Author: Eva Pastor
Date: 02-07-11 14:58
Source: Burnaby.Now
URL: http://www.burnabynow.com/health/Passive+consent+triggers+complaint/4228341/story.html
Date published: February 5th 2011
I just saw that there is current discussion on "passive consent", so this article seemed very timely:
'Passive consent' triggers complaint
Burnaby parent says survey is 'unethical'
By Jennifer Moreau, Burnaby Now February 5, 2011
A parents' group lead by a Burnaby woman is filing an ethics complaint over a survey on kindergarten kids.
Local resident Helen Ward is the president of Kids First Parent Association of Canada. On Jan. 21, Ward made a complaint to UBC's behavioural research ethics board about a letter sent home to parents regarding the Early Development Instrument, a survey on kindergarten kids.
"It's breaking standard procedures for privacy protection and parental consent," Ward said.
The letter informs parents about the survey and mentions that data collected can be linked to education and health information. The letter also states that participation is voluntary, and that parents can contact their children's teachers if they don't want them to participate.
Ward has issues with the use of passive consent, meaning if parents say nothing, their kids will be included in the survey, rather than signing a consent form expressly stating they want their kids involved. Ward is also complaining about what she calls a lack of information on what the data gets linked to.
"They don't say what they are linking it to," Ward said. "It violates parents' rights to informed consent."
The survey is done by kindergarten teachers and asks questions on physical health and well-being, social knowledge and competence, emotional health and maturity, language and cognitive development, general knowledge and communication skills, and "special concerns," such as behavioural problems, disabilities and medical issues.
The survey results are collected by the Human Early Learning Partnership, a government-funded research consortium of universities, based at UBC.
The survey measures the state of early childhood development and helps determine if kindergarten kids are "vulnerable" or healthy and ready to start school.
The information goes into a secure, electronic databank. While the information is anonymous and never made public, HELP uses Personal Education Numbers of the kids for data linkage purposes.
Information from the kindergarten survey can be connected to medical and mental health records, vital statistics and perinatal records by other researchers, and it's these details Ward wants parents to know about.
"It's when I read the list of records they may link to - that's when I was blown away," Ward said.
The B.C. Civil Liberties Association couldn't comment specifically on Ward's complaint, but the group's privacy expert and policy director Micheal Vonn had more broad-based concerns.
"We have a provincial government that is highly committed and has dedicated tremendous amount of money towards data linkages," she said, citing examples like centralizing electronic health records and the integrated case management database, where the provincial government aims to share information across the social services sector.
"We've got a government that is committed to centralizing information from a vast number of ministries, and what this allows you to do in terms of creating dossiers on citizens is just unprecedented," she said. "That is a privacy nightmare."
Vonn said privacy has been protected by having information in different places.
"The minute you start trying to put them together, you create a great danger of prejudice occurring to people based on things that are not relevant to the service provision that they need."
According to Vonn, in the UK, their databases on children will be used to try and figure out future criminality.
"What we do know is it takes an astonishingly little amount of information to be able to flag people," she said.
No one from UBC's ethics board or HELP was available for comment. But, in the letter sent to parents, HELP stated that there are privacy professionals involved at all stages of collecting and storing data and that their policies and practices meet standards set by the Freedom of Information and Protection of Privacy Act.
For more on this story, see Jennifer Moreau's blog, Community Conversations, at www.burnabynow.com. Click on the Opinion tab and follow the link under Blogs.v
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