(bold and italics are mine)
An organization called Kids First Canada has been raising awareness of the violation of children and parent privacy rights. Information is collected and linked, from preconception to adulthood, on your children and family (in fact, it appears that the information will be collected from preconception to death). Twenty-four pages of information, on each child entering school, has been collected by the Ministry of Education using a personal education number (PEN). This information was linked to HELP (Human Early Learning Partnership). HELP is a government funded research consortium of universities. According to HELP’s, and associates, websites, it links the child’s information to their family data such as medical, birth, death, hospital, perinatal, mental health, census, pharmaceutical, school achievement, daycare, children in province’s care, stress, injury and Workers compensation board. This list is expected to increase; for example, HELP wants access to our personal income tax data, patterns of employment, time use, etc. Note that this is not information that is shared that can never be tracked back to you; it can be tracked back to you.
I understand that this is part of the Integrated Management System (see prior blog). This means that there will be thousands of access points to this information.
Until 2010 this information was collected and linked without parents consent. In 2010 this was changed from no consent to passive consent, in other words you have to sign a paper that says you don’t want you child’s information collected/shared? What if the paper gets lost, or you are busy and forget, or don’t read very well, or don’t understand what you read, etc. The schools say they will explain it to parents but I suspect they will not explain all the negatives to collecting/sharing your child’s information (as much a time as knowledge issue). If your child’s personal information ends up in the database all HELP has to say is that “they didn’t receive a signed paper”. It would be hard to prove them wrong. On the on the hand, if they must have a signed paper before collecting/sharing the information then they would have to have the paper on file to prove they received it.
Kids First Canada are asking that written parental consent be required and all information collected without parents permission be destroyed.
– information is being collected without the consent of parents
– information used for purposes not identified
– “HELP has stated in media and elsewhere that names and addresses are not used. However, given that HELP obtains Personal Identification Numbers, medical numbers and postal codes, etc. names and addresses would not be needed to individually identify a person or a family.” (1)
– “Judging from the types of data being collected -i.e. perinatal records, hospital records, census, etc. – parents’ and mothers’ personal records are also linked.” (1)
– “with increased use of electronic testing in school, children’s personal beliefs, plans, opinions and experiences expressed in writing could potentially be linked.” (1)
– Will this pigeon-hole the kids, i.e. are they compliant, do they fit certain peoples expectations, are they “different”, etc.?
– Commercialization – HELP and its group has funding from organizations like the Canadian Institutes for Health Research whose mission is to “work with all partners in a concerted effort to move research from an academic setting to the marketplace”. Also from the CIHR website “CIHR is committed to facilitating the commercialization of health research in Canada in support of its overall mandate.”
– “The public has not consented to this collection of data or its use”.(1)
– Cost – we are paying a lot of money for these people to take our information and use it as they choose, sharing with those they choose, without our knowledge or consent
– The “rules” can change tomorrow without our knowledge, much less our consent.
– Security – The government has shown repeatedly that it cannot, and will not, protect the information in its care.
Just think when your children/grandchildren, nieces/nephews grow up, all their personal information will be available at the press of a button by probably just about anyone (banks, insurance companies, employers, future spouses/friends, universities, and so on). Did your children misbehave in school, did they get along with other kids, were they slow starters in school, did they have any medical issues, what is their family background, were there family problems, etc.
As Kids First Canada say “ Our children are not resources to be mined through schools at huge public expense while many parents struggle to pay for basics”. And neither are we adults.
It is not a question of whether all this information, linked to each person, will be “accessed” but how fast. We were told our medical information was confidential, to be shared only with those directly involved in our medical care, only to find out that it is shared with doctors, hospitals, clinics, pharmacies, their suppliers, researchers (and apparently lots of other people/organizations – who go to the “business office” and plug their computers into the database); and that information is now going to be linked to government ministries and I am sure the list will expand; all without our consent (and in most cases – our knowledge). The government just took the information. And once it’s “out there”, it’s “out there”. You don’t get it back. The people who have this information will know more about you, and your family, than you know about yourself and your family; and they will use it for their own gain.
Some other databases they could link with include the police database. Apparently they’ve been keeping information even on law-abiding citizens (2). And, of course, the Smart Meter. Just think of the information those graphs would provide – the time you get up, the time you go to bed, whether you work out of home, if you go out in the evening and which nights, if you go on holidays and when, have family/friends over for the holidays, and much more.
And, as has been shown, once the government has your information, they can change the rules (laws) at anytime, without consulting us – unless we make that illegal. If you want our personal information, get our written permission.
We have a right to privacy. We have a right to control our own personal information. The politicians, and their friends, are repeatedly violating that right.
Here is some additional information from HELP, Population Data BC’s and Edudata Canada’s websites:
HELP’S website states “HELP’s leading edge research has resulted in British Columbia being the first and only jurisdiction in the world to monitor the development of young children as they enter kindergarten at a population level.” – versus person-specific?????
“Researcher access to data will be approved by the Data Steward for a holding using a harmonized Research Agreement process through Population Data BC. Named programmers have access to Identifiers to perform linkages on intake only. Content Data are stored on a separate server, and are accessed by named programmers to perform Research Extracts as defined through a Research Agreement. In no cases are Content Data and Identifiers brought back together. This separation of information safeguards the privacy of personal information. “ (HELP)
If you have all the personal information of an individual, I doubt it would take much to “connect the dots”. A person lives in a particular postal code, has x number family members, is x age, etc. And, as Kids First say: “this is a false assurance of privacy as names are not needed when personal numbers are used.” Plus, there will be numerous “links” to all these other databases, and the more links, the greater the likelihood that this “separate server” with all your information,with your identifier number, will be accessed. How hard would it be to track, or intercept, a link? We also know that government people have accessed individual’s information in violation of the law when it suited their agenda (The Veteran’s affair for example) The Data Stewards are the government ministries and public agencies (but they don’t seem to list them all), nor are the agreements shown.
As noted above in one sentence they say that “separation of data safeguards …your privacy” then later admits that your data isn’t safe by saying “Risk of exposure is significantly lower than that of most Data Providers as we separate Identifiers from Content Data”. So, they do admit that there is a risk of exposure, they just don’t say how high a risk (and I’d want proof, not just words). By the way, HELP is looking for a part-time privacy officer whose duties will involve “addressing breach response management” – application deadline – April 19, 2011. Nothing like being prepared with the right excuse to explain why your very personal, confidential, information was shared with the world.
“HELP partner, Population Data BC, offers the research community access to one of the world’s largest collections of health care, health services and population health care data; “Population Data BC offers qualified researchers access to a rich source of linkable, person specific, but de-identified data on British Columbia’s four million residents, in many cases from 1985 forward. Current data holdings include health care and health service records, population and demographic data and occupational data. Population Data BC continues to expand its data holdings and is working to bring in datasets from education, early childhood development, work place, and the environment”. Who are these researchers? Are they people from supplier/pharmaceutical/other businesses (many foreign companies subject to the Patriot Act) and how is the information being used?
“The Canadian Education Data Network (Edudata Canada) is developing user-friendly educational research databases from British Columbia and elsewhere. The mission is to create an infrastructure that makes K-12 education data available to researchers, policy makers and other qualified individuals and organizations, subject to privacy and confidentiality guidelines”. Now they say that in addition to sharing with researchers, they will also share with government & “others”. Also, when they say education data it sounds like they are sharing school grades when, in fact, it includes much more.
How can we monitor Population Data BC’s use of the data to ensure it is being used as contractually agreed upon?
All usage of the data will be regulated by an Information Sharing Agreement with the data provider which will outline how the provider can monitor the use of the data on an individual basis. This will include regular reports and is outlined further in Population Data BC’s Audit Policy. Again this tells us absolutely nothing since we won’t know what is in the contract, how they are being monitored or if Population Data BC is upfront about any violations. And no mention of independent audits. In fact, their audit policy is not on their website. And, as we know from the Auditor General’s audit of the hospital database, the data provider wasn’t monitoring the use/disposal of the data they had shared, so why would we believe that hundreds or thousands of other data providers will monitor the data they share..
CYDTRU – Child and Youth Developmental Trajectories Research Unit – “an emerging research unit within HELP is developing a program of research that will track children’s development over time” “…utilizing linkable health, child development (school readiness), education, community resource and socio-demographic data. These databases will enable research projects that can trace individual developmental trajectories (anonymized) from conception to high school leaving, across various facets of the health, social and educational systems for all children in B.C.” “CYDTRU researchers are working in collaboration to identify and create additional data sets that will enhance the current stock of trajectories data… – …to develop and expand the number of population-based person-specific databases and to conduct research projects.” In other words, they are planning to collect even more information on us. As long as there are links back to the person it is not anonymous.
“The BCLHD (BC Linked Health Database) infrastructure brings together person-specific, population-based, longitudinal* data across a broad range of health and societal factors from the late 1980s onwards. The BCLD is one of only a small number of resources in the world where longitudinal research on an entire population can be conducted”. I guess other countries respect their peoples privacy, their peoples rights. Also note that they say entire population, not just children.
For more information you can contact www.kidsfirstcanada.org, www.earlylearning.ubc.ca, http://www.popdata.bc.ca/; www.edudata,edu.ubc.ca, www.soeh.ubc.ca
* a longitudinal study is a correlational research study that involves repeated observations of the same items over long periods of time – often decades. Longitudinal studies track the same people. – Wikipedia
(1) Kids First Canada
(2) Office of the Information & Privacy Commissioner for BC (OIPC), March 25, 2011, Commissioner Shares BC Civil Liberties Concerns Over Information