A research project involving two CHEPA members has shown that regardless of their health conditions, people want control over how their personal information is used for health research.
Cathy Charles and Lisa Schwartz were co-investigators on the project that compared the attitudes and expectations regarding privacy and the use of personal information for health research among people with selected stigmatizing conditions and with the general public.
The results, published online in BMC Medical Ethics, found that the purpose of the research and the type of information to be collected were more important in determining consent than the health conditions of participants. In particular, participants were less likely to share personal health information when the research was for profit. People were also more willing to link their health information with biological samples than with information about their income, occupation or education.
The team of researchers led by former CHEPA associate member Don Willison surveyed 1,137 people in the Hamilton area and across Canada who either had potentially stigmatizing conditions (HIV, alcoholism, chronic depression or lung cancer) or lower-stigma conditions (hypertension, breast cancer or diabetes), as well as a reference group of healthy people. Subjects were presented with a series of research situations and asked to indicate how much control they would want over the use of their personal information in each case. The choices were regressed onto demographics, health condition, and attitude measures of privacy, disclosure concern, and the benefits of health research.
“We found that people are happy to let their information be used for research, but they still want to maintain control,” said Willison, a part-time associate professor of Clinical Epidemiology and Biostatistics. “So the challenge is finding a balance between the two.”
The researchers concluded that individuals should be offered some choice in use of their information for different types of health research, even if limited to selectively opting-out. However, many questions remain, including how best to capture the opinions of those who are more privacy sensitive.
The research was funded by the Canadian Institutes of Health Research.
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