VANCOUVER – Three groups interested in health privacy have joined forces today to condemn Statistics Canada and the way it is collecting sensitive health information from Canadians for a national survey called the Community Health Survey. The groups are critical of the intrusive nature of the survey and accuse the agency of “misleading practices” and failure to obtain informed consent.
The Canadian Community Health Survey is randomly contacting thousands of Canadians over the next year to solicit information about their personal health history, including questions about their illnesses, smoking, alcohol and drug use, sexual behaviour and mental health, including whether they have suicidal thoughts and tendencies.
The B.C. Civil Liberties Association, the B.C. Freedom of Information and Privacy Association and the B.C. Coalition of People with Disabilities describe the information which is given to survey respondents in order to obtain consent for collecting and sharing their information as “woefully inadequate”—not sufficient to ensure true informed consent. They also say the information provided does not make it clear that Statistics Canada is providing all the information collected to Health Canada and provincial ministries of health in personally-identified format.
“Stats Canada is playing fast and loose with the rules regarding consent to share this incredibly sensitive information,” said Murray Mollard of the BCCLA. “The survey also seeks personal information about other household members without their consent and allows proxy answers to intimate information,” he added.
Mollard said the survey does not adequately identify the purposes for which the information is collected, and does not obtain true informed consent of respondents to link the information with provincial and regional health data.
Gerald Fahey, President of FIPA, said his organization was also concerned about the scope and invasiveness of the 45 to 60-minute interview. “We think this kind of collection and sharing of personal health information is simply inappropriate. There is no information more private, and we think people should retain control of it,” he said.
The concern of Fahey’s group grew when a member of the public complained to the BCCLA that a Stats Can surveyor had falsely informed her that the survey was mandatory. “We suspect this may be the tip of the iceberg,” Fahey stated. “We are interested in hearing from more people who may have complaints, once Canadians know the real facts about this survey.” “This news conference seeks to achieve what Stats Can ought to be doing,” Mollard said. “After the uproar over the HRDC Longitudinal Labour Force File, Canadians now demand that government agencies are completely transparent when they seek to collect and use personal information.”