, Sylvia (1995). Rapport sur l'évaluation des mécanismes de contrôle en matière de recherche Clinique présenté au Ministre de la Santé et des Services sociaux du Québec. http://collections.banq.qc.ca/ark:/52327/bs64968 Keränen, Lisa. (2010). Scientific Characters: Rhetoric, Politics, and Trust in Breast Cancer Research, University of Alabama Press. New England Journal of Medicine. (1994, May 19). Correspondence: Fraud in breast cancer trials. (A series of letters to the editor submitted by Drs. Fisher, Poisson, Bivens & Macfarlane, Huet, and Richer p. 1458-1462) http://www.nejm.org/doi/full/10.1056/NEJM199405193302015 Shafer, Arthur. (1994). The moral autonomy and the ethical pathology of the randomizied clinical trial in P.P. DeDeyn (Ed.) The Ethics of Human and Animal Experimentation (pp. 269-276). John Libbey & Co. Ltd. Weijer, Charles. (1995). The breast cancer research scandal: Addressing the issues. Canadian Medical Association Journal, 152, 1195-1197.
