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First published August 21, 2007 as JAMIA PrePrint; doi:10.1197/jamia.M2457
Journal of the American Medical Informatics Association 2007;14(6):706-712
© 2007 American Medical Informatics Association

A more recent version of this article appeared on November 1, 2007
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Submitted on March 29, 2007
Accepted on August 1, 2007

Alternatives to project-specific consent for access to personal information for health research: What is the opinion of the Canadian public?

Donald J. Willison ScD1*, Lisa Schwartz PhD2, Julia Abelson PhD3, Cathy Charles PhD3, Marilyn Swinton BSc4, David Northrup MA5, and Lehana Thabane PhD1

Affiliation of the authors: 1 Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada; Centre for Evaluation of Medicines, St. Joseph's Healthcare, Hamilton, Ontario, Canada ; 2 Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada; Department of Philosophy, McMaster University, Hamilton, Ontario, Canada ; 3 Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada; Centre for Health Economics and Policy Analysis, Hamilton, Ontario, Canada ; 4 School of Nursing, McMaster University, Hamilton, Ontario, Canada; 5 Institute for Social Research, York University, Toronto, Ontario, Canada

* To whom correspondence should be addressed.

Objective Our objective was to determine public opinion on alternatives to project-specific consent for use of their personal information for health research.

Design We conducted a fixed-response random-digit dialled telephone survey of 1230 adults across Canada.

Measurements We measured: 1) attitudes toward privacy and health research, 2) trust in different insitutions to keep information confidential, and 3) consent choice for research use of one's own health information involving: medical record review; automated abstraction of information from the electronic medical record (EMR); and linking education or income with health data.

Results Support was strong for both health research and privacy protection. Studying communicable diseases and quality of health care had greatest support (85-89%). Trust was highest for: data institutes; university researchers; hospitals; and disease foundations (78-80%). Four percent of respondents felt information from their paper medical record should not be used at all for research; 32% felt permission should be obtained for each use; 29% supported broad consent, 24% supported notification and opt out; and 11% felt no need for notification or consent. Opinions were more polarized for automated abstraction of data from the EMR. Respondents were more willing to link education with health data than income.

Conclusions Most of the public supported alternatives to study-specific consent but few supported use without any notification or consent. Consent choices for research use of one's health information should be documented in the medical record. The challenge remains how best to elicit those choices and ensure they are up-to-date.




This article has been cited by other articles:


Home page
 J. Med. EthicsHome page
D J Willison, C Emerson, K V Szala-Meneok, E Gibson, L Schwartz, K M Weisbaum, F Fournier, K Brazil, and M D Coughlin
Access to medical records for research purposes: varying perceptions across research ethics boards
J. Med. Ethics, April 1, 2008; 34(4): 308 - 314.
[Abstract] [Full Text] [PDF]


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