Who'd have thought that data privacy was an issue in the 17th century? "I know where thou dwellest" proclaims the King James Bible. 400 years later, and we know a whole lot more than that. In fact, we've evolved into a Database State. Information on our lives has become freely available in databases built by the Government - data on our homes, health, taxes, our political preferences and our buying habits -all in the name of advancing research and improving our socioeconomic wellbeing.
Many of us make a choice about what information we share, and what we choose to keep to ourselves: so our store loyalty cards give retailers data on our preferred products? It's a trade-off we're willing to make for discount vouchers or a free daily latte. What's concerning, though, is when personal information becomes available on vulnerable members of our societies who are not in a position to make opting in or opting out choices. Data on those members of our societies whom we have a moral and ethical responsibility to protect - the young, the sick -has become a commodity.
A change in legislation late last year gave private companies the opportunity to access such information on our children such as absences, exam results, eligibility for free school meals, exclusions and special educational needs. The information is held in the National Pupil Database, and it is available "for the purpose of promoting the education or well-being of children in England". Apparently there was a public consultation in late 2012. I must have blinked and missed it.
If you are an organisation conducting research or analysis, producing statistics or providing information, advice or guidance, then you can apply for free access to this data. So far, so woolly. Are we talking the British Nutrition Foundation here, or Nike? Will the data be used to draw on trends, to inform and educate our schoolchildren, or will they be sold to? Will it be treated with the maximum sensitivity it deserves, or is there a chance this could fall short due to human error?
The Department of Education assures us that there will be stringent data controls, that those bodies requesting data must meet strict regulations and protect the identity of the individuals, with applicants having to "demonstrate that you comply with all relevant requirements of the Data Protection Act 1998".
They must prove that they, or their organisations:
• are registered with the Information Commissioner's Office to process personal data or fall within an exemption
• have appropriate security arrangements in place to process the data
• intend to use the data only for the specified purpose in your request
• will keep the data only for the specified length of time
• will not share the data without our prior written approval
The guidelines are clear, but it's going to be difficult to police and will rely on the integrity of those firms requesting access.
Education Minister Michael Gove's initial objective behind the opening up of this data was to "maximise the value of this rich dataset". My concern is that once you start talking about children as young as four as a dataset, all best intentions and ethical obligations fly out of the window.
Ownership of and responsibility for the data is an issue. As far as I'm aware there is no Data Controller for the National Pupil Database. We can't expect overstretched teachers or school governors to take ownership, and not enough schools have the IT resource to be able to take on this role. Local authorities could be expected to pick up the mantle, but are further removed from the data.
Another issue with access to the National Pupil Database is the one I referred to earlier on: the lack of choice and education presented to pupils and parents with regard to opting out, if indeed opting out is possible. This, to me, is the problem. We're not being communicated with, nor being given information to help us make informed decisions. Any parent to whom I've spoken about this is horrified, concerned they can't make the choice to opt out - and embarrassed that they just didn't know it was happening.
Care.data is another collation of personal statistics that brings with it concerns about privacy. It's the NHS England initiative which will see data uploaded GP's records to national Health and Social Care Information Centre databases, and it's come under a barrage of criticism. Similar to the National Pupil Database, the information may be available to external bodies, subject to approval. These include medical charities, academia, think tanks and commercial organisations.
The single biggest difference between access to the Care.data database and the National Pupil Database is communication surrounding its collation. Whilst it certainly hasn't been great regarding Care.data so far, at least health practitioners have information on their websites and in surgeries about opting out (although presumably if you're using your GP's services, you're not feeling great and the last thing on your mind is how your data is used). All households should have received information about the project. GPs can register as data controllers, and take ownership and responsibility for the information they have. And at least there are some ethical objectives which might have a positive effect on our populations: preventing or managing illness, monitoring the risk of disease spread, helping us organise and plan our nation's healthcare provision.
It's not enough to send households an impersonal free leaflet that is lost on the doormat under takeaway menus and double glazing mailshots (care.data). And it's not enough to launch an under-the-radar public consultation (National Pupil Database). The Government is supposed to be striving to achieve transparency. The organisations behind these projects should have been open and transparent from the outset, about the objectives, the likely outcomes, and the options available to citizens. With the National Pupil Database, pupils, parents, teachers, teaching assistants, governors, parents' associations should be given the ability to make a choice about opting in or opting out. Choice is empowering. Withdrawing it is insulting. And giving external bodies access to our children's personal data is very wrong.