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Consent for use of personal information for health research: do people with potentially stigmatizing health conditions and the general public differ in their opinions?

Willison DJ, Steeves V, Charles C, Schwartz L, Ranford J, Agarwal G, Cheng J, Thabane L - BMC Med Ethics (2009)

Bottom Line: Consent choices were regressed onto: demographics; health condition; and attitude measures of privacy, disclosure concern, and the benefits of health research.Research involving profit or requiring linkage of health information with income, education, or occupation were associated with more restrictive consent choices.However, many questions remain, including how best to capture the opinions of those who are more privacy sensitive.

View Article: PubMed Central - HTML - PubMed

Affiliation: Department of Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario, Canada. willison@mcmaster.ca

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.

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Consent choices across research scenarios – A comparison of the general population with a pooled sample of those with the target health conditions.
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Figure 3: Consent choices across research scenarios – A comparison of the general population with a pooled sample of those with the target health conditions.

Mentions: Across scenarios, consent choice profiles were very similar for all health conditions. They were also very similar to the profile of the reference group. For ease of presentation, we have combined the responses across health conditions in Figure 3 and compared these with the reference group.


Consent for use of personal information for health research: do people with potentially stigmatizing health conditions and the general public differ in their opinions?

Willison DJ, Steeves V, Charles C, Schwartz L, Ranford J, Agarwal G, Cheng J, Thabane L - BMC Med Ethics (2009)

Consent choices across research scenarios – A comparison of the general population with a pooled sample of those with the target health conditions.
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC2724473&req=5

Figure 3: Consent choices across research scenarios – A comparison of the general population with a pooled sample of those with the target health conditions.
Mentions: Across scenarios, consent choice profiles were very similar for all health conditions. They were also very similar to the profile of the reference group. For ease of presentation, we have combined the responses across health conditions in Figure 3 and compared these with the reference group.

Bottom Line: Consent choices were regressed onto: demographics; health condition; and attitude measures of privacy, disclosure concern, and the benefits of health research.Research involving profit or requiring linkage of health information with income, education, or occupation were associated with more restrictive consent choices.However, many questions remain, including how best to capture the opinions of those who are more privacy sensitive.

View Article: PubMed Central - HTML - PubMed

Affiliation: Department of Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario, Canada. willison@mcmaster.ca

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.

Show MeSH
Related in: MedlinePlus