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 Willison,Lehana Thabane,Valerie Steeves,Cathy Charles,Jennifer Ranford,Lisa Schwartz,Gina Agarwal,Ji Cheng

doi:10.1186/1472-6939-10-10

Abstract

BackgroundStigma 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.MethodsWe 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.ResultsWe 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.ConclusionsThe 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.

Highlights

Stigma refers to a distinguishing personal trait that is perceived as or is physically, socially, or psychologically disadvantageous
Individuals with a potentially stigmatizing health condition may be more inclined than members of the public without such conditions to experience concerns over disclosure of their personal health information out of concern that this could result in discrimination against them
They are under-represented in surveys targeted to the general public and, to the extent that some health conditions are stigmatizing, the perspective of individuals with these conditions may be discounted by the general public

Summary

Introduction

Stigma refers to a distinguishing personal trait that is perceived as or is physically, socially, or psychologically disadvantageous. The term "stigma" generally refers to a distinguishing personal trait that is perceived as or is physically, socially, or psychologically disadvantageous. People who are unwell have the most at stake, both because they stand to benefit from research into their health condition and because a breach of privacy may potentially expose them to discrimination in obtaining loans, mortgages, insurance, or employment. They are under-represented in surveys targeted to the general public and, to the extent that some health conditions are stigmatizing, the perspective of individuals with these conditions may be discounted by the general public. If we listen only to the voice of the general public without attention to the concerns of this vulnerable minority we run the risk of committing a form of "tyranny of the majority". [11]

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