Alternatives to project-specific consent for access to personal information for health research: what is the opinion of the Canadian public?
OBJECTIVE
This study sought to determine public opinion on alternatives to project-specific consent for use of their personal information for health research.


METHODS
The authors conducted a fixed-response random-digit dialed telephone survey of 1,230 adults across Canada.


METHODS
We measured attitudes toward privacy and health research; trust in different institutions to keep information confidential; and consent choice for research use of one's own health information involving medical record review, automated abstraction of information from the electronic medical record, 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% to 89%). Trust was highest for data institutes, university researchers, hospitals, and disease foundations (78% to 80%). Four percent of respondents thought information from their paper medical record should not be used at all for research, 32% thought 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 electronic medical record. 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 that they are up-to-date.
Willison
Donald J
DJ
Centre for Evaluation of Medicines, St. Joseph's Healthcare, 105 Main Street East, P1, Hamilton, Ontario, Canada. willison@mcmaster.ca
Schwartz
Lisa
L
Abelson
Julia
J
Charles
Cathy
C
Swinton
Marilyn
M
Northrup
David
D
Thabane
Lehana
L
D022126:Access to Information; D001294:Attitude to Health; D035843:Biomedical Research; D002170:Canada; D003219:Confidentiality; D003430:Cross-Sectional Studies; D019538:Health Care Surveys; D006801:Humans; D008499:Medical Records; D016347:Medical Records Systems, Computerized; D011639:Public Opinion; D035502:Trust
J Med Ethics. 2004 Feb;30(1):104-9
14872086
Health Law Rev. 2005;13(2-3):107-13
16459423
BMC Med Ethics. 2006 May 23;7:E6
16716233
J Law Med Ethics. 2003 Fall;31(3):429-33
14626550
Hosp Q. 2002 Summer;5(4):40-5, 2
12357571
JAMA. 2005 Sep 21;294(11):1380-4
16174697
BMJ. 2003 Feb 15;326(7385):373
12586673
N Engl J Med. 2004 Apr 1;350(14):1414-21
15070791
BMJ. 2000 Oct 28;321(7268):1031-2
11053151
Ann Intern Med. 2006 May 2;144(9):685-8
16670138
BMC Med Ethics. 2003 Jan 03;4:E1
12513704
BMC Med Inform Decis Mak. 2001;1:1
11331535
BMJ. 2001 Mar 24;322(7288):730
11264225
BMJ. 2006 May 6;332(7549):1068-72
16648132
Int J Med Inform. 2006 Jul;75(7):530-41
16198142
Soc Sci Med. 2007 Jan;64(1):223-35
17045717
J Med Ethics. 2008 Apr;34(4):308-14
18375687
BMJ. 2006 Mar 4;332(7540):544-7
16513715
J Health Serv Res Policy. 2004 Jan;9(1):22-7
15006236
BMJ. 2006 Jul 29;333(7561):255-8
16873867