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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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Citation and License

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

Published: 24 July 2009

Abstract

Background

Stigma refers to a distinguishing personal trait that is perceived as or actually is physically, socially, or psychologically disadvantageous. Little is known about the opinion of those who have more or less stigmatizing health conditions regarding the need for consent for use of their personal information for health research.

Methods

We surveyed the opinions of people 18 years and older with seven health conditions. Participants were drawn from: physicians' offices and clinics in southern Ontario; and from a cross-Canada marketing panel of individuals with the target health conditions. For each of five research scenarios presented, respondents chose one of five consent choices: (1) no need for me to know; (2) notice with opt-out; (3) broad opt-in; (4) project-specific permission; and (5) this information should not be used. Consent choices were regressed onto: demographics; health condition; and attitude measures of privacy, disclosure concern, and the benefits of health research. We conducted focus groups to discuss possible reasons for observed consent choices.

Results

We observed substantial variation in the control that people wish to have over use of their personal information for research. However, consent choice profiles were similar across health conditions, possibly due to sampling bias. Research involving profit or requiring linkage of health information with income, education, or occupation were associated with more restrictive consent choices. People were more willing to link their health information with biological samples than with information about their income, occupation, or education.

Conclusions

The heterogeneity in consent choices suggests individuals should be offered some choice in use of their information for different types of health research, even if limited to selectively opting-out. Some of the implementation challenges could be designed into the interoperable electronic health record. However, many questions remain, including how best to capture the opinions of those who are more privacy sensitive.