“The consent model is broken” was among its key conclusions.
Similarly, this summer, the Swedish DPA found, in accordance with GDPR, that consent was not a valid legal basis for a school pilot using facial recognition to keep track of students’ attendance given the clear imbalance between the data subject and the controller.
This power imbalance is at the heart of the failure of consent as a lawful basis under Art. 6, for data processing from schools.
Schools, children and their families across England and Wales currently have no mechanisms to understand which companies and third parties will process their personal data in the course of a child’s compulsory education.
Children have rights to privacy and to data protection that are currently disregarded.
Fair processing is a joke.
Unclear boundaries between the processing in-school and by third parties are the norm.
Companies and third parties reach far beyond the boundaries of processor, necessity and proportionality, when they determine the nature of the processing: extensive data analytics, product enhancements and development going beyond necessary for the existing relationship, or product trials.
Data retention rules are as unrespected as the boundaries of lawful processing. and ‘we make the data pseudonymous / anonymous and then archive / process / keep forever’ is common.
Rights are as yet almost completely unheard of for schools to explain, offer and respect, except for Subject Access. Portability for example, a requirement for consent, simply does not exist.
“Children do not lose their human rights by virtue of passing through the school gates. Thus, for example, education must be provided in a way that respects the inherent dignity of the child and enables the child to express his or her views freely in accordance with article 12, para (1), and to participate in school life.”
“the human race is about to enter a totally data mined existence…education happens to be today, the world’s most data mineable industry– by far.”
At the moment, these competing interests and the enormous power imbalance between companies and schools, and schools and families, means children’s rights are last on the list and oft ignored.
In addition, there are serious implications for the State, schools and families due to the routine dependence on key systems at scale:
Infrastructure dependence ie Google Education
Hidden risks [tangible and intangible] of freeware
Data distribution at scale and dependence on third party intermediaries
and not least, the implications for families’ mental health and stress thanks to the shift of the burden of school back office admin from schools, to the family.
It’s not a contract between children and companies either
Contract GDPR Article 6 (b) does not work either, as a basis of processing between the data processing and the data subject, because again, it’s the school that determines the need for and nature of the processing in education, and doesn’t work for children.
Controllers must, inter alia, take into account the impact on data subjects’ rights when identifying the appropriate lawful basis in order to respect the principle of fairness.
They also concluded that, on the capacity of children to enter into contracts, (footnote 10, page 6)
“A contractual term that has not been individually negotiated is unfair under the Unfair Contract Terms Directive “if, contrary to the requirement of good faith, it causes a significant imbalance in the parties’ rights and obligations arising under the contract, to the detriment of the consumer”.
Like the transparency obligation in the GDPR, the Unfair Contract Terms Directive mandates the use of plain, intelligible language.
Processing of personal data that is based on what is deemed to be an unfair term under the Unfair Contract Terms Directive, will generally not be consistent with the requirement under Article5(1)(a) GDPR that processing is lawful and fair.’
In relation to the processing of special categories of personal data, in the guidelines on consent, WP29 has also observed that Article 9(2) does not recognize ‘necessary for the performance of a contract’ as an exception to the general prohibition to process special categories of data.
They too also found:
it is completely inappropriate to use consent when processing children’s data: children aged 13 and older are, under the current legal framework, considered old enough to consent to their data being used, even though many adults struggle to understand what they are consenting to.
Can we fix it?
Consent models fail school children. Contracts can’t be between children and companies. So what do we do instead?
Schools’ statutory tasks rely on having a legal basis under data protection law, the public task lawful basis Article 6(e) under GDPR, which implies accompanying lawful obligations and responsibilities of schools towards children. They cannot rely on (f) legitimate interests. This 6(e) does not extend directly to third parties.
Third parties should operate on the basis of contract with the school, as processors, but nothing more. That means third parties do not become data controllers. Schools stay the data controller.
Where that would differ with current practice, is that most processors today stray beyond necessary tasks and become de facto controllers. Sometimes because of the everyday processing and having too much of a determining role in the definition of purposes or not allowing changes to terms and conditions; using data to develop their own or new products, for extensive data analytics, the location of processing and data transfers, and very often because of excessive retention.
Although the freedom of the mish-mash of procurement models across UK schools on an individual basis, learning grids, MATs, Local Authorities and no-one-size-fits-all model may often be a good thing, the lack of consistency today means your child’s privacy and data protection are in a postcode lottery. Instead we need:
a radical rethink the use of consent models, and home-school agreements to obtain manufactured ‘I agree’ consent.
to radically articulate and regulate what good looks like, for interactions between children and companies facilitated by schools, and
radically redesign a contract model which enables only that processing which is within the limitations of a processors remit and therefore does not need to rely on consent.
It would mean radical changes in retention as well. Processors can only process for only as long as the legal basis extends from the school. That should generally be only the time for which a child is in school, and using that product in the course of their education. And certainly data must not stay with an indefinite number of companies and their partners, once the child has left that class, year, or left school and using the tool. Schools will need to be able to bring in part of the data they outsource to third parties for learning, *if* they need it as evidence or part of the learning record, into the educational record.
Where schools close (or the legal entity shuts down and no one thinks of the school records [yes, it happens], change name, and reopen in the same walls as under academisation) there must be a designated controller communicated before the change occurs.
The school fence is then something that protects the purposes of the child’s data for education, for life, and is the go to for questions. The child has a visible and manageable digital footprint. Industry can be confident that they do indeed have a lawful basis for processing.
Schools need to be within a circle of competence
This would need an independent infrastructure we do not have today, but need to draw on.
communication to families and children of agreed processors on an annual basis,
an opt out mechanism that works,
alternative lesson content on offer to meet a similar level of offering for those who do,
and end-of-school-life data usage reports.
The due diligence in procurement, in data protection impact assessment, and accountability needs to be done up front, removed from the classroom teacher’s responsibility who is in an impossible position having had no basic teacher training in privacy law or data protection rights, and the documents need published in consultation with governors and parents, before beginning processing.
However, it would need to have a baseline of good standards that simply does not exist today.
That would also offer a public safeguard for processing at scale, where a company is not notifying the DPA due to small numbers of children at each school, but where overall group processing of special category (sensitive) data could be for millions of children.
Where some procurement structures might exist today, in left over learning grids, their independence is compromised by corporate partnerships and excessive freedoms.
While pre-approval of apps and platforms can fail where the onus is on the controller to accept a product at a point in time, the power shift would occur where products would not be permitted to continue processing without notifying of significant change in agreed activities, owner, storage of data abroad and so on.
We shift the power balance back to schools, where they can trust a procurement approval route, and children and families can trust schools to only be working with suppliers that are not overstepping the boundaries of lawful processing.
What might school standards look like?
The first principles of necessity, proportionality, data minimisation would need to be demonstrable — just as required under data protection law for many years, and is more explicit under GDPR’s accountability principle. The scope of the school’s authority must be limited to data processing for defined educational purposes under law and only these purposes can be carried over to the processor. It would need legislation and a Code of Practice, and ongoing independent oversight. Violations could mean losing the permission to be a provider in the UK school system. Data processing failures would be referred to the ICO.
Purposes: A duty on the purposes of processing to be for necessary for strictly defined educational purposes.
Service Improvement: Processing personal information collected from children to improve the product would be very narrow and constrained to the existing product and relationship with data subjects — i.e security, not secondary product development.
Deletion: Families and children must still be able to request deletion of personal information collected by vendors which do not form part of the permanent educational record. And a ‘clean slate’ approach for anything beyond the necessary educational record, which would in any event, be school controlled.
Fairness: Whilst at school, the school has responsibility for communication to the child and family how their personal data are processed.
Post-school accountability as the data, resides with the school: On leaving school the default for most companies, should be deletion of all personal data, provided by the data subject, by the school, and inferred from processing. For remaining data, the school should become the data controller and the data transferred to the school. For any remaining company processing, it must be accountable as controller on demand to both the school and the individual, and at minimum communicate data usage on an annual basis to the school.
Ongoing relationships: Loss of communication channels should be assumed to be a withdrawal of relationship and data transferred to the school, if not deleted.
Data reuse and repurposing for marketing explicitly forbidden. Vendors must be prohibited from using information for secondary [onward or indirect] reuse, for example in product or external marketing to pupils or parents.
Families must still be able to object to processing, on an ad hoc basis, but at no detriment to the child, and an alternative method of achieving the same aims must be offered.
Data usage reports would become the norm to close the loop on an annual basis. “Here’s what we said we’d do at the start of the year. Here’s where your data actually went, and why.”
In addition, minimum acceptable ethical standards could be framed around for example, accessibility, and restrictions on in-product advertising.
There must be no alternative back route to just enough processing
What we should not do, is introduce workarounds by the back door.
Schools are not to carry on as they do today, manufacturing ‘consent’ which is in fact unlawful. It’s why Google, despite the objection when I set this out some time ago, is processing unlawfully. They rely on consent that simply cannot and does not exist.
‘There has been a significant expansion of education technology used in classrooms’, the FTC mused before asking whether the Commission should consider a specific exception to parental consent for the use of education technology used in the schools.
In a backwards approach to agency and the development of a rights respecting digital environment for the child, the consultation in effect suggests that we mould our rights mechanisms to fit the needs of business.
That must change. The ecosystem needs a massive shift to acknowledge that if it is to be GDPR compliant, which is a rights respecting regulation, then practice must become rights respecting.
That means meeting children and families reasonable expectations. If I send my daughter to school, and we are required to use a product that processes our personal data, it must be strictly for the *necessary* purposes of the task that the school asks of the company, and the child/ family expects, and not a jot more.
Borrowing on Ben Green’s smart enough city concept, or Rachel Coldicutt’s just enough Internet, UK school edTech suppliers should be doing just enough processing.
How it is done in the U.S. governed by FERPA law is imperfect and still results in too many privacy invasions, but it offers a regional model of expertise for schools to rely on, and strong contractual agreements of what is permitted.
That, we could build on. It could be just enough, to get it right.
We laud people in these companies as co-founders and forward thinkers on new data ethics institutes. They are invited to sit on our national boards, or create new ones.
What does that say about the entire board’s respect for the law which the company breached? It is hard not to see it signal acceptance of the company’s excuses or lack of accountability.
The same companies whose work has breached data protection law, multiple ways, seemingly ‘by accident’ on national data extractions, are those companies that cross the t’s and dot the i’s on even the simplest conference call, and demand everything is said in strictest confidence. Meanwhile their everyday business practices ignore millions of people’s lawful rights to confidentiality.
The extent of commercial companies’ influence on these boards is opaque. To allow this ethics bandwagon to be driven by the corporate giants surely eschews genuine rights-based values, and long-term integrity of the body they appear to serve.
I am told that these global orgs must be in the room and at the table, to use the opportunity to make the world a better place.
These companies already have *all* the opportunity. Not only monopoly positions on their own technology, but the datasets at scale which underpin it, excluding new entrants to the market. Their pick of new hires from universities. The sponsorship of events. The political lobbying. Access to the media. The lawyers. Bottomless pockets to pay for it all. And seats at board tables set up to shape UK policy responses.
It’s a struggle for power, and a stake in our collective future. The status quo is not good enough for many parts of society, and to enable Big Tech or big government to maintain that simply through the latest tools, is a missed chance to reshape for good.
You can see it in many tech boards’ make up, and pervasive white male bias. We hear it echoed in London think tank conferences, even independent tech design agencies, or set out in some Big Tech reports. All seemingly unconnected, but often funded by the same driving sources.
These companies are often those that made it worse to start with, and the very ethics issues the boards have been set up to deal with, are at the core of their business models and of their making.
The deliberate infiltration of influence on online safety policy for children, or global privacy efforts is very real, explicitly set out in the #FacebookEmails, for example.
We will not resolve these fundamental questions, as long as the companies whose business depend on them, steer national policy. The odds will be ever in their favour.
At the same time, some of these individuals are brilliant. In all senses.
So what’s the answer. If they are around the table, what should the UK public expect of their involvement, and ensure in whose best interests it is? How do we achieve authentic accountability?
Whether it be social media, data analytics, or AI in public policy, can companies be safely permitted to be policy shapers if they wear all the hats; product maker, profit taker, *and* process or product auditor?
Creating Authentic Accountability
At minimum we must demand responsibility for their own actions from board members who represent or are funded by companies.
They must deliver on their own product problems first before being allowed to suggest solutions to societal problems.
There should be credible separation between informing policy makers, and shaping policy.
There must be total transparency of funding sources across any public sector boards, of members, and those lobbying them.
Board members must be meaningfully held accountable for continued company transgressions on rights and freedoms, not only harms.
Oversight of board decision making must be decentralised, transparent and available to scrutiny and meaningful challenge.
While these new bodies may propose solutions that include public engagement strategies, transparency, and standards, few propose meaningful oversight. The real test is not what companies say in their ethical frameworks, but in what they continue to do.
If they fail to meet legal or regulatory frameworks, minimum accountability should mean no more access to public data sets and losing positions of policy influence.
Their behaviour needs to go above and beyond meeting the letter of the law, scraping by or working around rights based protections. They need to put people ahead of profit and self interests. That’s what ethics should mean, not be a PR route to avoid regulation.
As long as companies think the consequences of their platforms and actions are tolerable and a minimal disruption to their business model, society will be expected to live with their transgressions, and our most vulnerable will continue to pay the cost.
This is part 2 of thoughts on Policy shapers, product makers, and profit takers — data and AI. Part 1 is here.
The Data Protection Bill about to pass through the House of Commons requires the Information Commissioner to prepare and issue codes of practice — which must be approved by the Secretary of State — before they can become statutory and enforced.
One of those new codes (clause 124) is about age-appropriate data protection design. Any provider of an Information Society Service — as outlined in GDPR Article 8, where a child’s data are collected on the legal basis of consent — must have regard for the code, if they target the site use at a child.
For 13 -18 year olds what changes might mean compared with current practices can be demonstrated by the Minister for Digital, Culture, Media and Sport’s new app, launched today.
This app is designed to be used by children 13+. Regardless that the terms say, [more aligned with US COPPA laws rather than GDPR] the app requires parental approval 13-18, it still needs to work for the child.
Apps could and should be used to open up what politics is about to children. Younger users are more likely to use an app than read a paper for example. But it must not cost them their freedoms. As others have written, this app has privacy flaws by design.
Children merit specific protection with regard to their personal data, as they may be less aware of the risks, consequences and safeguards concerned and their rights in relation to the processing of personal data. (GDPR Recital 38).
The flaw in the intent to protect by age, in the app, GDPR and UK Bill overall, is that understanding needed for consent is not dependent on age, but on capacity. The age-based model to protect the virtual child, is fundamentally flawed. It’s shortsighted, if well intentioned, but bad-by-design and does little to really protect children’s rights.
Future age verification for example; if it is to be helpful, not harm, or a nuisance like a new cookie law, must be “a narrow form of ‘identity assurance’ – where only one attribute (age) need be defined.” It must also respect Recital 57, and not mean a lazy data grab like GiffGaff’s.
On these 5 things this app fails to be age appropriate:
Age appropriate participation, privacy, and consent design.
Excessive personal data collection and permissions. (Article 25)
The purposes of each data collected must be specified, explicit and not further processed for something incompatible with them. (Principle 2).
The Council of Europe 2016-21 Strategy on the Rights of the Child, recognises “provision for children in the digital environment ICT and digital media have added a new dimension to children’s right to education” exposing them to new risk, “privacy and data protection issues” and that “parents and teachers struggle to keep up with technological developments. ” [6. Growing up in a Digital World, Para 21]
Data protection by design really matters to get right for children and young people.
This is a commercially produced app and will only be used on a consent and optional basis.
This app shows how hard it can be for people buying tech from developers to understand and to trust what’s legal and appropriate.
For developers with changing laws and standards they need clarity and support to get it right. For parents and teachers they will need confidence to buy and let children use safe, quality technology.
Without relevant and trustworthy guidance, it’s nigh on impossible.
For any Minister in charge of the data protection rights of children, we need the technology they approve and put out for use by children, to be age-appropriate, and of the highest standards.
This app could and should be changed to meet them.
For children across the UK, more often using apps offers them no choice whether or not to use it. Many are required by schools that can make similar demands for their data and infringe their privacy rights for life. How much harder then, to protect their data security and rights, and keep track of their digital footprint where data goes.
If the Data protection Bill could have an ICO code of practice for children that goes beyond consent based data collection; to put clarity, consistency and confidence at the heart of good edTech for children, parents and schools, it would be warmly welcomed.
Here’s detailed examples what the Minister might change to make his app in line with GDPR, and age-appropriate for younger users.
1. Is the app age appropriate by design?
Unless otherwise specified in the App details on the applicable App Store, to use the App you must be 18 or older (or be 13 or older and have your parent or guardian’s consent).
Children over 13 can use the app, but this app needs parental consent. That’s different from GDPR– consent over and above the new laws as will apply in the UK from May. That age will vary across the EU. Inconsistent age policies are going to be hard to navigate.
What else needs changed?
2. Personal data protection by design and default
Excessive personal data collection cannot be justified through a “consent” process, by agreeing to use the app. There must be data protection by design and default using the available technology. That includes data minimisation, and limited retention. (Article 25)
The apps powers are vast and collect far more personal data than is needed, and if you use it, even getting permission to listen to your mic. That is not data protection by design and default, which must implement data-protection principles, such as data minimisation.
If as has been suggested, in the newest version of android each permission is asked for at the point of use not on first install, that could be a serious challenge for parents who think they have reviewed and approved permissions pre-install (and fails beyond the scope of this app). An app only requires consent to install and can change the permissions behind the scenes at any time. It makes privacy and data protection by design even more important.
Here’s a copy of what the android Google library page says it can do. Once you click into “permissions” and scroll. This is excessive. “Matt Hancock” is designed to prevent your phone from sleeping, read and modify the contents of storage, and access your microphone.
Version 2.27 can access:
approximate location (network-based)
read phone status and identity
Photos / Media / Files
read the contents of your USB storage
modify or delete the contents of your USB storage
read the contents of your USB storage
modify or delete the contents of your USB storage
take pictures and videos
Wi-Fi connection information
view Wi-Fi connections
Device ID & call information
read phone status and identity
manage document storage
receive data from Internet
view network connections
full network access
change your audio settings
prevent device from sleeping
“Matt Hancock” knows where you live
The app makers – and Matt Hancock – should have no necessity to know where your phone is at all times, where it is regularly, or whose other phones you are near, unless you switch it off. That is excessive.
It’s not the same as saying “I’m a constituent”. It’s 24/7 surveillance.
The Ts&Cs say more.
It places the onus on the user to switch off location services — which you may expect for other apps such as your Strava run — rather than the developers take responsibility for your privacy by design. [Click image to see larger] [Full source policy].
[update since writing this post on February 1, the policy has been greatly added to]
It also collects ill-defined “technical information”. How should a 13 year old – or parent for that matter – know what these information are? Those data are the meta-data, the address and sender tags etc.
By using the App, you consent to us collecting and using technical information about your device and related information for the purpose of helping us to improve the App and provide any services to you.
As NSA General Counsel Stewart Baker has said, “metadata absolutely tells you everything about somebody’s life. General Michael Hayden, former director of the NSA and the CIA, has famously said, “We kill people based on metadata.”
If you use this app and “approve” the use, do you really know what the location services are tracking and how that data are used? For a young person, it is impossible to know, or see where their digital footprint has gone, or knowledge about them, have been used.
3. Specified, explicit, and necessary purposes
As a general principle, personal data must be only collected for specified, explicit and legitimate purposes and not further processed in a manner that is incompatible with those purposes. The purposes of these very broad data collection, are not clearly defined. That must be more specifically explained, especially given the data are so broad, and will include sensitive data. (Principle 2).
While the Minister has told the BBC that you maintain complete editorial control, the terms and conditions are quite different.
The app can use user photos, files, your audio and location data, and that once content is shared it is “a perpetual, irrevocable” permission to use and edit, this is not age-appropriate design for children who might accidentally click yes, or not appreciate what that may permit. Or later wish they could get that photo back. But now that photo is on social media potentially worldwide — “Facebook, Twitter, Pinterest, YouTube, Instagram and on the Publisher’s own websites,” and the child’s rights to privacy and consent, are lost forever.
Journalists testing the app point out that even if the user clicks “don’t allow”, when prompted to permit access to the photo library, the user is allowed to post the photo anyway.
What does consent mean if you don’t know what you are consenting to? You’re not. GDPR requires that privacy policies are written in a way that their meaning can be understood by a child user (not only their parent). They need to be jargon-free and meaningful in “clear and plain language that the child can easily understand.” (Recital 58)
5. What would age appropriate permissions for charging and other future changes look like?
It should be clear to users if there may be up front or future costs, and there should be no assumption that agreeing once to pay for an app, means granting permission forever, without affirmative action.
Couching Bait-and-Switch, Hidden Costs
This is one of the flaws that the Matt Hancock app terms and conditions shares with many free education apps used in schools. At first, they’re free. You register, and you don’t even know when your child starts using the app, that it’s a free trial. But after a while, as determined by the developer, the app might not be free any more.
The folly of boiler plate policy, or perhaps simply wanting to keep your options open?
Either way, it’s bad design for children– indeed any user — to agree to something that in fact, is meaningless because it could change at any time, and automatic renewals are convenient but who has not found they paid for an extra month of a newspaper or something else they intended to only use for a limited time? And to avoid any charges, you must cancel before the end of the free trial – but if you don’t know it’s free, that’s hard to do. More so for children.
From time to time we may offer a free trial period when you first register to use the App before you pay for the subscription.[…] To avoid any charges, you must cancel before the end of the free trial.
(And on the “For more details, please see the product details in the App Store before you download the App.” there aren’t any, in case you’re wondering).
What would age appropriate future changes be?
It should be clear to parents that what they consent to on behalf of a child, or if a child consents, at the time of install. What that means must empower them to better digital understanding and to stay in control, not allow the company to change the agreement, without the user’s clear and affirmative action.
One of the biggest flaws for parents in children using apps is that what they think they have reviewed, thought appropriate, and permitted, can change at any time, at the whim of the developer and as often as they like.
Notification “by updating the Effective Date listed above” is not any notification at all. And PS. they changed the policy and backdated it today from February 1, 2018, to July 2017. By 8 months. That’s odd.
The statements in this “changes” contradict one another. It’s a future dated get-out-of-jail-free-card for the developer and a transparency and oversight nightmare for parents. “Your continued use” is not clear, affirmative, and freely given consent, as demanded by GDPR.
Perhaps the kindest thing to say about this policy, and its poor privacy approach to rights and responsibilities, is that maybe the Minister did not read it. Which highlights the basic flaw in privacy policies in the first place. Data usage reports how your personal data have actually been used, versus what was promised, are of much greater value and meaning. That’s what children need in schools.
What would it mean for you to trust an Internet connected product or service and why would you not?
What has damaged consumer trust in products and services and why do sellers care?
What do we want to see different from today, and what is necessary to bring about that change?
These three pairs of questions implicitly underpinned the intense day of #iotmark discussion at the London Zoo last Friday.
The questions went unasked, and could have been voiced before we started, although were probably assumed to be self-evident:
Why do you want one at all [define the problem]?
What needs to change and why [define the future model]?
How do you deliver that and for whom [set out the solution]?
If a group does not agree on the need and drivers for change, there will be no consensus on what that should look like, what the gap is to achieve it, and even less on making it happen.
So who do you want the trustmark to be for, why will anyone want it, and what will need to change to deliver the aims? No one wants a trustmark per se. Perhaps you want what values or promises it embodies to demonstrate what you stand for, promote good practice, and generate consumer trust. To generate trust, you must be seen to be trustworthy. Will the principles deliver on those goals?
The Open IoT Certification Mark Principles, as a rough draft was the outcome of the day, and are available online.
Here’s my reflections, including what was missing on privacy, and the potential for it to be considered in future.
I’ve structured this first, assuming readers attended the event, at ca 1,000 words. Lists and bullet points. The background comes after that, for anyone interested to read a longer piece.
Many thanks upfront, to fellow participants, to the organisers Alexandra D-S and Usman Haque and the colleague who hosted at the London Zoo. And Usman’s Mum. I hope there will be more constructive work to follow, and that there is space for civil society to play a supporting role and critical friend.
The mark didn’t aim to fix the IoT in a day, but deliver something better for product and service users, by those IoT companies and providers who want to sign up. Here is what I took away.
I learned three things
A sense of privacy is not homogenous, even within people who like and care about privacy in theoretical and applied ways. (I very much look forward to reading suggestions promised by fellow participants, even if enforced personal openness and ‘watching the watchers’ may mean ‘privacy is theft‘.)
Awareness of current data protection regulations needs improved in the field. For example, Subject Access Requests already apply to all data controllers, public and private. Few have read the GDPR, or the e-Privacy directive, despite importance for security measures in personal devices, relevant for IoT.
I truly love working on this stuff, with people who care.
And it reaffirmed things I already knew
Change is hard, no matter in what field.
People working together towards a common goal is brilliant.
Group collaboration can create some brilliantly sharp ideas. Group compromise can blunt them.
Some men are particularly bad at talking over each other, never mind over the women in the conversation. Women notice more. (Note to self: When discussion is passionate, it’s hard to hold back in my own enthusiasm and not do the same myself. To fix.)
The IoT context, and risks within it are not homogenous, but brings new risks and adverseries. The risks for manufacturers and consumers and the rest of the public are different, and cannot be easily solved with a one-size-fits-all solution. But we can try.
Concerns I came away with
If the citizen / customer / individual is to benefit from the IoT trustmark, they must be put first, ahead of companies’ wants.
If the IoT group controls both the design, assessment to adherence and the definition of success, how objective will it be?
The group was not sufficiently diverse and as a result, reflects too little on the risks and impact of the lack of diversity in design and effect, and the implications of dataveillance .
Critical minority thoughts although welcomed, were stripped out from crowdsourced first draft principles in compromise.
More future thinking should be built-in to be robust over time.
What was missing
There was too little discussion of privacy in perhaps the most important context of IoT – inter connectivity and new adversaries. It’s not only about *your* thing, but things that it speaks to, interacts with, of friends, passersby, the cityscape , and other individual and state actors interested in offense and defense. While we started to discuss it, we did not have the opportunity to discuss sufficiently at depth to be able to get any thinking into applying solutions in the principles.
One of the greatest risks that users face is the ubiquitous collection and storage of data about users that reveal detailed, inter-connected patterns of behaviour and our identity and not seeing how that is used by companies behind the scenes.
What we also missed discussing is not what we see as necessary today, but what we can foresee as necessary for the short term future, brainstorming and crowdsourcing horizon scanning for market needs and changing stakeholder wants.
Here’s the areas of future thinking that smart thinking on the IoT mark could consider.
We are moving towards ever greater requirements to declare identity to use a product or service, to register and log in to use anything at all. How will that change trust in IoT devices?
Single identity sign-on is becoming ever more imposed, and any attempts for multiple presentation of who I am by choice, and dependent on context, therefore restricted. [not all users want to use the same social media credentials for online shopping, with their child’s school app, and their weekend entertainment]
Is this imposition what the public wants or what companies sell us as what customers want in the name of convenience? What I believe the public would really want is the choice to do neither.
There is increasingly no private space or time, at places of work.
Limitations on private space are encroaching in secret in all public city spaces. How will ‘handoffs’ affect privacy in the IoT?
There is too little understanding of the social effects of this connectedness and knowledge created, embedded in design.
What effects may there be on the perception of the IoT as a whole, if predictive data analysis and complex machine learning and AI hidden in black boxes becomes more commonplace and not every company wants to be or can be open-by-design?
Ubiquitous collection and storage of data about users that reveal detailed, inter-connected patterns of behaviour and our identity needs greater commitments to disclosure. Where the hand-offs are to other devices, and whatever else is in the surrounding ecosystem, who has responsibility for communicating interaction through privacy notices, or defining legitimate interests, where the data joined up may be much more revealing than stand-alone data in each silo?
Define with greater clarity the privacy threat models for different groups of stakeholders and address the principles for each.
What would better look like?
The draft privacy principles are a start, but they’re not yet aspirational as I would have hoped. Of course the principles will only be adopted if possible, practical and by those who choose to. But where is the differentiator from what everyone is required to do, and better than the bare minimum? How will you sell this to consumers as new? How would you like your child to be treated?
The wording in these 5 bullet points, is the first crowdsourced starting point.
The supplier of this product or service MUST be General Data Protection Regulation (GDPR) compliant.
This product SHALL NOT disclose data to third parties without my knowledge.
I SHOULD get full access to all the data collected about me.
I MAY operate this device without connecting to the internet.
My data SHALL NOT be used for profiling, marketing or advertising without transparent disclosure.
Yes other points that came under security address some of the crossover between privacy and surveillance risks, but there is as yet little substantial that is aspirational to make the IoT mark a real differentiator in terms of privacy. An opportunity remains.
It was that and how young people perceive privacy that I hoped to bring to the table. Because if manufacturers are serious about future success, they cannot ignore today’s children and how they feel. How you treat them today, will shape future purchasers and their purchasing, and there is evidence you are getting it wrong.
The timing is good in that it now also offers the opportunity to promote consistent understanding, and embed the language of GDPR and ePrivacy regulations into consistent and compatible language in policy and practice in the #IoTmark principles.
User rights I would like to see considered
These are some of the points I would think privacy by design would mean. This would better articulate GDPR Article 25 to consumers.
Data sovereignty is a good concept and I believe should be considered for inclusion in explanatory blurb before any agreed privacy principles.
Goods should by ‘dumb* by default’ until the smart functionality is switched on. [*As our group chair/scribe called it] I would describe this as, “off is the default setting out-of-the-box”.
Privact by design. Deniability by default. i.e. not only after opt out, but a company should not access the personal or identifying purchase data of anyone who opts out of data collection about their product/service use during the set up process.
The right to opt out of data collection at a later date while continuing to use services.
A right to object to the sale or transfer of behavioural data, including to third-party ad networks and absolute opt-in on company transfer of ownership.
A requirement that advertising should be targeted to content, [user bought fridge A] not through jigsaw data held on users by the company [how user uses fridge A, B, C and related behaviour].
An absolute rejection of using children’s personal data gathered to target advertising and marketing at children
Background: Starting points before privacy
After a brief recap on 5 years ago, we heard two talks.
The first was a presentation from Bosch. They used the insights from the IoT open definition from 5 years ago in their IoT thinking and embedded it in their brand book. The presenter suggested that in five years time, every fridge Bosch sells will be ‘smart’. And the second was a fascinating presentation, of both EU thinking and the intellectual nudge to think beyond the practical and think what kind of society we want to see using the IoT in future. Hints of hardcore ethics and philosophy that made my brain fizz from Gerald Santucci, soon to retire from the European Commission.
The principles of open sourcing, manufacturing, and sustainable life cycle were debated in the afternoon with intense arguments and clearly knowledgeable participants, including those who were quiet. But while the group had assigned security, and started work on it weeks before, there was no one pre-assigned to privacy. For me, that said something. If they are serious about those who earn the trustmark being better for customers than their competition, then there needs to be greater emphasis on thinking like their customers, and by their customers, and what use the mark will be to customers, not companies. Plan early public engagement and testing into the design of this IoT mark, and make that testing open and diverse.
To that end, I believe it needed to be articulated more strongly, that sustainable public trust is the primary goal of the principles.
Trust that my device will not become unusable or worthless through updates or lack of them.
Trust that my device is manufactured safely and ethically and with thought given to end of life and the environment.
Trust that my source components are of high standards.
Trust in what data and how that data is gathered and used by the manufacturers.
Fundamental to ‘smart’ devices is their connection to the Internet, and so the last for me, is therefore key to successful public perception and it actually making a difference, beyond the PR value to companies. The value-add must be measured from consumers point of view.
All the openness about design functions and practice improvements, without attempting to change privacy infringing practices, may be wasted effort. Why? Because the perceived benefit of the value of the mark, will be proportionate to what risks it is seen to mitigate.
Because I assume that you know where your source components come from today. I was shocked to find out not all do and that ‘one degree removed’ is going to be an improvement? Holy cow, I thought. What about regulatory requirements for product safety recalls? These differ of course for different product areas, but I was still surprised. Having worked in global Fast Moving Consumer Goods (FMCG) and food industry, semiconductor and optoelectronics, and medical devices it was self-evident for me, that sourcing is rigorous. So that new requirement to know one degree removed, was a suggested minimum. But it might shock consumers to know there is not usually more by default.
Customers also believe they have reasonable expectations of not being screwed by a product update, left with something that does not work because of its computing based components. The public can take vocal, reputation-damaging action when they are let down.
While these are visible, the full extent of the overreach of company market and product surveillance into our whole lives, not just our living rooms, is yet to become understood by the general population. What will happen when it is?
The Internet of Things is exacerbating the power imbalance between consumers and companies, between government and citizens. As Wendy Grossman wrote recently, in one sense this may make privacy advocates’ jobs easier. It was always hard to explain why “privacy” mattered. Power, people understand.
The morning discussion touched quite often on pay-for-privacy models. While product makers may see this as offering a good thing, I strove to bring discussion back to first principles.
Privacy is a human right. There can be no ethical model of discrimination based on any non-consensual invasion of privacy. Privacy is not something I should pay to have. You should not design products that reduce my rights. GDPR requires privacy-by-design and data protection by default. Now is that chance for IoT manufacturers to lead that shift towards higher standards.
We also need a new ethics thinking on acceptable fair use. It won’t change overnight, and perfect may be the enemy of better. But it’s not a battle that companies should think consumers have lost. Human rights and information security should not be on the battlefield at all in the war to win customer loyalty. Now is the time to do better, to be better, demand better for us and in particular, for our children.
Privacy will be a genuine market differentiator
If manufacturers do not want to change their approach to exploiting customer data, they are unlikely to be seen to have changed.
Today feelings that people in US and Europe reflect in surveys are loss of empowerment, feeling helpless, and feeling used. That will shift to shock, resentment, and any change curve will predict, anger.
“The poll of just over two thousand British adults carried out by Ipsos MORI found that the media, internet services such as social media and search engines and telecommunication companies were the least trusted to use personal data appropriately.” [2014, Data trust deficit with lessons for policymakers, Royal Statistical Society]
In the British student population, one 2015 survey of university applicants in England, found of 37,000 who responded, the vast majority of UCAS applicants agree that sharing personal data can benefit them and support public benefit research into university admissions, but they want to stay firmly in control. 90% of respondents said they wanted to be asked for their consent before their personal data is provided outside of the admissions service.
In 2010, a multi method model of research with young people aged 14-18, by the Royal Society of Engineering, found that, “despite their openness to social networking, the Facebook generation have real concerns about the privacy of their medical records.” [2010, Privacy and Prejudice, RAE, Wellcome]
When people use privacy settings on Facebook set to maximum, they believe they get privacy, and understand little of what that means behind the scenes.
“But do you feel like you have privacy today?” I was asked the question in the afternoon. How do people feel today, and does it matter? Companies exploiting consumer data and getting caught doing things the public don’t expect with their data, has repeatedly damaged consumer trust. Data breaches and lack of information security have damaged consumer trust. Both cause reputational harm. Damage to reputation can harm customer loyalty. Damage to customer loyalty costs sales, profit and upsets the Board.
Where overreach into our living rooms has raised awareness of invasive data collection, we are yet to be able to see and understand the invasion of privacy into our thinking and nudge behaviour, into our perception of the world on social media, the effects on decision making that data analytics is enabling as data shows companies ‘how we think’, granting companies access to human minds in the abstract, even before Facebook is there in the flesh.
Governments want to see how we think too, and is thought crime really that far away using database labels of ‘domestic extremists’ for activists and anti-fracking campaigners, or the growing weight of policy makers attention given to predpol, predictive analytics, the [formerly] Cabinet Office Nudge Unit, Google DeepMind et al?
Had the internet remained decentralized the debate may be different.
I am starting to think of the IoT not as the Internet of Things, but as the Internet of Tracking. If some have their way, it will be the Internet of Thinking.
Considering our centralised Internet of Things model, our personal data from human interactions has become the network infrastructure, and data flows, are controlled by others. Our brains are the new data servers.
In the Internet of Tracking, people become the end nodes, not things.
And it is this where the future users will be so important. Do you understand and plan for factors that will drive push back, and crash of consumer confidence in your products, and take it seriously?
Companies have a choice to act as Empires would – multinationals, joining up even on low levels, disempowering individuals and sucking knowledge and power at the centre. Or they can act as Nation states ensuring citizens keep their sovereignty and control over a selected sense of self.
Look at Brexit. Look at the GE2017. Tell me, what do you see is the direction of travel? Companies can fight it, but will not defeat how people feel. No matter how much they hope ‘nudge’ and predictive analytics might give them this power, the people can take back control.
What might this desire to take-back-control mean for future consumer models? The afternoon discussion whilst intense, reached fairly simplistic concluding statements on privacy. We could have done with at least another hour.
Some in the group were frustrated “we seem to be going backwards” in current approaches to privacy and with GDPR.
But if the current legislation is reactive because companies have misbehaved, how will that be rectified for future? The challenge in the IoT both in terms of security and privacy, AND in terms of public perception and reputation management, is that you are dependent on the behaviours of the network, and those around you. Good and bad. And bad practices by one, can endanger others, in all senses.
If you believe that is going back to reclaim a growing sense of citizens’ rights, rather than accepting companies have the outsourced power to control the rights of others, that may be true.
There was a first principle asked whether any element on privacy was needed at all, if the text was simply to state, that the supplier of this product or service must be General Data Protection Regulation (GDPR) compliant. The GDPR was years in the making after all. Does it matter more in the IoT and in what ways? The room tended, understandably, to talk about it from the company perspective. “We can’t” “won’t” “that would stop us from XYZ.” Privacy would however be better addressed from the personal point of view.
What do people want?
From the company point of view, the language is different and holds clues. Openness, control, and user choice and pay for privacy are not the same thing as the basic human right to be left alone. Afternoon discussion reminded me of the 2014 WAPO article, discussing Mark Zuckerberg’s theory of privacy and a Palo Alto meeting at Facebook:
“Not one person ever uttered the word “privacy” in their responses to us. Instead, they talked about “user control” or “user options” or promoted the “openness of the platform.” It was as if a memo had been circulated that morning instructing them never to use the word “privacy.””
In the afternoon working group on privacy, there was robust discussion whether we had consensus on what privacy even means. Words like autonomy, control, and choice came up a lot. But it was only a beginning. There is opportunity for better. An academic voice raised the concept of sovereignty with which I agreed, but how and where to fit it into wording, which is at once both minimal and applied, and under a scribe who appeared frustrated and wanted a completely different approach from what he heard across the group, meant it was left out.
This group do care about privacy. But I wasn’t convinced that the room cared in the way that the public as a whole does, but rather only as consumers and customers do. But IoT products will affect potentially everyone, even those who do not buy your stuff. Everyone in that room, agreed on one thing. The status quo is not good enough. What we did not agree on, was why, and what was the minimum change needed to make a enough of a difference that matters.
I share the deep concerns of many child rights academics who see the harm that efforts to avoid restrictions Article 8 the GDPR will impose. It is likely to be damaging for children’s right to access information, be discriminatory according to parents’ prejudices or socio-economic status, and ‘cheating’ – requiring secrecy rather than privacy, in attempts to hide or work round the stringent system.
In ‘The Class’ the research showed, ” teachers and young people have a lot invested in keeping their spheres of interest and identity separate, under their autonomous control, and away from the scrutiny of each other.” [2016, Livingstone and Sefton-Green, p235]
Employers require staff use devices with single sign including web and activity tracking and monitoring software. Employee personal data and employment data are blended. Who owns that data, what rights will employees have to refuse what they see as excessive, and is it manageable given the power imbalance between employer and employee?
What is this doing in the classroom and boardroom for stress, anxiety, performance and system and social avoidance strategies?
A desire for convenience creates shortcuts, and these are often met using systems that require a sign-on through the platforms giants: Google, Facebook, Twitter, et al. But we are kept in the dark how by using these platforms, that gives access to them, and the companies, to see how our online and offline activity is all joined up.
Any illusion of privacy we maintain, we discussed, is not choice or control if based on ignorance, and backlash against companies lack of efforts to ensure disclosure and understanding is growing.
“The lack of accountability isn’t just troubling from a philosophical perspective. It’s dangerous in a political climate where people are pushing back at the very idea of globalization. There’s no industry more globalized than tech, and no industry more vulnerable to a potential backlash.”
If your connected *thing* requires registration, why does it? How about a commitment to not forcing one of these registration methods or indeed any at all? Social Media Research by Pew Research in 2016 found that 56% of smartphone owners ages 18 to 29 use auto-delete apps, more than four times the share among those 30-49 (13%) and six times the share among those 50 or older (9%).
Does that tell us anything about the demographics of data retention preferences?
In 2012, they suggested social media has changed the public discussion about managing “privacy” online. When asked, people say that privacy is important to them; when observed, people’s actions seem to suggest otherwise.
Does that tell us anything about how well companies communicate to consumers how their data is used and what rights they have?
There is also data with strong indications about how women act to protect their privacy more but when it comes to basic privacy settings, users of all ages are equally likely to choose a private, semi-private or public setting for their profile. There are no significant variations across age groups in the US sample.
Now think about why that matters for the IoT? I wonder who makes the bulk of purchasing decsions about household white goods for example and has Bosch factored that into their smart-fridges-only decision?
Do you *need* to know who the user is? Can the smart user choose to stay anonymous at all?
The day’s morning challenge was to attend more than one interesting discussion happening at the same time. As invariably happens, the session notes and quotes are always out of context and can’t possibly capture everything, no matter how amazing the volunteer (with thanks!). But here are some of the discussion points from the session on the body and health devices, the home, and privacy. It also included a discussion on racial discrimination, algorithmic bias, and the reasons why care.data failed patients and failed as a programme. We had lengthy discussion on ethics and privacy: smart meters, objections to models of price discrimination, and why pay-for-privacy harms the poor by design.
Smart meter data can track the use of unique appliances inside a person’s home and intimate patterns of behaviour. Information about our consumption of power, what and when every day, reveals personal details about everyday lives, our interactions with others, and personal habits.
Why should company convenience come above the consumer’s? Why should government powers, trump personal rights?
Smart meter is among the knowledge that government is exploiting, without consent, to discover a whole range of issues, including ensuring that “Troubled Families are identified”. Knowing how dodgy some of the school behaviour data might be, that helps define who is “troubled” there is a real question here, is this sound data science? How are errors identified? What about privacy? It’s not your policy, but if it is your product, what are your responsibilities?
If companies do not respect children’s rights, you’d better shape up to be GDPR compliant
For children and young people, more vulnerable to nudge, and while developing their sense of self can involve forming, and questioning their identity, these influences need oversight or be avoided.
In terms of GDPR, providers are going to pay particular attention to Article 8 ‘information society services’ and parental consent, Article 17 on profiling, and rights to restriction of processing (19) right to erasure in recital 65 and rights to portability. (20) However, they may need to simply reassess their exploitation of children and young people’s personal data and behavioural data. Article 57 requires special attention to be paid by regulators to activities specifically targeted at children, as ‘vulnerable natural persons’ of recital 75.
Human Rights, regulations and conventions overlap in similar principles that demand respect for a child, and right to be let alone:
(a) The development of the child ‘s personality, talents and mental and physical abilities to their fullest potential;
(b) The development of respect for human rights and fundamental freedoms, and for the principles enshrined in the Charter of the United Nations.
A weakness of the GDPR is that it allows derogation on age and will create inequality and inconsistency for children as a result. By comparison Article one of the Convention on the Rights of the Child (CRC) defines who is to be considered a “child” for the purposes of the CRC, and states that: “For the purposes of the present Convention, a child means every human being below the age of eighteen years unless, under the law applicable to the child, majority is attained earlier.”<
Article two of the CRC says that States Parties shall respect and ensure the rights set forth in the present Convention to each child within their jurisdiction without discrimination of any kind.
CRC Article 16 says that no child shall be subjected to arbitrary or unlawful interference with his or her honour and reputation.
Article 8 CRC requires respect for the right of the child to preserve his or her identity […] without unlawful interference.
Article 12 CRC demands States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.
That stands in potential conflict with GDPR article 8. There is much on GDPR on derogations by country, and or children, still to be set.
What next for our data in the wild
Hosting the event at the zoo offered added animals, and during a lunch tour we got out on a tour, kindly hosted by a fellow participant. We learned how smart technology was embedded in some of the animal enclosures, and work on temperature sensors with penguins for example. I love tigers, so it was a bonus that we got to see such beautiful and powerful animals up close, if a little sad for their circumstances and as a general basic principle, seeing big animals caged as opposed to in-the-wild.
Freedom is a common desire in all animals. Physical, mental, and freedom from control by others.
I think any manufacturer that underestimates this element of human instinct is ignoring the ‘hidden dragon’ that some think is a myth. Privacy is not dead. It is not extinct, or even unlike the beautiful tigers, endangered. Privacy in the IoT at its most basic, is the right to control our purchasing power. The ultimate people power waiting to be sprung. Truly a crouching tiger. People object to being used and if companies continue to do so without full disclosure, they do so at their peril. Companies seem all-powerful in the battle for privacy, but they are not. Even insurers and data brokers must be fair and lawful, and it is for regulators to ensure that practices meet the law.
When consumers realise our data, our purchasing power has the potential to control, not be controlled, that balance will shift.
“Paper tigers” are superficially powerful but are prone to overextension that leads to sudden collapse. If that happens to the superficially powerful companies that choose unethical and bad practice, as a result of better data privacy and data ethics, then bring it on.
I hope that the IoT mark can champion best practices and make a difference to benefit everyone.
While the companies involved in its design may be interested in consumers, I believe it could be better for everyone, done well. The great thing about the efforts into an #IoTmark is that it is a collective effort to improve the whole ecosystem.
I hope more companies will realise their privacy rights and ethical responsibility in the world to all people, including those interested in just being, those who want to be let alone, and not just those buying.
“If a cat is called a tiger it can easily be dismissed as a paper tiger; the question remains however why one was so scared of the cat in the first place.”
Update received from Edmodo, VP Marketing & Adoption, June 1:
While everyone is focused on #WannaCry ransomware, it appears that a global edTech company has had a potential global data breach that few are yet talking about.
Edmodo is still claiming on its website it is, “The safest and easiest way for teachers to connect and collaborate with students, parents, and each other.” But is it true, and who verifies that safe is safe?
Edmodo data from 78 million users for sale
Matt Burgess wrote in VICE: “Education website Edmodo promises a way for “educators to connect and collaborate with students, parents, and each other”. However, 78 million of its customers have had their user account details stolen. Vice’s Motherboard reports that usernames, email addresses, and hashed passwords were taken from the service and have been put up for sale on the dark web for around $1,000 (£700).
“Data breach notification website LeakBase also has a copy of the data and provided it to Motherboard. According to LeakBase around 40 million of the accounts have email addresses connected to them. The company said it is aware of a “potential security incident” and is investigating.”
The Motherboard article by Joseph Cox, says it happened last month. What has been done since? Why is there no public information or notification about the breach on the company website?
Joseph doesn’t think profile photos are at risk, unless someone can log into an account. He was given usernames, email addresses, and hashed passwords, and as far as he knows, that was all that was stolen.
“The passwords have apparently been hashed with the robust bcrypt algorithm, and a string of random characters known as a salt, meaning hackers will have a much harder time obtaining user’s actual login credentials. Not all of the records include a user email address.”
So far I’ve been unable to find out from Edmodo directly. There is no telephone technical support. There is no human that can be reached dialling the headquarters telephone number.
Where’s the parental update?
No one has yet responded to say whether UK pupils and teachers’ data was among that reportedly stolen. (Update June 1, the company did respond with confirmation of UK users involved.)
While there is no mention of the other data the site holds being in the breach, details are as yet sketchy, and Edmodo holds children’s data. Where is the company assurance what was and was not stolen?
As it’s a platform log on I would want to know when parents will be told exactly what was compromised and how details have been exposed. I would want clarification if this could potentially be a weakness for further breaches of other integrated systems, or not.
Are edTech and IoT toys fit for UK children?
In 2016, more than 727,000 UK children had their information compromised following a cyber attack on VTech, including images. These toys are sold as educational, even if targeted at an early age.
In Spring 2017, CloudPets, the maker of Internet of Things teddy bears, “smart toys” left more than two million voice recordings from children online without any security protections and exposing children’s personal details.
As yet UK ministers have declined our civil society recommendations to act and take steps on the public sector security of national pupil data or on the private security of Internet connected toys and things. The latter in line with Germany for example.
It is right that the approach is considered. The UK government must take these risks seriously in an evidence based and informed way, and act, not with knee jerk reactions. But it must act.
Two months after Germany banned the Cayla doll, we still had them for sale here.
Parents are often accused of being uninformed, but we must be able to expect that our products pass a minimum standard of tech and data security testing as part of pre-sale consumer safety testing.
Parents have a responsibility to educate themselves to a reasonable level of user knowledge. But the opportunities are limited when there’s no transparency. Much of the use of a child’s personal data and system data’s interaction with our online behaviour, in toys, things, and even plain websites remains hidden to most of us.
How will the uses of these smart toys, and edTech apps be made safe, and is the government going to update regulations to do so?
Are public sector policy, practice and people, fit for managing UK children’s data privacy needs?
While these private edTech companies used directly in schools can expose children to risk, so too does public data collected in schools, being handed out to commercial companies, by government departments. Our UK government does not model good practice.
Two years on, I’m still working on asking for fixes in basic national pupil data improvement. To make safe data policy, this is far too slow.
These uses of data are not safe, and expose children to potential greater theft, loss and selling of their personal data. It must change.
Whether the government hands out children’s data to commercial companies at national level and doesn’t tell schools, or staff in schools do it directly through in-class app registrations, it is often done without consent, and without any privacy impact assessment or due diligence up front. Some send data to the US or Australia. Schools still tell parents these are ‘required’ without any choice. But have they ensured that there is an equal and adequate level of data protection offered to personal data that they extract from the SIMs?
School staff and teachers manage, collect, administer personal data daily, including signing up children as users of web accounts with technology providers. Very often telling parents after the event, and with no choice. How can they and not put others at risk, if untrained in the basics of good data handling practices?
In our UK schools, just like the health system, the basics are still not being fixed or good practices on offer to staff. Teachers in the UK, get no data privacy or data protection training in their basic teacher training. That’s according to what I’ve been told so far from teacher trainers, CDP leaders, union members and teachers themselves,
Would you train fire fighters without ever letting them have hose practice?
Infrastructure is known to be exposed and under invested, but it’s not all about the tech. Security investment must also be in people.
Systemic failures seen this week revealed by WannaCry are not limited to the NHS. This from George Danezis could be, with few tweaks, copy pasted into education. So the question is not if, but when the same happens in education, unless it’s fixed.
“…from poor security standards in heath informatics industries; poor procurement processes in heath organizations; lack of liability on any of the software vendors (incl. Microsoft) for providing insecure software or devices; cost-cutting from the government on NHS cyber security with no constructive alternatives to mitigate risks; and finally the UK/US cyber-offense doctrine that inevitably leads to proliferation of cyber-weapons and their use on civilian critical infrastructures.” [Original post]
“With the Family Link app from Google, you can stay in the loop as your kid explores on their Android* device. Family Link lets you create a Google Account for your kid that’s like your account, while also helping you set certain digital ground rules that work for your family — like managing the apps your kid can use, keeping an eye on screen time, and setting a bedtime on your kid’s device.”
John Carr shared his blog post about the Google Family Link today which was the first I had read about the new US account in beta. In his post, with an eye on GDPR, he asks, what is the right thing to do?
What is the Family Link app?
Family Link requires a US based google account to sign up, so outside the US we can’t read the full details. However from what is published online, it appears to offer the following three key features:
“Approve or block the apps your kid wants to download from the Google Play Store.
Keep an eye on screen time. See how much time your kid spends on their favorite apps with weekly or monthly activity reports, and set daily screen time limits for their device. “
“Set device bedtime: Remotely lock your kid’s device when it’s time to play, study, or sleep.”
From the privacy and disclosure information it reads that there is not a lot of difference between a regular (over 13s) Google account and this one for under 13s. To collect data from under 13s it must be compliant with COPPA legislation.
If you google “what is COPPA” the first result says, “The Children’s Online Privacy Protection Act (COPPA) is a law created to protect the privacy of children under 13.”
But does this Google Family Link do that? What safeguards and controls are in place for use of this app and children’s privacy?
What data does it capture?
Google captures the parent’s verified real-life credit card data.
Google captures child’s name, date of birth and email.
Google captures voice.
Google captures location.
Google may associate your child’s phone number with their account.
And lots more:
Google automatically collects and stores certain information about the services a child uses and how a child uses them, including when they save a picture in Google Photos, enter a query in Google Search, create a document in Google Drive, talk to the Google Assistant, or watch a video in YouTube Kids.
What does it offer over regular “13+ Google”?
In terms of general safeguarding, it doesn’t appear that SafeSearch is on by default but must be set and enforced by a parent.
Parents should “review and adjust your child’s Google Play settings based on what you think is right for them.”
Google rightly points out however that, “filters like SafeSearch are not perfect, so explicit, graphic, or other content you may not want your child to see makes it through sometimes.”
Ron Amadeo at Arstechnica wrote a review of the Family Link app back in February, and came to similar conclusions about added safeguarding value:
“Other than not showing “personalized” ads to kids, data collection and storage seems to work just like in a regular Google account. On the “Disclosure for Parents” page, Google notes that “your child’s Google Account will be like your own” and “Most of these products and services have not been designed or tailored for children.” Google won’t do any special content blocking on a kid’s device, so they can still get into plenty of trouble even with a monitored Google account.”
Your child will be able to share information, including photos, videos, audio, and location, publicly and with others, when signed in with their Google Account. And Google wants to see those photos.
There’s some things that parents cannot block at all.
Installs of app updates can’t be controlled, so leave a questionable grey area. Many apps are built on classic bait and switch – start with a free version and then the upgrade contains paid features. This is therefore something to watch for.
“Regardless of the approval settings you choose for your child’s purchases and downloads, you won’t be asked to provide approval in some instances, such as if your child: re-downloads an app or other content; installs an update to an app (even an update that adds content or asks for additional data or permissions); or downloads shared content from your Google Play Family Library. “
The child “will have the ability to change their activity controls, delete their past activity in “My Activity,” and grant app permissions (including things like device location, microphone, or contacts) to third parties”.
What’s in it for children?
You could argue that this gives children “their own accounts” and autonomy. But why do they need one at all? If I give my child a device on which they can download an app, then I approve it first.
If I am not aware of my under 13 year old child’s Internet time physically, then I’m probably not a parent who’s going to care to monitor it much by remote app either. Is there enough insecurity around ‘what children under 13 really do online’, versus what I see or they tell me as a parent, that warrants 24/7 built-in surveillance software?
I can use safe settings without this app. I can use a device time limiting app without creating a Google account for my child.
If parents want to give children an email address, yes, this allows them to have a device linked Gmail account to which you as a parent, cannot access content. But wait a minute, what’s this. Google can?
Google can read their mails and provide them “personalised product features”. More detail is probably needed but this seems clear:
“Our automated systems analyze your child’s content (including emails) to provide your child personally relevant product features, such as customized search results and spam and malware detection.”
And what happens when the under 13s turn 13? It’s questionable that it is right for Google et al. to then be able draw on a pool of ready-made customers’ data in waiting. Free from COPPA ad regulation. Free from COPPA privacy regulation.
Google knows when the child reaches 13 (the set-up requires a child’s date of birth, their first and last name, and email address, to set up the account). And they will inform the child directly when they become eligible to sign up to a regular account free of parental oversight.
What a birthday gift. But is it packaged for the child or Google?
What’s in it for Google?
The parental disclosure begins,
“At Google, your trust is a priority for us.”
Google’s disclosure policy also makes parents read a lot before you fully understand the permissions this app gives to Google.
I do not believe Family Link gives parents adequate control of their children’s privacy at all nor does it protect children from predatory practices.
While “Google will not serve personalized ads to your child“, your child “will still see ads while using Google’s services.”
Google also tailors the Family Link apps that the child sees, (and begs you to buy) based on their data:
“(including combining personal information from one service with information, including personal information, from other Google services) to offer them tailored content, such as more relevant app recommendations or search results.”
Contextual advertising using “persistent identifiers” is permitted under COPPA, and is surely a fundamental flaw. It’s certainly one I wouldn’t want to see duplicated under GDPR. Serving up ads that are relevant to the content the child is using, doesn’t protect them from predatory ads at all.
Google captures geolocators and knows where a child is and builds up their behavioural and location patterns. Google, like other online companies, captures and uses what I’ve labelled ‘your synthesised self’; the mix of online and offline identity and behavioural data about a user. In this case, the who and where and what they are doing, are the synthesised selves of under 13 year old children.
These data are made more valuable by the connection to an adult with spending power.
Google’s ad network consists of Google services, like Search, YouTube and Gmail, as well as 2+ million non-Google websites and apps that partner with Google to show ads.
I also wonder if it will undo some of the previous pro-privacy features on any linked child’s YouTube account if Google links any logged in accounts across the Family Link and YouTube platforms.
Is this pseudo-safe use a good thing?
In practical terms, I’d suggest this app is likely to lull parents into a false sense of security. Privacy safeguarding is not the default set up.
It’s questionable that Google should adopt some sort of parenting role through an app. Parental remote controls via an app isn’t an appropriate way to regulate whether my under 13 year old is using their device, rather than sleeping.
It’s also got to raise questions about children’s autonomy at say, 12. Should I as a parent know exactly every website and app that my child visits? What does that do for parental-child trust and relations?
As for my own children I see no benefit compared with letting them have supervised access as I do already. That is without compromising my debit card details, or under a false sense of safeguarding. Their online time is based on age appropriate education and trust, and yes I have to manage their viewing time.
That said, if there are people who think parents cannot do that, is the app a step forward? I’m not convinced. It’s definitely of benefit to Google. But for families it feels more like a sop to adults who feel a duty towards safeguarding children, but aren’t sure how to do it.
Is this the best that Google can do by children?
In summary it seems to me that the Family Link app is a free gift from Google. (Well, free after the thirty cents to prove you’re a card-carrying adult.)
It gives parents three key tools: App approval (accept, pay, or block), Screen-time surveillance, and a remote Switch Off of child’s access.
In return, Google gets access to a valuable data set – a parent-child relationship with credit data attached – and can increase its potential targeted app sales. Yet Google can’t guarantee additional safeguarding, privacy, or benefits for the child while using it.
I think for families and child rights, it’s a false friend. None of these tools per se require a Google account. There are alternatives.
Children’s use of the Internet should not mean they are used and their personal data passed around or traded in hidden back room bidding by the Internet companies, with no hope of control.
There are other technical solutions to age verification and privacy too.
I’d ask, what else has Google considered and discarded?
Is this the best that a cutting edge technology giant can muster?
This isn’t designed to respect children’s rights as intended under COPPA or ready for GDPR, and it’s a shame they’re not trying.
If I were designing Family Link for children, it would collect no real identifiers. No voice. No locators. It would not permit others access to voice or images or need linked. It would keep children’s privacy intact, and enable them when older, to decide what they disclose. It would not target personalised apps/products at children at all.
GDPR requires active, informed parental consent for children’s online services. It must be revocable, personal data must collect the minimum necessary and be portable. Privacy policies must be clear to children. This, in terms of GDPR readiness, is nowhere near ‘it’.
Family Link needs to re-do their homework. And this isn’t a case of ‘please revise’.
Google is a multi-billion dollar company. If they want parental trust, and want to be GDPR and COPPA compliant, they should do the right thing.
When it comes to child rights, companies must do or do not. There is no try.
Notes and thoughts from Full Fact’s event at Newspeak House in London on 27/3 to discuss fake news, the misinformation ecosystem, and how best to respond. The recording is here. The contributions and questions part of the evening began from 55.55.
What is fake news? Are there solutions?
1. Clickbait: celebrity pull to draw online site visitors towards traffic to an advertising model – kill the business model
2. Mischief makers: Deceptive with hostile intent – bots, trolls, with an agenda
3. Incorrectly held views: ‘vaccinations cause autism’ despite the evidence to the contrary. How can facts reach people who only believe what they want to believe?
Why does it matter? The scrutiny of people in power matters – to politicians, charities, think tanks – as well as the public.
It is fundamental to remember that we do in general believe that the public has a sense of discernment, however there is also a disconnect between an objective truth and some people’s perception of reality. Can this conflict be resolved? Is it necessary to do so? If yes, when is it necessary to do so and who decides that?
There is a role for independent tracing of unreliable information, its sources and its distribution patterns and identifying who continues to circulate fake news even when asked to desist.
Transparency about these processes is in the public interest.
Overall, there is too little public understanding of how technology and online tools affect behaviours and decision-making.
The Role of Media in Society
How do you define the media?
How can average news consumers distinguish between self-made and distributed content compared with established news sources?
What is the role of media in a democracy?
What is the mainstream media?
Does the media really represent what I want to understand? > Does the media play a role in failure of democracy if news is not representative of all views? > see Brexit, see Trump
What are news values and do we have common press ethics?
New problems in the current press model:
Failure of the traditional media organisations in fact checking; part of the problem is that the credible media is under incredible pressure to compete to gain advertising money share.
Journalism is under resourced. Verification skills are lacking and tools can be time consuming. Techniques like reverse image search, and verification take effort.
Press releases with numbers can be less easily scrutinised so how do we ensure there is not misinformation through poor journalism?
What about confirmation bias and reinforcement?
What about friends’ behaviours? Can and should we try to break these links if we are not getting a fair picture? The Facebook representative was keen to push responsibility for the bubble entirely to users’ choices. Is this fair given the opacity of the model?
Have we cracked the bubble of self-reinforcing stories being the only stories that mutual friends see?
Can we crack the echo chamber?
How do we start to change behaviours? Can we? Should we?
The risk is that if people start to feel nothing is trustworthy, we trust nothing. This harms relations between citizens and state, organisations and consumers, professionals and public and between us all. Community is built on relationships. Relationships are built on trust. Trust is fundamental to a functioning society and economy.
Is it game over?
Will Moy assured the audience that there is no need to descend into blind panic and there is still discernment among the public.
Then, it was asked, is perhaps part of the problem that the Internet is incapable in its current construct to keep this problem at bay? Is part of the solution re-architecturing and re-engineering the web?
What about algorithms? Search engines start with word frequency and neutral decisions but are now much more nuanced and complex. We really must see how systems decide what is published. Search engines provide but also restrict our access to facts and ‘no one gets past page 2 of search results’. Lack of algorithmic transparency is an issue, but will not be solved due to commercial sensitivities.
Fake news creation can be lucrative. Mangement models that rely on user moderation or comments to give balance can be gamed.
Are there appropriate responses to the grey area between trolling and deliberate deception through fake news that is damaging? In what context and background? Are all communities treated equally?
The question came from the audience whether the panel thought regulation would come from the select committee inquiry. The general response was that it was unlikely.
What are the solutions?
The questions I came away thinking about went unanswered, because I am not sure there are solutions as long as the current news model exists and is funded in the current way by current players.
I believe one of the things that permits fake news is the growing imbalance of money between the big global news distributors and independent and public interest news sources.
This loss of balance, reduces our ability to decide for ourselves what we believe and what matters to us.
The monetisation of news through its packaging in between advertising has surely contaminated the news content itself.
Think of a Facebook promoted post – you can personalise your audience to a set of very narrow and selective characteristics. The bubble that receives that news is already likely to be connected by similar interest pages and friends and the story becomes self reinforcing, showing up in friends’ timelines.
A modern online newsroom moves content on the webpage around according to what is getting the most views and trending topics in a list encourage the viewers to see what other people are reading, and again, are self reinforcing.
There is also a lack of transparency of power. Where we see a range of choices from which we may choose to digest a range of news, we often fail to see one conglomerate funder which manages them all.
The discussion didn’t address at all the fundamental shift in “what is news” which has taken place over the last twenty years. In part, I believe the responsibility for the credibility level of fake news in viewers lies with 24/7 news channels. They have shifted the balance of content from factual bulletins, to discussion and opinion. Now while the news channel is seen as a source of ‘news’ much of the time, the content is not factual, but opinion, and often that means the promotion and discussion of the opinions of their paymaster.
Most simply, how should I answer the question that my ten year old asks – how do I know if something on the Internet is true or not?
Can we really say it is up to the public to each take on this role and where do we fit the needs of the vulnerable or children into that?
Is the term fake news the wrong approach and something to move away from? Can we move solutions away from target-fixation ‘stop fake news’ which is impossible online, but towards what the problems are that fake news cause?
Interference in democracy. Interference in purchasing power. Interference in decision making. Interference in our emotions.
These interferences with our autonomy is not something that the web is responsible for, but the people behind the platforms must be accountable for how their technology works.
In the mean time, what can we do?
“if we ever want the spread of fake news to stop we have to take responsibility for calling out those who share fake news (real fake news, not just things that feel wrong), and start doing a bit of basic fact-checking ourselves.” [IB Times, Eliot Higgins is the founder of Bellingcat]
Not everyone has the time or capacity to each do that. As long as today’s imbalance of money and power exists, truly independent organisations like Bellingcat and FullFact have an untold value.
So what’s the solution? If the new opt out methods aren’t working, then back to the old ones and making Section 10 requests? But it seems the Information Centre isn’t keen on making that work either.
All the data the HSCIC holds is sensitive and as such, its release risks patients’ significant harm or distress  so it shouldn’t be difficult to tell them to cease and desist, when it comes to data about you.
But how is NHS Digital responding to people who make the effort to write directly?
If anyone asks that their hospital data should not be used in any format and passed to third parties, that’s surely for them to decide.
Let’s take the case study of a woman who spoke to me during the whole care.data debacle who had been let down by the records system after rape. Her NHS records subsequently about her mental health care were inaccurate, and had led to her being denied the benefit of private health insurance at a new job.
Would she have to detail why selling her medical records would cause her distress? What level of detail is fair and who decides? The whole point is, you want to keep info confidential.
Given the long list of commercial companies, charities, think tanks and others that passing out our sensitive data puts at risk and given the Information Centre’s past record, HSCIC might be grateful they have only opt out requests to deal with, and not millions of medical ethics court summonses. So far.
HSCIC / NHS Digital has extracted our identifiable records and has given them away, including for commercial product use, and continues give them away, without informing us. We’ve accepted Ministers’ statements and that a solution would be found. Two years on, patience wears thin.
“Without that external trust, we risk losing our public mandate and then cannot offer the vital insights that quality healthcare requires.”
In 2014 the public was told there should be no more surprises. This latest response is not only a surprise but enormously disrespectful.
When you’re trying to rebuild trust, assuming that we accept that ‘is’ the aim, you can’t say one thing, and do another. Perhaps the Department for Health doesn’t like the public answer to what the public wants from opt out, but that doesn’t make the DH view right.
Perhaps NHS Digital doesn’t want to deal with lots of individual opt out requests, that doesn’t make their refusal right.
Kingsley Manning recognised in July 2014, that the Information Centre “had made big mistakes over the last 10 years.” And there was “a once-in-a-generation chance to get it right.”
I didn’t think I’d have to move into the next one before they fix it.
“A patient can object to their confidential personal information from being disclosed out of the GP Practice and/or from being shared onwards by the HSCIC for non-direct care purposes (secondary purposes).”
But the same questions are being asked again around consent and use of your medical data, from primary and secondary care. What a very long questionnaire asks is in effect, do you want to keep your medical history private? You can answer only Q 15 if you want.
Ambiguity again surrounds what constitutes “de-identified” patient information.
What is clear is that public voice seems to have been deleted or lost from the care.data programme along with the feedback and brand.
Upcoming events cost time and money and will almost certainly go over the same ground that hours and hours were spent on in 2014. However if they do achieve a meaningful response rate, then I hope the results will not be lost and will be combined with those already captured under the ‘care.data listening events’ responses. Will they have any impact on what consent model there may be in future?
So what we gonna do? I don’t know, whatcha wanna do? Let’s do something.
Let’s have clear future scope and control. There is still no plan to give the public rights to control or delete data if we change our minds who can have it or for what purposes. And that is very uncertain. After all, they might decide to privatise or outsource the whole thing as was planned for the CSUs.
We have the possibility to see health data used wisely, safely, and with public trust. But we seem stuck with the same notes again. And the public seem to be the last to be invited to participate and views once gathered, seem to be disregarded. I hope to be proved wrong.
Might, perhaps, the consultation deliver the nuanced consent model discussed at public listening exercises that many asked for?
Will the care.data listening events feedback summary be found, and will its 2014 conclusions and the enacted opt out be ignored? Will the new listening event view make more difference than in 2014?
Is public engagement, engagement, if nobody hears what was said?
“Lawmaking is the Wire, not Schoolhouse Rock. It’s about blood and war and power, not evidence and argument and policy.”
"We can't trust the regulators," they say. "We need to be able to investigate the data for ourselves." Technology seems to provide the perfect solution. Just put it all online - people can go through the data while trusting no one. There's just one problem. If you can't trust the regulators, what makes you think you can trust the data?"
Extracts from The Boy Who Could Change the World: The Writings of Aaron Swartz. Chapter: ‘When is Technology Useful? ‘ June 2009.
The question keeps getting asked, is the concept of ethics obsolete in Big Data?
I’ve come to some conclusions why ‘Big Data’ use keeps pushing the boundaries of what many people find acceptable, and yet the people doing the research, the regulators and lawmakers often express surprise at negative reactions. Some even express disdain for public opinion, dismissing it as ignorant, not ‘understanding the benefits’, yet to be convinced. I’ve decided why I think what is considered ‘ethical’ in data science does not meet public expectation.
It’s not about people.
Researchers using large datasets, often have a foundation in data science, applied computing, maths, and don’t see data as people. It’s only data. Creating patterns, correlations, and analysis of individual level data are not seen as research involving human subjects.
This is embodied in the nth number of research ethics reviews I have read in the last year in which the question is asked, does the research involve people? The answer given is invariably ‘no’.
And these data analysts using, let’s say health data, are not working in a subject that is founded on any ethical principle, contrasting with the medical world the data come from.
The public feels differently about the information that is about them, and may be known, only to them or select professionals. The values that we as the public attach to our data and expectations of its handling may reflect the expectation we have of handling of us as people who are connected to it. We see our data as all about us.
The values that are therefore put on data, and on how it can and should be used, can be at odds with one another, the public perception is not reciprocated by the researchers. This may be especially true if researchers are using data which has been de-identified, although it may not be anonymous.
New legislation on the horizon, the Better Use of Data in Government, intends to fill the [loop]hole between what was legal to share in the past and what some want to exploit today, and emphasises a gap in the uses of data by public interest, academic researchers, and uses by government actors. The first incorporate by-and-large privacy and anonymisation techniques by design, versus the second designed for applied use of identifiable data.
Government departments and public bodies want to identify and track people who are somehow misaligned with the values of the system; either through fraud, debt, Troubled Families, or owing Student Loans. All highly sensitive subjects. But their ethical data science framework will not treat them as individuals, but only as data subjects. Or as groups who share certain characteristics.
The system again intrinsically fails to see these uses of data as being about individuals, but sees them as categories of people – “fraud” “debt” “Troubled families.” It is designed to profile people.
We can’t afford for these things to be so off axis, if civil service thinking is exploring “potential game-changers such as virtual reality for citizens in the autism spectrum, biometrics to reduce fraud, and data science and machine-learning to automate decisions.”
In an organisation such as DWP this must be really well designed since “the scale at which we operate is unprecedented: with 800 locations and 85,000 colleagues, we’re larger than most retail operations.”
The power to affect individual lives through poor technology is vast and some impacts seem to be being badly ignored. The ‘‘real time earnings’ database improved accuracy of benefit payments was widely agreed to have been harmful to some individuals through the Universal Credit scheme, with delayed payments meaning families at foodbanks, and contributing to worse.
“We believe execution is the major job of every business leader,” perhaps not the best wording in on DWP data uses.
What accountability will be built-by design?
I’ve been thinking recently about drawing a social ecological model of personal data empowerment or control. Thinking about visualisation of wants, gaps and consent models, to show rather than tell policy makers where these gaps exist in public perception and expectations, policy and practice. If anyone knows of one on data, please shout. I think it might be helpful.
But the data *is* all about people
Regardless whether they are in front of you or numbers on a screen, big or small datasets using data about real lives are data about people. And that triggers a need to treat the data with an ethical approach as you would people involved face-to-face.
Researchers need to stop treating data about people as meaningless data because that’s not how people think about their own data being used. Not only that, but if the whole point of your big data research is to have impact, your data outcomes, will change lives.
Tosh, I know some say. But, I have argued, the reason being is that the applications of the data science/ research/ policy findings / impact of immigration in education review / [insert purposes of the data user’s choosing] are designed to have impact on people. Often the people about whom the research is done without their knowledge or consent. And while most people say that is OK, where it’s public interest research, the possibilities are outstripping what the public has expressed as acceptable, and few seem to care.
Evidence from public engagement and ethics all say, hidden pigeon-holing, profiling, is unacceptable. Data Protection law has special requirements for it, on autonomous decisions. ‘Profiling’ is now clearly defined under article 4 of the GDPR as ” any form of automated processing of personal data consisting of using those data to evaluate certain personal aspects relating to a natural person, in particular to analyse or predict aspects concerning that natural person’s performance at work, economic situation, health, personal preferences, interests, reliability, behaviour, location or movements.”
Using big datasets for research that ‘isn’t interested in individuals’ may still intend to create results profiling groups for applied policing, or discriminate, to make knowledge available by location. The data may have been deidentified, but in application becomes no longer anonymous.
Big Data research that results in profiling groups with the intent for applied health policy impacts for good, may by the very point of research, with the intent of improving a particular ethnic minority access to services, for example.
Is it possible to have ethical oversight that can protect good data use and protect people’s rights if they conflict with the policy purposes?
The “clear legal basis”is not enough for public trust
Data use can be legal and can still be unethical, harmful and shortsighted in many ways, for both the impacts on research – in terms of withholding data and falsifying data and avoiding the system to avoid giving in data – and the lives it will touch.
What education has to learn from health is whether it will permit the uses by ‘others’ outside education to jeopardise the collection of school data intended in the best interests of children, not the system. In England it must start to analyse what is needed vs wanted. What is necessary and proportionate and justifies maintaining named data indefinitely, exposed to changing scope.
In health, the most recent Caldicott review suggests scope change by design – that is a red line for many: “For that reason the Review recommends that, in due course, the opt-out should not apply to all flows of information into the HSCIC. This requires careful consideration with the primary care community.”
The community spoke out already, and strongly in Spring and Summer 2014 that there must be an absolute right to confidentiality to protect patients’ trust in the system. Scope that ‘sounds’ like it might sneakily change in future, will be a death knell to public interest research, because repeated trust erosion will be fatal.
Laws change to allow scope change without informing people whose data are being used for different purposes
Regulators must be seen to be trusted, if the data they regulate is to be trustworthy. Laws and regulators that plan scope for the future watering down of public protection, water down public trust from today. Unethical policy and practice, will not be saved by pseudo-data-science ethics.
Will those decisions in private political rooms be worth the public cost to research, to policy, and to the lives it will ultimately affect?
What happens when the ethical black holes in policy, lawmaking and practice collide?
At the last UK HealthCamp towards the end of the day, when we discussed the hard things, the topic inevitably moved swiftly to consent, to building big databases, public perception, and why anyone would think there is potential for abuse, when clearly the intended use is good.
The answer came back from one of the participants, “OK now it’s the time to say. Because, Nazis.” Meaning, let’s learn from history.
Given the state of UK politics, Go Home van policies, restaurant raids, the possibility of Trump getting access to UK sensitive data of all sorts from across the Atlantic, given recent policy effects on the rights of the disabled and others, I wonder if we would hear the gentle laughter in the room in answer to the same question today.
With what is reported as Whitehall’s digital leadership sharp change today, the future of digital in government services and policy and lawmaking does indeed seem to be more “about blood and war and power,” than “evidence and argument and policy“.
The concept of ethics in datasharing using public data in the UK is far from becoming obsolete. It has yet to begin.
We have ethical black holes in big data research, in big data policy, and big data practices in England. The conflicts between public interest research and government uses of population wide datasets, how the public perceive the use of our data and how they are used, gaps and tensions in policy and practice are there.
We are simply waiting for the Big Bang. Whether it will be creative, or destructive we are yet to feel.
image credit: LIGO – graphical visualisation of black holes on the discovery of gravitational waves