Open Access Highly Accessed Research article

Consent for use of personal information for health research: Do people with potentially stigmatizing health conditions and the general public differ in their opinions?

Donald J Willison12*, Valerie Steeves3, Cathy Charles14, Lisa Schwartz15, Jennifer Ranford1, Gina Agarwal6, Ji Cheng7 and Lehana Thabane17

Author Affiliations

1 Department of Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario, Canada

2 Surveillance and Epidemiology Division, Ontario Agency for Health Protection and Promotion, Toronto, Ontario, Canada

3 Department of Criminology, University of Ottawa, Ottawa, Ontario, Canada

4 Centre for Health Economics and Policy Analysis, Hamilton, Ontario, Canada

5 Department of Philosophy, McMaster University, Hamilton, Ontario, Canada

6 Department of Family Medicine, McMaster University, Hamilton, Ontario, Canada

7 Biostatistics Unit, St Joseph's Healthcare, Hamilton, Ontario, Canada

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BMC Medical Ethics 2009, 10:10  doi:10.1186/1472-6939-10-10

Published: 24 July 2009

Additional files

Additional file 1:

Box 1 – Description of Research Scenarios. Provides information about the scenarios on which consent choices were made.

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Additional file 2:

Appendix 1. Survey questions that formed the elements for (a) the disclosure concern scale; (b) the medical benefits scale; and (c) the consent choices outcome variable. This document provides the core questions that were used in developing two key predictor variables (a measure of individuals' concern over disclosure of information about their health condition and a measure of individuals' perceptions of the benefits of health care and health research for their health condition) and the key outcome variable (consent choice).

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Additional file 3:

Table 1. Summary of Participant Demographics. This describes basic demographic features of survey participants broken down by survey method and sample source. We divided investigator sample source into those who responded by telephone and internet to determine whether demographic characteristics varied more by sample source or self-selected method of completion of the survey.

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Additional file 4:

Table 2. Regression analysis of consent choice predictors. This table presents the results of regression modelling of predictors of consent choice – scenario, survey method, health condition, sex, disclosure concern score, and medical benefits score. The latter two variables were a composite of several questions in the survey. (See Additional File 2.) The comparison of reduced models 1 and 2 allows one to compare the relative amount of explained variance in consent choices that would be attributable to (a) health condition and (b) the combination of perceptions of medical benefit and disclosure concern.

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