McMaster University

McMaster University

Faculty of
Health Sciences

Health research participants want control over use of personal information

Published: July 28, 2009
Donald Willison and Lehana Thabane
From left: Donald Willison and Lehana Thabane

People with potentially stigmatizing medical conditions are just as likely as the general public to share their personal information for health research, but both groups want to have control over the use of that information.

A new study by researchers at McMaster University and St. Joseph’s Healthcare Hamilton, and published online in the BMC Medical Ethics journal, 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.

"We found that people are happy to let their information be used for research, but they still want to maintain control," said Donald Willison, a part-time associate professor of Clinical Epidemiology and Biostatistics (CE&B) in the Michael G. DeGroote School of Medicine and a senior scientist with the Ontario Agency for Health Protection and Promotion. "So the challenge is finding a balance between the two."

Willison led a team of researchers who 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.

They presented the subjects with a series of research situations and asked them to indicate how much control they would want over the use of their personal information in each case. In the second phase of the study, focus groups were held with some of the respondents where they were asked to explain their choices.

"Across scenarios, consent choice profiles were very similar for all health conditions," said Lehana Thabane, the statistician for the team, the head of biostatistics at St. Joseph’s Healthcare Hamilton and an associate professor of CE&B at McMaster. "They were also very similar to the profile of the reference group. It may be that, across health conditions, those who were more privacy-sensitive were less inclined to participate in the study, or it may just be that, where people believe that their information will be put to constructive use, people are equally willing to allow their information to be used, regardless of their health condition."

The researchers concluded that individuals should be offered some choice in use of their information for different types of health research.  

"In some cases, like population health research, that may be limited to selectively opting out of research projects," Willison said. "In other cases, like linkage of biological samples with one’s health information, the process would likely continue to require an opting in, perhaps through a broad consent for a range of uses. 

"Just what choices would be offered would have to be determined through further engagement with the public and other stakeholders.  Many questions remain, including how best to capture the opinions of those who are more privacy sensitive".

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