title: Consent for use of personal information for health research: do people with potentially stigmatizing health conditions and the general public differ in their opinions?
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.
authors.affiliation: Department of Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario, Canada. willison@mcmaster.ca
authors.forename: Donald J
authors.initials: DJ
authors.lastname: Willison
authors.forename: Valerie
authors.initials: V
authors.lastname: Steeves
authors.forename: Cathy
authors.initials: C
authors.lastname: Charles
authors.forename: Lisa
authors.initials: L
authors.lastname: Schwartz
authors.forename: Jennifer
authors.initials: J
authors.lastname: Ranford
authors.forename: Gina
authors.initials: G
authors.lastname: Agarwal
authors.forename: Ji
authors.initials: J
authors.lastname: Cheng
authors.forename: Lehana
authors.initials: L
authors.lastname: Thabane
mesh_terms: D000328:Adult; D002170:Canada; D002755:Choice Behavior; D003219:Confidentiality; D004522:Educational Status; D005260:Female; D017144:Focus Groups; D006801:Humans; D007182:Income; D007258:Informed Consent; D008297:Male; D016347:Medical Records Systems, Computerized; D008875:Middle Aged; D015999:Multivariate Analysis; D033262:Narration; D009790:Occupations; D011639:Public Opinion; D011640:Public Policy; D012044:Regression Analysis; D012107:Research Design; D035842:Research Subjects; D015983:Selection Bias; D013240:Stereotyping; D011795:Surveys and Questionnaires; D055815:Young Adult