What is means to be human is going to be different. That was the last word of a panel of four excellent speakers, and the sparkling wit and charm of chair Timandra Harkness, at tonight’s Turing Institute event, hosted at the British Library, on the future of data.
The first speaker, Bernie Hogan, of the Oxford Internet Institute, spoke of Facebook’s emotion experiment, and the challenges of commercial companies ownership and concentrations of knowledge, as well as their decisions controlling what content you get to see.
He also explained simply what an API is in human terms. Like a plug in a socket and instead of electricity, you get a flow of data, but the data controller can control which data can come out of the socket.
And he brilliantly brought in a thought what would it mean to be able to go back in time to the Nuremberg trials, and regulate not only medical ethics, but the data ethics of indirect and computational use of information. How would it affect today’s thinking on AI and machine learning and where we are now?
“Available does not mean accessible, transparent does not mean accountable”
Charles from the Bureau of Investigative Journalism, who had also worked for Trinity Mirror using data analytics, introduced some of the issues that large datasets have for the public.
People rarely have the means to do any analytics well.
Even if open data are available, they are not necessarily accessible due to the volume of data to access, and constraints of common software (such as excel) and time constraints.
Without the facts they cannot go see a [parliamentary] representative or community group to try and solve the problem.
Local journalists often have targets for the number of stories they need to write, and target number of Internet views/hits to meet.
Putting data out there is only transparency, but not accountability if we cannot turn information into knowledge that can benefit the public.
“Trust, is like personal privacy. Once lost, it is very hard to restore.”
Jonathan Bamford, Head of Parliamentary and Government Affairs at the ICO, took us back to why we need to control data at all. Democracy. Fairness. The balance of people’s rights, like privacy, and Freedom-of-Information, and the power of data holders. The awareness that power of authorities and companies will affect the lives of ordinary citizens. And he said that even early on there was a feeling there was a need to regulate who knows what about us.
The third generation of Data Protection law he said, is now more important than ever to manage the whole new era of technology and use of data that did not exist when previous laws were made.
But, he said, the principles stand true today. Don’t be unfair. Use data for the purposes people expect. Security of data matters. As do rights to see the data people hold about us. Make sure data are relevant, accurate, necessary and kept for a sensible amount of time.
And even if we think that technology is changing, he argued, the principles will stand, and organisations need to consider these principles before they do things, considering privacy as a fundamental human right by default, and data protection by design.
After all, we should remember the Information Commissioner herself recently said,
“privacy does not have to be the price we pay for innovation. The two can sit side by side. They must sit side by side.
It’s not always an easy partnership and, like most relationships, a lot of energy and effort is needed to make it work. But that’s what the law requires and it’s what the public expects.”
“We must not forget, evil people want to do bad things. AI needs to be audited.”
Joanna J. Bryson was brilliant her multifaceted talk, summing up how data will affect our lives. She explained how implicit biases work, and how we reason, make decisions and showed up how we think in some ways in Internet searches. She showed in practical ways, how machine learning is shaping our future in ways we cannot see. And she said, firms asserting that doing these things fairly and openly and that regulation no longer fits new tech, “is just hoo-hah”.
She talked about the exciting possibilities and good use of data, but that , “we must not forget, evil people want to do bad things. AI needs to be audited.” She summed up, we will use data to predict ourselves. And she said:
“What is means to be human is going to be different.”
That is perhaps the crux of this debate. How do data and machine learning and its mining of massive datasets, and uses for ‘prediction’, affect us as individual human beings, and our humanity?
The last audience question addressed inequality. Solutions like transparency, subject access, accountability, and understanding biases and how we are used, will never be accessible to all. It needs a far greater digital understanding across all levels of society. How can society both benefit from and be involved in the future of data in public life? The conclusion was made, that we need more faith in public institutions working for people at scale.
But what happens when those institutions let people down, at scale?
The debate was less about the Future of Data in Public Life, and much more about how big data affects our personal lives. Most of the discussion was around how we understand the use of our personal information by companies and institutions, and how will we ensure democracy, fairness and equality in future.
The question went unanswered from an audience member, how do we protect ourselves from the harms we cannot see, or protect the most vulnerable who are least able to protect themselves?
“How can we future proof data protection legislation and make sure it keeps up with innovation?”
That audience question is timely given the new Data Protection Bill. But what legislation means in practice, I am learning rapidly, can be very different from what is in the written down in law.
One additional tool in data privacy and rights legislation is up for discussion, right now, in the UK. If it matters to you, take action.
NGOs could be enabled to make complaints on behalf of the public under article 80 of the General Data Protection Regulation (GDPR). However, the government has excluded that right from the draft UK Data Protection Bill launched last week.
“Paragraph 53 omits from Article 80, representation of data subjects, where provided for by Member State law” from paragraph 1 and paragraph 2,” [Data Protection Bill Explanatory notes, paragraph 681 p84/112]. 80 (2) gives members states the option to provide for NGOs to take action independently on behalf of many people that may have been affected.
If you want that right, a right others will be getting in other countries in the EU, then take action. Call your MP or write to them. Ask for Article 80, the right to representation, in UK law. We need to ensure that our human rights continue to be enacted and enforceable to the maximum, if, “what is means to be human is going to be different.”
For the Future of Data, has never been more personal.
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.
Future thinking
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.
Why?
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.
That public discussion is long overdue. If open principles on IoT devices mean that the signed-up companies differentiate themselves by becoming market leaders in transparency, it will be a great thing. Companies need to offer full disclosure of data use in any privacy notices in clear, plain language under GDPR anyway, but to go beyond that, and offer customers fair presentation of both risks and customer benefits, will not only be a point-of-sales benefit, but potentially improve digital literacy in customers too.
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.
Are there tools designed by others, like Projects by If licenses, and ways this can be done, that you’re not even considering yet?
What if you don’t do it?
“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.”
Further reading: Networks of Control – A Report on Corporate Surveillance, Digital Tracking, Big Data & Privacy by Wolfie Christl and Sarah Spiekermann
Time and again, thinking and discussion about these topics is siloed. At the Turing Institute, the Royal Society, the ADRN and EPSRC, in government departments, discussions on data, or within education practitioner, and public circles — we are all having similar discussions about data and ethics, but with little ownership and no goals for future outcomes. If government doesn’t get it, or have time for it, or policy lacks ethics by design, is it in the public interest for private companies, Google et al., to offer a fait accompli?
There is lots of talking about Machine Learning (ML), Artificial Intelligence (AI) and ethics. But what is being done to ensure that real values — respect for rights, human dignity, and autonomy — are built into practice in the public services delivery?
In most recent data policy it is entirely absent. The Digital Economy Act s33 risks enabling, through removal of inter and intra-departmental data protections, an unprecedented expansion of public data transfers, with “untrammelled powers”. Powers without codes of practice, promised over a year ago. That has fall out for the trustworthiness of legislative process, and data practices across public services.
Predictive analytics is growing but poorly understood in the public and public sector.
There is already dependence on computers in aspects of public sector work. Its interactions with others in sensitive situations demands better knowledge of how systems operate and can be wrong. Debt recovery, and social care to take two known examples.
Risk averse, staff appear to choose not to question the outcome of ‘algorithmic decision making’ or do not have the ability to do so. There is reportedly no analysis training for practitioners, to understand the basis or bias of conclusions. This has the potential that instead of making us more informed, decision-making by machine makes us humans less clever.
What does it do to professionals, if they feel therefore less empowered? When is that a good thing if it overrides discriminatory human decisions? How can we tell the difference and balance these risks if we don’t understand or feel able to challenge them?
In education, what is it doing to children whose attainment is profiled, predicted, and acted on to target extra or less focus from school staff, who have no ML training and without informed consent of pupils or parents?
If authorities use data in ways the public do not expect, such as to ID homes of multiple occupancy without informed consent, they will fail the future to deliver uses for good. The ‘public interest’, ‘user need,’ and ethics can come into conflict according to your point of view. The public and data protection law and ethics object to harms from use of data. This type of application has potential to be mind-blowingly invasive and reveal all sorts of other findings.
Widely informed thinking must be made into meaningful public policy for the greatest public good
Our politicians are caught up in the General Election and buried in Brexit.
Meanwhile, the commercial companies taking AI first rights to capitalise on existing commercial advantage could potentially strip public assets, use up our personal data and public trust, and leave the public with little public good. We are already used by global data players, and by machine-based learning companies, without our knowledge or consent. That knowledge can be used to profit business models, that pay little tax into the public purse.
There are valid macro economic arguments about whether private spend and investment are preferable compared with a state’s ability to do the same. But these companies make more than enough to do it all. Does it signal a failure to a commitment to the wider community; not paying just amounts of taxes, is it a red flag to a company’s commitment to public good?
What that public good should look like, depends on who is invited to participate in the room, and not to tick boxes, but to think and to build.
The Royal Society’s Report on AI and Machine Learning published on April 25, showed a working group of 14 participants, including two Google DeepMind representatives, one from Amazon, private equity investors, and academics from cognitive science and genetics backgrounds.
If we are going to form objective policies the inputs that form the basis for them must be informed, but must also be well balanced, and be seen to be balanced. Not as an add on, but be in the same room.
As Natasha Lomas in TechCrunch noted, “Public opinion is understandably a big preoccupation for the report authors — unsurprisingly so, given that a technology that potentially erodes people’s privacy and impacts their jobs risks being drastically unpopular.”
“The report also calls on researchers to consider the wider impact of their work and to receive training in recognising the ethical implications.”
What are those ethical implications? Who decides which matter most? How do we eliminate recognised discriminatory bias? What should data be used for and AI be working on at all? Who is it going to benefit? What questions are we not asking? Why are young people left out of this debate?
Who decides what the public should or should not know?
AI and ML depend on data. Data is often talked about as a panacea to problems of better working together. But data alone does not make people better informed. In the same way that they fail, if they don’t feel it is their job to pick up the fax. A fundamental building block of our future public and private prosperity is understanding data and how we, and the AI, interact. What is data telling us and how do we interpret it, and know it is accurate?
How and where will we start to educate young people about data and ML, if not about their own and use by government and commercial companies?
The whole of Chapter 5 in the report is very good as a starting point for policy makers who have not yet engaged in the area. Privacy while summed up too short in conclusions, is scattered throughout.
Blind spots remain, however.
Over willingness to accommodate existing big private players as their expertise leads design, development and a desire to ‘re-write regulation’.
Slowness to react to needed regulation in the public sector (caught up in Brexit) while commercial drivers and technology change forge ahead
‘How do we develop technology that benefits everyone’ must not only think UK, but global South, especially in the bias in how AI is being to taught, and broad socio-economic barriers in application
Predictive analytics and professional application = unwillingness to question the computer result. In children’s social care this is already having a damaging upturn in the family courts (S31)
Data and technology knowledge and ethics training, must be embedded across the public sector, not only post grad students in machine learning.
Young people are left out of discussions which, after all, are about their future. [They might have some of the best ideas, we miss at our peril.]
There is no time to waste
Children and young people have the most to lose while their education, skills, jobs market, economy, culture, care, and society goes through a series of gradual but seismic shift in purpose, culture, and acceptance before finding new norms post-Brexit. They will also gain the most if the foundations are right. One of these must be getting age verification right in GDPR, not allowing it to enable a massive data grab of child-parent privacy.
Although the RS Report considers young people in the context of a future workforce who need skills training, they are otherwise left out of this report.
“The next curriculum reform needs to consider the educational needs of young people through the lens of the implications of machine learning and associated technologies for the future of work.”
Yes it does, but it must give young people and the implications of ML broader consideration for their future, than classroom or workplace.
We are not yet talking about the effects of teaching technology to learn, and its effect on public services and interactions with the public. Questions that Sam Smith asked in Shadow of the smart machine: Will machine learning end?
At the end of this Information Age we are at a point when machine learning, AI and biotechnology are potentially life enhancing or could have catastrophic effects, if indeed “AI will cause people ‘more pain than happiness” as described by Alibaba’s founder Jack Ma.
The conflict between commercial profit and public good, what commercial companies say they will do and actually do, and fears and assurances over predicted outcomes is personified in the debate between Demis Hassabis, co-founder of DeepMind Technologies, (a London-based machine learning AI startup), and Elon Musk, discussing the perils of artificial intelligence.
Vanity Fair reported that, “Elon Musk began warning about the possibility of A.I. running amok three years ago. It probably hadn’t eased his mind when one of Hassabis’s partners in DeepMind, Shane Legg, stated flatly, “I think human extinction will probably occur, and technology will likely play a part in this.””
Musk was of the opinion that A.I. was probably humanity’s “biggest existential threat.”
We are not yet joining up multi disciplinary and cross sector discussions of threats and opportunities
Jobs, shift in needed skill sets for education, how we think, interact, value each other, accept or reject ownership and power models; and later, from the technology itself. We are not yet talking conversely, the opportunities that the seismic shifts offer in real terms. Or how and why to accept or reject or regulate them.
Where private companies are taking over personal data given in trust to public services, it is reckless for the future of public interest research to assume there is no public objection. How can we object, if not asked? How can children make an informed choice? How will public interest be assured to be put ahead of private profit? If it is intended on balance to be all about altruism from these global giants, then they must be open and accountable.
Private companies are shaping how and where we find machine learning and AI gathering data about our behaviours in our homes and public spaces.
SPACE10, an innovation hub for IKEA is currently running a survey on how the public perceives and “wants their AI to look, be, and act”, with an eye on building AI into their products, for us to bring flat-pack into our houses.
As the surveillance technology built into the Things in our homes attached to the Internet becomes more integral to daily life, authorities are now using it to gather evidence in investigations; from mobile phones, laptops, social media, smart speakers, and games. The IoT so far seems less about the benefits of collaboration, and all about the behavioural data it collects and uses to target us to sell us more things. Our behaviours tell much more than how we act. They show how we think inside the private space of our minds.
Do you want Google to know how you think and have control over that? The companies of the world that have access to massive amounts of data, and are using that data to now teach AI how to ‘think’. What is AI learning? And how much should the State see or know about how you think, or try to predict it?
Who cares, wins?
It is not overstated to say society and future public good of public services, depends on getting any co-dependencies right. As I wrote in the time of care.data, the economic value of data, personal rights and the public interest are not opposed to one another, but have synergies and co-dependency. One player getting it wrong, can create harm for all. Government must start to care about this, beyond the side effects of saving political embarrassment.
Without joining up all aspects, we cannot limit harms and make the most of benefits. There is nuance and unknowns. There is opaque decision making and secrecy, packaged in the wording of commercial sensitivity and behind it, people who can be brilliant but at the end of the day, are also, human, with all our strengths and weaknesses.
And we can get this right, if data practices get better, with joined up efforts.
Our future society, as our present, is based on webs of trust, on our social networks on- and offline, that enable business, our education, our cultural, and our interactions. Children must trust they will not be used by systems. We must build trustworthy systems that enable future digital integrity.
The immediate harm that comes from blind trust in AI companies is not their AI, but the hidden powers that commercial companies have to nudge public and policy maker behaviours and acceptance, towards private gain. Their ability and opportunity to influence regulation and future direction outweighs most others. But lack of transparency about their profit motives is concerning. Carefully staged public engagement is not real engagement but a fig leaf to show ‘the public say yes’.
The unwillingness by Google DeepMind, when asked at their public engagement event, to discuss their past use of NHS patient data, or the profit model plan or their terms of NHS deals with London hospitals, should be a warning that these questions need answers and accountability urgently.
Companies that have already extracted and benefited from personal data in the public sector, have already made private profit. They and their machines have learned for their future business product development.
A transparent accountable future for all players, private and public, using public data is a necessary requirement for both the public good and private profit. It is not acceptable for departments to hide their practices, just as it is unacceptable if firms refuse algorithmic transparency.
“Rebooting antitrust for the information age will not be easy. It will entail new risks: more data sharing, for instance, could threaten privacy. But if governments don’t want a data economy dominated by a few giants, they will need to act soon.” [The Economist, May 6]
If the State creates a single data source of truth, or private Giant tech thinks it can side-step regulation and gets it wrong, their practices screw up public trust. It harms public interest research, and with it our future public good.
But will they care?
If we care, then across public and private sectors, we must cherish shared values and better collaboration. Embed ethical human values into development, design and policy. Ensure transparency of where, how, who and why my personal data has gone.
We must ensure that as the future becomes “smarter”, we educate ourselves and our children to stay intelligent about how we use data and AI.
We must start today, knowing how we are used by both machines, and man.
Is Education preparing us for the jobs of the future?
The panel talked about changing social and political realities. We considered the effects on employment. We began discussion how those changes should feed into education policy and practice today. It is discussion that should be had by the public. So far, almost a year after the Referendum, the UK government is yet to say what post-Brexit Britain might look like. Without a vision, any mandate for the unknown, if voted for on June 9th, will be meaningless.
What was talked about and what should be a public debate:
What jobs will be needed in the future?
Post Brexit, what skills will we need in the UK?
How can the education system adapt and improve to help future generations develop skills in this ever changing landscape?
How do we ensure women [and anyone else] are not left behind?
Brexit is the biggest change management project I may never see.
As the State continues making and remaking laws, reforming education, and starts exiting the EU, all in parallel, technology and commercial companies won’t wait to see what the post-Brexit Britain will look like. In our state’s absence of vision, companies are shaping policy and ‘re-writing’ their own version of regulations. What implications could this have for long term public good?
What will be needed in the UK future?
A couple of sentences from Alan Penn have stuck with me all week. Loosely quoted, we’re seeing cultural identity shift across the country, due to the change of our available employment types. Traditional industries once ran in a family, with a strong sense of heritage. New jobs don’t offer that. It leaves a gap we cannot fill with “I’m a call centre worker”. And this change is unevenly felt.
There is no tangible public plan in the Digital Strategy for dealing with that change in the coming 10 to 20 years employment market and what it means tied into education. It matters when many believe, as do these authors in American Scientific, “around half of today’s jobs will be threatened by algorithms. 40% of today’s top 500 companies will have vanished in a decade.”
So what needs thought?
Analysis of what that regional jobs market might look like, should be a public part of the Brexit debate and these elections →
We need to see those goals, to ensure policy can be planned for education and benchmark its progress towards achieving its aims
Brexit and technology will disproportionately affect different segments of the jobs market and therefore the population by age, by region, by socio-economic factors →
Education policy must therefore address aspects of skills looking to the future towards employment in that new environment, so that we make the most of opportunities, and mitigate the harms.
Brexit and technology will disproportionately affect communities → What will be done to prevent social collapse in regions hardest hit by change?
Where are we starting from today?
Before we can understand the impact of change, we need to understand what the present looks like. I cannot find a map of what the English education system looks like. No one I ask seems to have one or have a firm grasp across the sector, of how and where all the parts of England’s education system fit together, or their oversight and accountability. Everyone has an idea, but no one can join the dots. If you have, please let me know.
Nothing is constant in education like change; in laws, policy and its effects in practice, so I shall start there.
1. Legislation
In retrospect it was a fatal flaw, missed in post-Referendum battles of who wrote what on the side of a bus, that no one did an assessment of education [and indeed other] ‘legislation in progress’. There should have been recommendations made on scrapping inappropriate government bills in entirety or in parts. New laws are now being enacted, rushed through in wash up, that are geared to our old status quo, and we risk basing policy only on what we know from the past, because on that, we have data.
In the timeframe that Brexit will become tangible, we will feel the effects of the greatest shake up of Higher Education in 25 years. Parts of the Higher Education and Research Act, and Technical and Further Education Act are unsuited to the new order post-Brexit.
What it will do: The new HE law encourages competition between institutions, and the TFE Act centred in large part on how to manage insolvency.
What it should do: Policy needs to promote open, collaborative networks if within a now reduced research and academic circle, scholarly communities are to thrive.
Legislation has recently not only meant restructure, but repurposing of what education [authorities] is expected to offer.
A new Statutory Instrument — The School and Early Years Finance (England) Regulations 2017 — makes music, arts and playgrounds items; ‘That may be removed from maintained schools’ budget shares’.
How will this withdrawal of provision affect skills starting from the Early Years throughout young people’s education?
2. Policy
Education policy if it continues along the grammar school path, will divide communities into ‘passed’ and the ‘unselected’. A side effect of selective schooling— a feature or a bug dependent on your point of view — is socio-economic engineering. It builds class walls in the classroom, while others, like Fabian Women, say we should be breaking through glass ceilings. Current policy in a wider sense, is creating an environment that is hostile to human integration. It creates division across the entire education system for children aged 2–19.
The curriculum is narrowing, according to staff I’ve spoken to recently, as a result of measurement focus on Progress 8, and due to funding constraints.
What effect will this have on analysis of knowledge, discernment, how to assess when computers have made a mistake or supplied misinformation, and how to apply wisdom? Skills that today still distinguish human from machine learning.
What narrowing the curriculum does: Students have fewer opportunities to discover their skill set, limiting opportunities for developing social skills and cultural development, and their development as rounded, happy, human beings.
What we could do: Promote long term love of learning in-and-outside school and in communities. Reinvest in the arts, music and play, which support mental and physical health and create a culture in which people like to live as well as work. Library and community centres funding must be re-prioritised, ensuring inclusion and provision outside school for all abilities.
Austerity builds barriers of access to opportunity and skills. Children who cannot afford to, are excluded from extra curricular classes. We already divide our children through private and state education, into those who have better facilities and funding to enjoy and explore a fully rounded education, and those whose funding will not stretch much beyond the bare curriculum. For SEN children, that has already been stripped back further.
Existing barriers are likely to become entrenched in twenty years. What does it do to society, if we are divided in our communities by money, or gender, or race, and feel disempowered as individuals? Are we less responsible for our actions if there’s nothing we can do about it? If others have more money, more power than us, others have more control over our lives, and “no matter what we do, we won’t pass the 11 plus”?
Without joined-up scrutiny of these policy effects across the board, we risk embedding these barriers into future planning. Today’s data are used to train “how the system should work”. If current data are what applicants in 5 years will base future expectations on, will their decisions be objective and will in-built bias be transparent?
3. Sociological effects of legislation.
It’s not only institutions that will lose autonomy in the Higher Education and Research Act.
At present, the risk to the autonomy of science and research is theoretical — but the implications for academic freedom are troubling. [Nature 538, 5 (06 October 2016)]
The Secretary of State for Education now also has new Powers of Information about individual applicants and students. Combined with the Digital Economy Act, the law can ride roughshod over students’ autonomy and consent choices. Today they can opt out of UCAS automatically sharing their personal data with the Student Loans Company for example. Thanks to these new powers, and combined with the Digital Economy Act, that’s gone.
The Act further includes the intention to make institutions release more data about course intake and results under the banner of ‘transparency’. Part of the aim is indisputably positive, to expose discrimination and inequality of all kinds. It also aims to make the £ cost-benefit return “clearer” to applicants — by showing what exams you need to get in, what you come out with, and then by joining all that personal data to the longitudinal school record, tax and welfare data, you see what the return is on your student loan. The government can also then see what your education ‘cost or benefit’ the Treasury. It is all of course much more nuanced than that, but that’s the very simplified gist.
This ‘destinations data’ is going to be a dataset we hear ever more about and has the potential to influence education policy from age 2.
Aside from the issue of personal data disclosiveness when published by institutions — we already know of individuals who could spot themselves in a current published dataset — I worry that this direction using data for ‘advice’ is unhelpful. What if we’re looking at the wrong data upon which to base future decisions? The past doesn’t take account of Brexit or enable applicants to do so.
Researchers [and applicants, the year before they apply or start a course] will be looking at what *was* — predicted and achieved qualifying grades, make up of the class, course results, first job earnings — what was for other people, is at least 5 years old by the time it’s looked at it. Five years is a long time out of date.
4. Change
Teachers and schools have long since reached saturation point in the last 5 years to handle change. Reform has been drastic, in structures, curriculum, and ongoing in funding. There is no ongoing teacher training, and lack of CPD take up, is exacerbated by underfunding.
Teachers are fed up with change. They want stability. But contrary to the current “strong and stable” message, reality is that ahead we will get anything but, and must instead manage change if we are to thrive. Politically, we will see backlash when ‘stable’ is undeliverable.
But Teaching has not seen ‘stable’ for some time. Teachers are asking for fewer children, and more cash in the classroom. Unions talk of a focus on learning, not testing, to drive school standards. If the planned restructuring of funding happens, how will it affect staff retention?
We know schools are already reducing staff. How will this affect employment, adult and children’s skill development, their ambition, and society and economy?
Where could legislation and policy look ahead?
What are the big Brexit targets and barriers and when do we expect them?
How is the fall out from underfunding and reduction of teaching staff expected to affect skills provision?
State education policy is increasingly hands-off. What is the incentive for local schools or MATs to look much beyond the short term?
How do local decisions ensure education is preparing their community, but also considering society, health and (elderly) social care, Post-Brexit readiness and women’s economic empowerment?
How does our ageing population shift in the same time frame?
How can the education system adapt?
We need to talk more about other changes in the system in parallel to Brexit; join the dots, plus the potential positive and harmful effects of technology.
Gender here too plays a role, as does mitigating discrimination of all kinds, confirmation bias, and even in the tech itself, whether AI for example, is going to be better than us at decision-making, if we teach AI to be biased.
Dr Lisa Maria Mueller talked about the effects and influence of age, setting and language factors on what skills we will need, and employment. While there are certain skills sets that computers are and will be better at than people, she argued society also needs to continue to cultivate human skills in cultural sensitivities, empathy, and understanding. We all nodded. But how?
To develop all these human skills is going to take investment. Investment in the humans that teach us. Bennie Kara, Assistant Headteacher in London, spoke about school cuts and how they will affect children’s futures.
The future of England’s education must be geared to a world in which knowledge and facts are ubiquitous, and readily available online than at any other time. And access to learning must be inclusive. That means including SEN and low income families, the unskilled, everyone. As we become more internationally remote, we must put safeguards in place if we to support thriving communities.
Policy and legislation must also preserve and respect human dignity in a changing work environment, and review not only what work is on offer, but *how*; the kinds of contracts and jobs available.
Where might practice need to adapt now?
Re-consider curriculum content with its focus on facts. Will success risk being measured based on out of date knowledge, and a measure of recall? Are these skills in growing or dwindling need?
Knowledge focus must place value on analysis, discernment, and application of facts that computers will learn and recall better than us. Much of that learning happens outside school.
Opportunities have been cut, together with funding. We need communities brought back together, if they are not to collapse. Funding centres of local learning, restoring libraries and community centres will be essential to local skill development.
What is missing?
Although Sarah Waite spoke (in a suitably Purdah appropriate tone), about the importance of basic skills in the future labour market we didn’t get to talking about education preparing us for the lack of jobs of the future and what that changed labour market will look like.
What skills will *not* be needed? Who decides? If left to companies’ sponsor led steer in academies, what effects will we see in society?
Discussions of a future education model and technology seem to share a common theme: people seem reduced in making autonomous choices. But they share no positive vision.
Technology should empower us, but it seems to empower the State and diminish citizens’ autonomy in many of today’s policies, and in future scenarios especially around the use of personal data and Digital Economy.
Technology should enable greater collaboration, but current tech in education policy is focused too little on use on children’s own terms, and too heavily on top-down monitoring: of scoring, screen time, search terms. Further restrictions by Age Verification are coming, and may access and reduce participation in online services if not done well.
Infrastructure weakness is letting down the skill training: University Technical Colleges (UTCs) are not popular and failing to fill places. There is lack of an overarching area wide strategic plan for pupils in which UTCS play a part. Local Authorities played an important part in regional planning which needs restored to ensure joined up local thinking.
How do we ensure women are not left behind?
The final question of the evening asked how women will be affected by Brexit and changing job market. Part of the risks overall, the panel concluded, is related to [lack of] equal-pay. But where are the assessments of the gendered effects in the UK of:
community structural change and intra-family support and effect on demand for social care
tech solutions in response to lack of human interaction and staffing shortages including robots in the home and telecare
the disproportionate drop out of work, due to unpaid care roles, and difficulty getting back in after a break.
the roles and types of work likely to be most affected or replaced by machine learning and robots
and how will women be empowered or not socially by technology?
We quickly need in education to respond to the known data where women are already being left behind now. The attrition rate for example in teaching in England after two-three years is poor, and getting worse. What will government do to keep teachers teaching? Their value as role models is not captured in pupils’ exams results based entirely on knowledge transfer.
Our GCSEs this year go back to pure exam based testing, and remove applied coursework marking, and is likely to see lower attainment for girls than boys, say practitioners. Likely to leave girls behind at an earlier age.
“There is compelling evidence to suggest that girls in particular may be affected by the changes — as research suggests that boys perform more confidently when assessed by exams alone.”
Jennifer Tuckett spoke about what fairness might look like for female education in the Creative Industries. From school-leaver to returning mother, and retraining older women, appreciating the effects of gender in education is intrinsic to the future jobs market.
We also need broader public understanding of the loop of the impacts of technology, on the process and delivery of teaching itself, and as school management becomes increasingly important and is male dominated, how will changes in teaching affect women disproportionately? Fact delivery and testing can be done by machine, and supports current policy direction, but can a computer create a love of learning and teach humans how to think?
“There is a opportunity for a holistic synthesis of research into gender, the effect of tech on the workplace, the effect of technology on care roles, risks and opportunities.”
Delivering education to ensure women are not left behind, includes avoiding women going into education as teenagers now, to be led down routes without thinking of what they want and need in future. Regardless of work.
Education must adapt to changed employment markets, and the social and community effects of Brexit. If it does not, barriers will become embedded. Geographical, economic, language, familial, skills, and social exclusion.
In short
In summary, what is the government’s Brexit vision? We must know what they see five, 10, and for 25 years ahead, set against understanding the landscape as-is, in order to peg other policy to it.
With this foundation, what we know and what we estimate we don’t know yet can be planned for.
Once we know where we are going in policy, we can do a fit-gap to map how to get people there.
Estimate which skills gaps need filled and which do not. Where will change be hardest?
Change is not new. But there is current potential for massive long term economic and social lasting damage to our young people today. Government is hindered by short term political thinking, but it has a long-term responsibility to ensure children are not mis-educated because policy and the future environment are not aligned.
We deserve public, transparent, informed debate to plan our lives.
We enter the unknown of the education triangle at our peril; Brexit, underfunding, divisive structural policy, for the next ten years and beyond, without appropriate adjustment to pre-Brexit legislation and policy plans for the new world order.
The combined negative effects on employment at scale and at pace must be assessed with urgency, not by big Tech who will profit, but with an eye on future fairness, and public economic and social good. Academy sponsors, decision makers in curriculum choices, schools with limited funding, have no incentives to look to the wider world.
If we’re going to go it alone, we’d be better be robust as a society, and that can’t be just some of us, and can’t only be about skills as seen as having an tangible output.
All this discussion is framed by the premise that education’s aim is to prepare a future workforce for work, and that it is sustainable.
Policy is increasingly based on work that is measured by economic output. We must not leave out or behind those who do not, or cannot, or whose work is unmeasured yet contributes to the world.
‘The only future worth building includes everyone,’ said the Pope in a recent TedTalk.
What kind of future do you want to see yourself living in? Will we all work or will there be universal basic income? What will happen on housing, an ageing population, air pollution, prisons, free movement, migration, and health? What will keep communities together as their known world in employment, and family life, and support collapse? How will education enable children to discover their talents and passions?
Human beings are more than what we do. The sense of a country of who we are and what we stand for is about more than our employment or what we earn. And we cannot live on slogans alone.
Who do we think we in the UK will be after Brexit, needs real and substantial answers. What are we going to *do* and *be* in the world?
Without this vision, any mandate as voted for on June 9th, will be made in the dark and open to future objection writ large. ‘We’ must be inclusive based on a consensus, not simply a ‘mandate’.
Only with clear vision for all these facets fitting together in a model of how we will grow in all senses, will we be able to answer the question, is education preparing us [all] for the jobs of the future?
More than this, we must ask if education is preparing people for the lack of jobs, for changing relationships in our communities, with each other, and with machines.
Change is coming, Brexit or not. But Brexit has exacerbated the potential to miss opportunities, embed barriers, and see negative side-effects from changes already underway in employment, in an accelerated timeframe.
If our education policy today is not gearing up to that change, we must.
In preparation for The General Data Protection Regulation (GDPR) there must be an active UK decision about policy in the coming months for children and the Internet – provision of ‘Information Society Services’. The age of consent for online content aimed at children from May 25, 2018 will be 16 by default unless UK law is made to lower it.
Age verification for online information services in the GDPR, will mean capturing parent-child relationships. This could mean a parent’s email or credit card unless there are other choices made. What will that mean for access to services for children and to privacy? It is likely to offer companies an opportunity for a data grab, and mean privacy loss for the public, as more data about family relationships will be created and collected than the content provider would get otherwise.
Our interactions create a blended identity of online and offline attributes which I suggested in a previous post, create synthesised versions of our selves raises questions on data privacy and security.
The goal may be to protect the physical child. The outcome will mean it simultaneously expose children and parents to risks that we would not otherwise be put through increased personal data collection. By increasing the data collected, it increases the associated risks of loss, theft, and harm to identity integrity. How will legislation balance these risks and rights to participation?
The UK government has various work in progress before then, that could address these questions:
As Sonia Livingstone wrote in the post on the LSE media blog about what to expect from the GDPR and its online challenges for children:
“Now the UK, along with other Member States, has until May 2018 to get its house in order”.
What will that order look like?
The Digital Strategy and Ed Tech
The Digital Strategy commits to changes in National Pupil Data management. That is, changes in the handling and secondary uses of data collected from pupils in the school census, like using it for national research and planning.
Access to NPD via the ONS VML would mean safe data use, in safe settings, by safe (trained and accredited) users.
Sensitive data — it remains to be seen how DfE intends to interpret ‘sensitive’ and whether that is the DPA1998 term or lay term meaning ‘identifying’ as it should — will no longer be seen by users for secondary uses outside safe settings.
However, a grey area on privacy and security remains in the “Data Exchange” which will enable EdTech products to “talk to each other”.
The aim of changes in data access is to ensure that children’s data integrity and identity are secure. Let’s hope the intention that “at all times, the need to preserve appropriate privacy and security will remain paramount and will be non-negotiable” applies across all closed pupil data, and not only to that which may be made available via the VML.
This strategy is still far from clear or set in place.
The Digital Strategy and consumer data rights
The Digital Strategy commits under the heading of “Unlocking the power of data in the UK economy and improving public confidence in its use” to the implementation of the General Data Protection Regulation by May 2018. The Strategy frames this as a business issue, labelling data as “a global commodity” and as such, its handling is framed solely as a requirements needed to ensure “that our businesses can continue to compete and communicate effectively around the world” and that adoption “will ensure a shared and higher standard of protection for consumers and their data.”
The GDPR as far as children goes, is far more about protection of children as people. It focuses on returning control over children’s own identity and being able to revoke control by others, rather than consumer rights.
That said, there are data rights issues which are also consumer issues and product safety failures posing real risk of harm.
Neither The Digital Economy Bill nor the Digital Strategy address these rights and security issues, particularly when posed by the Internet of Things with any meaningful effect.
In fact, the chapter Internet of Things and Smart Infrastructure [ 9/19] singularly miss out anything on security and safety:
“We want the UK to remain an international leader in R&D and adoption of IoT. We are funding research and innovation through the three year, £30 million IoT UK Programme.”
If it’s not scary enough for the public to think that their sex secrets and devices are hackable, perhaps it will kill public trust in connected devices more when they find strangers talking to their children through a baby monitor or toy. [BEUC campaign report on #Toyfail]
“The internet-connected toys ‘My Friend Cayla’ and ‘i-Que’ fail miserably when it comes to safeguarding basic consumer rights, security, and privacy. Both toys are sold widely in the EU.”
Digital skills and training in the strategy doesn’t touch on any form of change management plans for existing working sectors in which we expect to see machine learning and AI change the job market. This is something the digital and industrial strategy must be addressing hand in glove.
The tactics and training providers listed sound super, but there does not appear to be an aspirational strategy hidden between the lines.
The Digital Economy Bill and citizens’ data rights
While the rest of Europe in this legislation has recognised that a future thinking digital world without boundaries, needs future thinking on data protection and empowered citizens with better control of identity, the UK government appears intent on taking ours away.
To take only one example for children, the Digital Economy Bill in Cabinet Office led meetings was explicit about use for identifying and tracking individuals labelled under “Troubled Families” and interventions with them. Why, when consent is required to work directly with people, that consent is being ignored to access their information is baffling and in conflict with both the spirit and letter of GDPR. Students and Applicants will see their personal data sent to the Student Loans Company without their consent or knowledge. This overrides the current consent model in place at UCAS.
It is baffling that the government is pursuing the Digital Economy Bill data copying clauses relentlessly, that remove confidentiality by default, and will release our identities in birth, marriage and death data for third party use without consent through Chapter 2, the opening of the Civil Registry, without any safeguards in the bill.
Government has not only excluded important aspects of Parliamentary scrutiny in the bill, it is trying to introduce “almost untrammeled powers” (paragraph 21), that will “very significantly broaden the scope for the sharing of information” and “specified persons” which applies “whether the service provider concerned is in the public sector or is a charity or a commercial organisation” and non-specific purposes for which the information may be disclosed or used. [Reference: Scrutiny committee comments]
Future changes need future joined up thinking
While it is important to learn from the past, I worry that the effort some social scientists put into looking backwards, is not matched by enthusiasm to look ahead and making active recommendations for a better future.
Society appears to have its eyes wide shut to the risks of coercive control and nudge as research among academics and government departments moves in the direction of predictive data analysis.
Uses of administrative big data and publicly available social media data for example, in research and statistics, needs further new regulation in practice and policy but instead the Digital Economy Bill looks only at how more data can be got out of Department silos.
A certain intransigence about data sharing with researchers from government departments is understandable. What’s the incentive for DWP to release data showing its policy may kill people?
Westminster may fear it has more to lose from data releases and don’t seek out the political capital to be had from good news.
The ethics of data science are applied patchily at best in government, and inconsistently in academic expectations.
Some researchers have identified this but there seems little will to action:
“It will no longer be possible to assume that secondary data use is ethically unproblematic.”
Research and legislation alike seem hell bent on the low hanging fruit but miss out the really hard things. What meaningful benefit will it bring by spending millions of pounds on exploiting these personal data and opening our identities to risk just to find out whether X course means people are employed in Y tax bracket 5 years later, versus course Z where everyone ends up self employed artists? What ethics will be applied to the outcomes of those questions asked and why?
And while government is busy joining up children’s education data throughout their lifetimes from age 2 across school, FE, HE, into their HMRC and DWP interactions, there is no public plan in the Digital Strategy for the coming 10 to 20 years employment market, when many believe, as do these authors in American Scientific, “around half of today’s jobs will be threatened by algorithms. 40% of today’s top 500 companies will have vanished in a decade.”
What benefit will it have to know what was, or for the plans around workforce and digital skills list ad hoc tactics, but no strategy?
We must safeguard jobs and societal needs, but just teaching people to code is not a solution to a fundamental gap in what our purpose will be, and the place of people as a world-leading tech nation after Brexit. We are going to have fewer talented people from across the world staying on after completing academic studies, because they’re not coming at all.
There may be investment in A.I. but where is the investment in good data practices around automation and machine learning in the Digital Economy Bill?
To do this Digital Strategy well, we need joined up thinking.
Children should be able to use online services without being used and abused by them.
This article arrived on my Twitter timeline via a number of people. Doteveryone CEO Rachel Coldicutt summed up various strands of thought I started to hear hints of last month at #CPDP2017 in Brussels:
“As designers and engineers, we’ve contributed to a post-thought world. In 2017, it’s time to start making people think again.
“We need to find new ways of putting friction and thoughtfulness back into the products we make.” [Glanceable truthiness, 30.1.2017]
Let’s keep the human in discussions about technology, and people first in our products
All too often in technology and even privacy discussions, people have become ‘consumers’ and ‘customers’ instead of people.
The Digital Strategy may seek to unlock “the power of data in the UK economy” but policy and legislation must put equal if not more emphasis on “improving public confidence in its use” if that long term opportunity is to be achieved.
And in technology discussions about AI and algorithms we hear very little about people at all. Discussions I hear seem siloed instead into three camps: the academics, the designers and developers, the politicians and policy makers. And then comes the lowest circle, ‘the public’ and ‘society’.
It is therefore unsurprising that human rights have fallen down the ranking of importance in some areas of technology development.
In this post, I think out loud about what improving online safety for children in The Green Paper on Children’s Internet Safety means ahead of the General Data Protection Regulation in 2018. Children should be able to use online services without being used and abused by them. If this regulation and other UK Government policy and strategy are to be meaningful for children, I think we need to completely rethink the State approach to what data privacy means in the Internet of Things.
[listen on soundcloud]
Children in the Internet of Things
In 1979 Star Trek: The Motion Picture created a striking image of A.I. as Commander Decker merged with V’Ger and the artificial copy of Lieutenant Ilia, blending human and computer intelligence and creating an integrated, synthesised form of life.
Ten years later, Sir Tim Berners-Lee wrote his proposal and created the world wide web, designing the way for people to share and access knowledge with each other through networks of computers.
In the 90s my parents described using the Internet as spending time ‘on the computer’, and going online meant from a fixed phone point.
Today our wireless computers in our homes, pockets and school bags, have built-in added functionality to enable us to do other things with them at the same time; make toast, play a game, and make a phone call, and we live in the Internet of Things.
Although we talk about it as if it were an environment of inanimate appliances, it would be more accurate to think of the interconnected web of information that these things capture, create and share about our interactions 24/7, as vibrant snapshots of our lives, labelled with retrievable tags, and stored within the Internet.
Data about every moment of how and when we use an appliance, is captured at a rapid rate, or measured by smart meters, and shared within a network of computers. Computers that not only capture data but create, analyse and exchange new data about the people using them and how they interact with the appliance.
In this environment, children’s lives in the Internet of Things no longer involve a conscious choice to go online. Using the Internet is no longer about going online, but being online. The web knows us. In using the web, we become part of the web.
Our children, to the computers that gather their data, have simply become extensions of the things they use about which data is gathered and sold by the companies who make and sell the things. Things whose makers can even choose who uses them or not and how. In the Internet of things, children have become things of the Internet.
A child’s use of a smart hairbrush will become part of the company’s knowledge base how the hairbrush works. A child’s voice is captured and becomes part of the database for the development training of the doll or robot they play with.
Our biometrics, measurements of the unique physical parts of our identities, provides a further example of the recent offline-self physically incorporated into banking services. Over 1 million UK children’s biometrics are estimated to be used in school canteens and library services through, often compulsory, fingerprinting.
Our interactions create a blended identity of online and offline attributes.
The web has created synthesised versions of our selves.
I say synthesised not synthetic, because our online self is blended with our real self and ‘synthetic’ gives the impression of being less real. If you take my own children’s everyday life as an example, there is no ‘real’ life that is without a digital self. The two are inseparable. And we might have multiple versions.
Our synthesised self is not only about our interactions with appliances and what we do, but who we know and how we think based on how we take decisions.
Data is created and captured not only about how we live, but where we live. These online data can be further linked with data about our behaviours offline generated from trillions of sensors and physical network interactions with our portable devices. Our synthesised self is tracked from real life geolocations. In cities surrounded by sensors under pavements, in buildings, cameras, mapping and tracking everywhere we go, our behaviours are converted into data, and stored inside an overarching network of cloud computers so that our online lives take on life of their own.
Data about us, whether uniquely identifiable on its own or not, is created and collected actively and passively. Online site visits record IP Address and use linked platform log-ins that can even extract friends lists without consent or affirmative action from them.
Using a tool like Privacy Badger from EEF gives you some insight into how many sites create new data about online behaviour once that synthesised self logs in, then tracks your synthesised self across the Internet. How you move from page to page, with what referring and exit pages and URLs, what adverts you click on or ignore, platform types, number of clicks, cookies, invisible on page gifs and web beacons. Data that computers see, interpret and act on better than us.
Those synthesised identities are tracked online, just as we move about a shopping mall offline.
Sir Tim Berners-Lee said this week, there is a need to put “a fair level of data control back in the hands of people.” It is not a need but vital to our future flourishing, very survival even. Data control is not about protecting a list of information or facts about ourselves and our identity for its own sake, it is about choosing who can exert influence and control over our life, our choices, and future of democracy.
We get the service, the web gets our identity and our behaviours. And in what is in effect a hidden slave trade, they get access to use our synthesised selves in secret, and forever.
This grasp of what the Internet is, what the web is, is key to getting a rounded view of children’s online safety. Namely, we need to get away from the sole focus of online safeguarding as about children’s use of the web, and also look at how the web uses children.
Online services use children to:
mine, and exchange, repackage, and trade profile data, offline behavioural data (location, likes), and invisible Internet-use behavioural data (cookies, website analytics)
extend marketing influence in human decision-making earlier in life, even before children carry payment cards of their own,
enjoy the insights of parent-child relationships connected by an email account, sometimes a credit card, used as age verification or in online payments.
What are the risks?
Exploitation of identity and behavioural tracking not only puts our synthesised child at risk from exploitation, it puts our real life child’s future adult identity and data integrity at risk. If we cannot know who holds the keys to our digital identity, how can we trust that systems and services will be fair to us, not discriminate or defraud. Or not make errors that we cannot understand in order to correct?
Leaks, loss and hacks abound and manufacturers are slow to respond. Software that monitors children can also be used in coercive control. Organisations whose data are insecure, can be held to ransom. Children’s products should do what we expect them to and nothing more, there should be “no surprises” how data are used.
Companies tailor and target their marketing activity to those identity profiles. Our data is sold on in secret without consent to data brokers we never see, who in turn sell us on to others who monitor, track and target our synthesised selves every time we show up at their sites, in a never-ending cycle.
And from exploiting the knowledge of our synthesised self, decisions are made by companies, that target their audience, select which search results or adverts to show us, or hide, on which network sites, how often, to actively nudge our behaviours quite invisibly.
Nudge misuse is one of the greatest threats to our autonomy and with it democratic control of the society we live in. Who decides on the “choice architecture” that may shape another’s decisions and actions, and on what ethical basis? once asked these authors who now seem to want to be the decision makers.
Loss of identity is near impossible to reclaim. Our synthesised selves are sold into unending data slavery and we seem powerless to stop it. Our autonomy and with it our self worth, seem diminished.
How can we protect children better online?
Safeguarding must include ending data slavery of our synthesised self. I think of five things needed by policy shapers to tackle it.
Understanding what ‘online’ and the Internet mean and how the web works – i.e. what data does a visit to a web page collect about the user and what happens to that data?
Threat models and risk must go beyond the usual irl protection issues. Those posed by undermining citizens’ autonomy, loss of public trust, of control over our identity, misuse of nudge, and how some are intrinsic to the current web business model, site users or government policy are unseen are underestimated.
On user regulation (age verification / filtering) we must confront the idea that as a stand-alone step it will not create a better online experience for the user, when it will not prevent the misuse of our synthesised selves and may increase risks – regulation of misuse must shift the point of responsibility
Meaningful data privacy training must be mandatory for anyone in contact with children and its role in children’s safeguarding
Siloed thinking must go. Forward thinking must join the dots across Departments into cohesive inclusive digital strategy and that doesn’t just mean ‘let’s join all of the data, all of the time’
Respect our synthesised selves. Data slavery includes government misuse and must end if we respect children’s rights.
In the words of James T. Kirk, “the human adventure is just beginning.”
When our synthesised self is an inseparable blend of offline and online identity, every child is a synthesised child. And they are people. It is vital that government realises their obligation to protect rights to privacy, provision and participation under the Convention of the Rights of the Child and address our children’s real online life.
Governments, policy makers, and commercial companies must not use children’s offline safety as an excuse in a binary trade off to infringe on those digital rights or ignore risk and harm to the synthesised self in law, policy, and practice.
If future society is to thrive we must do all that is technologically possible to safeguard the best of what makes us human in this blend; our free will.
Part 2 follows with thoughts specific to the upcoming regulations, Digital Economy Bill andDigital Strategy
“What do an umbrella, a shark, a houseplant, the brake pads in a mining truck and a smoke detector all have in common? They can all be connected online, and in this example, in this WEF film, they are.
“By 2024 more than 50% of home Internet traffic will be used by appliances and devices, rather than just for communication and entertainment…The IoT raises huge questions on privacy and security, that have to be addressed by government, corporations and consumers.”
The Higher Education and Research Bill sucks in personal data to the centre, as well as power. It creates an authoritarian panopticon of the people within the higher education and further education systems. Section 1, parts 72-74 creates risks but offers no safeguards.
Applicants and students’ personal data is being shifted into a top-down management model, at the same time as the horizontal safeguards for its distribution are to be scrapped.
Through deregulation and the building of a centralised framework, these bills will weaken the purposes for which personal data are collected, and weaken existing requirements on consent to which the data may be used at national level. Without amendments, every student who enters this system will find their personal data used at the discretion of any future Secretary of State for Education without safeguards or oversight, and forever. Goodbye privacy.
But in addition and separately, the Bill will permit data to be used at the discretion of the Secretary of State, which waters down and removes nuances of consent for what data may or may not be used today when applicants sign up to UCAS.
Applicants today are told in the privacy policy they can consent separately to sharing their data with the Student Loans company for example. This Bill will remove that right when it permits all Applicant data to be used by the State.
This removal of today’s consent process denies all students their rights to decide who may use their personal data beyond the purposes for which they permit its sharing.
And it explicitly overrides the express wishes registered by the 28,000 applicants, 66% of respondents to a 2015 UCAS survey, who said as an example, that they should be asked before any data was provided to third parties for student loan applications (or even that their data should never be provided for this).
Not only can the future purposes be changed without limitation, by definition, when combined with other legislation, namely the Digital Economy Bill that is in the Lords at the same time right now, this shift will pass personal data together with DWP and in connection with HMRC data expressly to the Student Loans Company.
In just this one example, the Higher Education and Research Bill is being used as a man in the middle. But it will enable all data for broad purposes, and if those expand in future, we’ll never know.
This change, far from making more data available to public interest research, shifts the balance of power between state and citizen and undermines the very fabric of its source of knowledge; the creation and collection of personal data.
Further, a number of amendments have been proposed in the Lords to clause 9 (the transparency duty) which raise more detailed privacy issues for all prospective students, concerns UCAS share.
Why this lack of privacy by design is damaging
This shift takes away our control, and gives it to the State at the very time when ‘take back control’ is in vogue. These bills are building a foundation for a data Brexit.
And without future limitation, what might be imposed is unknown.
This shortsightedness will ultimately cause damage to data integrity and the damage won’t come in education data from the Higher Education Bill alone. The Higher Education and Research Bill is just one of three bills sweeping through Parliament right now which build a cumulative anti-privacy storm together, in what is labelled overtly as data sharing legislation or is hidden in tucked away clauses.
Unlike the Higher Education and Research Bill, it may not fundamentally changing how the State gathers information on further education, but it has the potential to do so on use.
The change is a generalisation of purposes. Currently, subsection 1 of section 54 refers to “purposes of the exercise of any of the functions of the Secretary of State under Part 4 of the Apprenticeships, Skills, Children and Learning Act 2009”.
Therefore, the government argues, “it would not hold good in circumstances where certain further education functions were transferred from the Secretary of State to some combined authorities in England, which is due to happen in 2018.”<
This is why clause 38 will amend that wording to “purposes connected with further education”.
Whatever the details of the reason, the purposes are broader.
Again, combined with the Digital Economy Bill’s open ended purposes, it means the Secretary of State could agree to pass these data on to every other government department, a range of public bodies, and some private organisations.
These loose purposes, without future restrictions, definitions of third parties it could be given to or why, or clear need to consult the public or parliament on future scope changes, is a repeat of similar legislative changes which have resulted in poor data practices using school pupil data in England age 2-19 since 2000.
Policy makers should consider whether the intent of these three bills is to give out identifiable, individual level, confidential data of young people under 18, for commercial use without their consent? Or to journalists and charities access? Should it mean unfettered access by government departments and agencies such as police and Home Office Removals Casework teams without any transparent register of access, any oversight, or accountability?
These are today’s uses by third-parties of school children’s individual, identifiable and sensitive data from the National Pupil Database.
Uses of data not as statistics, but named individuals for interventions in individual lives.
Hoping that the data transfers to the Home Office won’t result in the deportation of thousands we would not predict today, may be naive.
Under the new open wording, the Secretary of State for Education might even decide to sell the nation’s entire Technical and Further Education student data to Trump University for the purposes of their ‘research’ to target marketing at UK students or institutions that may be potential US post-grad applicants. The Secretary of State will have the data simply because she “may require [it] for purposes connected with further education.”
And to think US buyers or others would not be interested is too late.
In 2015 Stanford University made a request of the National Pupil Database for both academic staff and students’ data. It was rejected. We know this only from the third party release register. Without any duty to publish requests, approved users or purposes of data release, where is the oversight for use of these other datasets?
If these are not the intended purposes of these three bills, if there should be any limitation on purposes of use and future scope change, then safeguards and oversight need built into the face of the bills to ensure data privacy is protected and avoid repeating the same again.
Hoping that the decision is always going to be, ‘they wouldn’t approve a request like that’ is not enough to protect millions of students privacy.
The three bills are a perfect privacy storm
As other Europeans seek to strengthen the fundamental rights of their citizens to take back control of their personal data under the GDPR coming into force in May 2018, the UK government is pre-emptively undermining ours in these three bills.
Young people, and data dependent institutions, are asking for solutions to show what personal data is held where, and used by whom, for what purposes. That buys in the benefit message that builds trust showing what you said you’d do with my data, is what you did with my data. [1] [2]
Reality is that in post-truth politics it seems anything goes, on both sides of the Pond. So how will we trust what our data is used for?
2015-16 advice from the cross party Science and Technology Committee suggested data privacy is unsatisfactory, “to be left unaddressed by Government and without a clear public-policy position set out“. We hear the need for data privacy debated about use of consumer data, social media, and on using age verification. It’s necessary to secure the public trust needed for long term public benefit and for economic value derived from data to be achieved.
But the British government seems intent on shortsighted legislation which does entirely the opposite for its own use: in the Higher Education Bill, the Technical and Further Education Bill and in the Digital Economy Bill.
These bills share what Baroness Chakrabarti said of the Higher Education Bill in its Lords second reading on the 6th December, “quite an achievement for a policy to combine both unnecessary authoritarianism with dangerous degrees of deregulation.”
Unchecked these Bills create the conditions needed for catastrophic failure of public trust. They shift ever more personal data away from personal control, into the centralised control of the Secretary of State for unclear purposes and use by undefined third parties. They jeopardise the collection and integrity of public administrative data.
To future-proof the immediate integrity of student personal data collection and use, the DfE reputation, and public and professional trust in DfE political leadership, action must be taken on safeguards and oversight, and should consider:
Transparency register: a public record of access, purposes, and benefits to be achieved from use
Subject Access Requests: Providing the public ways to access copies of their own data
Consent procedures should be strengthened for collection and cannot say one thing, and do another
Ability to withdraw consent from secondary purposes should be built in by design, looking to GDPR from 2018
Clarification of the legislative purpose of intended current use by the Secretary of State and its boundaries shoud be clear
Future purpose and scope change limitations should require consultation – data collected today must not used quite differently tomorrow without scrutiny and ability to opt out (i.e. population wide registries of religion, ethnicity, disability)
Review or sunset clause
If the legislation in these three bills pass without amendment, the potential damage to privacy will be lasting.
Schools Minister Nick Gibb responded on July 25th 2016: ”
“These new data items will provide valuable statistical information on the characteristics of these groups of children […] “The data will be collected solely for internal Departmental use for the analytical, statistical and research purposes described above. There are currently no plans to share the data with other government Departments”
[2] December 15, publication of MOU between the Home Office Casework Removals Team and the DfE, reveals “the previous agreement “did state that DfE would provide nationality information to the Home Office”, but that this was changed “following discussions” between the two departments.” http://schoolsweek.co.uk/dfe-had-agreement-to-share-pupil-nationality-data-with-home-office/
The agreement was changed on 7th October 2016 to not pass nationality data over. It makes no mention of not using the data within the DfE for the same purposes.
“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.
Then look at the voting process changes in North Carolina and see how that same data, the same research knowledge might be applied to exclude, to restrict rights, and to disempower.
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
References:
Report: Caldicott review – National Data Guardian for Health and Care Review of Data Security, Consent and Opt-Outs 2016
This blog post is also available as an audio file on soundcloud.
What constitutes the public interest must be set in a universally fair and transparent ethics framework if the benefits of research are to be realised – whether in social science, health, education and more – that framework will provide a strategy to getting the pre-requisite success factors right, ensuring research in the public interest is not only fit for the future, but thrives. There has been a climate change in consent. We need to stop talking about barriers that prevent datasharing and start talking about the boundaries within which we can.
What is the purpose for which I provide my personal data?
‘We use math to get you dates’, says OkCupid’s tagline.
That’s the purpose of the site. It’s the reason people log in and create a profile, enter their personal data and post it online for others who are looking for dates to see. The purpose, is to get a date.
When over 68K OkCupid users registered for the site to find dates, they didn’t sign up to have their identifiable data used and published in ‘a very large dataset’ and onwardly re-used by anyone with unregistered access. The users data were extracted “without the express prior consent of the user […].”
Are the registration consent purposes compatible with the purposes to which the researcher put the data should be a simple enough question. Are the research purposes what the person signed up to, or would they be surprised to find out their data were used like this?
Questions the “OkCupid data snatcher”, now self-confessed ‘non-academic’ researcher, thought unimportant to consider.
But it appears in the last month, he has been in good company.
Google DeepMind, and the Royal Free, big players who do know how to handle data and consent well, paid too little attention to the very same question of purposes.
The boundaries of how the users of OkCupid had chosen to reveal information and to whom, have not been respected in this project.
Nor were these boundaries respected by the Royal Free London trust that gave out patient data for use by Google DeepMind with changing explanations, without clear purposes or permission.
The respectful ethical boundaries of consent to purposes, disregarding autonomy, have indisputably broken down, whether by commercial org, public body, or lone ‘researcher’.
Research purposes
The crux of data access decisions is purposes. What question is the research to address – what is the purpose for which the data will be used? The intent by Kirkegaard was to test:
“the relationship of cognitive ability to religious beliefs and political interest/participation…”
In this case the question appears intended rather a test of the data, not the data opened up to answer the test. While methodological studies matter, given the care and attention [or self-stated lack thereof] given to its extraction and any attempt to be representative and fair, it would appear this is not the point of this study either.
The data doesn’t include profiles identified as heterosexual male, because ‘the scraper was’. It is also unknown how many users hide their profiles, “so the 99.7% figure [identifying as binary male or female] should be cautiously interpreted.”
“Furthermore, due to the way we sampled the data from the site, it is not even representative of the users on the site, because users who answered more questions are overrepresented.” [sic]
The paper goes on to say photos were not gathered because they would have taken up a lot of storage space and could be done in a future scraping, and
“other data were not collected because we forgot to include them in the scraper.”
The data are knowingly of poor quality, inaccurate and incomplete. The project cannot be repeated as ‘the scraping tool no longer works’. There is an unclear ethical or peer review process, and the research purpose is at best unclear. We can certainly give someone the benefit of the doubt and say intent appears to have been entirely benevolent. It’s not clear what the intent was. I think it is clearly misplaced and foolish, but not malevolent.
The trouble is, it’s not enough to say, “don’t be evil.” These actions have consequences.
When the researcher asserts in his paper that, “the lack of data sharing probably slows down the progress of science immensely because other researchers would use the data if they could,” in part he is right.
Google and the Royal Free have tried more eloquently to say the same thing. It’s not research, it’s direct care, in effect, ignore that people are no longer our patients and we’re using historical data without re-consent. We know what we’re doing, we’re the good guys.
However the principles are the same, whether it’s a lone project or global giant. And they’re both wildly wrong as well. More people must take this on board. It’s the reason the public interest needs the Dame Fiona Caldicott review published sooner rather than later.
Just because there is a boundary to data sharing in place, does not mean it is a barrier to be ignored or overcome. Like the registration step to the OkCupid site, consent and the right to opt out of medical research in England and Wales is there for a reason.
We’re desperate to build public trust in UK research right now. So to assert that the lack of data sharing probably slows down the progress of science is misplaced, when it is getting ‘sharing’ wrong, that caused the lack of trust in the first place and harms research.
A climate change in consent
There has been a climate change in public attitude to consent since care.data, clouded by the smoke and mirrors of state surveillance. It cannot be ignored. The EUGDPR supports it. Researchers may not like change, but there needs to be an according adjustment in expectations and practice.
Without change, there will be no change. Public trust is low. As technology advances and if we continue to see commercial companies get this wrong, we will continue to see public trust falter unless broken things get fixed. Change is possible for the better. But it has to come from companies, institutions, and people within them.
Like climate change, you may deny it if you choose to. But some things are inevitable and unavoidably true.
There is strong support for public interest research but that is not to be taken for granted. Public bodies should defend research from being sunk by commercial misappropriation if they want to future-proof public interest research.
The purpose for which the people gave consent are the boundaries within which you have permission to use data, that gives you freedom within its limits, to use the data. Purposes and consent are not barriers to be overcome.
If research is to win back public trust developing a future proofed, robust ethical framework for data science must be a priority today.
This case study and indeed the Google DeepMind recent episode by contrast demonstrate the urgency with which working out what common expectations and oversight of applied ethics in research, who gets to decide what is ‘in the public interest’ and data science public engagement must be made a priority, in the UK and beyond.
Boundaries in the best interest of the subject and the user
Society needs research in the public interest. We need good decisions made on what will be funded and what will not be. What will influence public policy and where needs attention for change.
To do this ethically, we all need to agree what is fair use of personal data, when is it closed and when is it open, what is direct and what are secondary uses, and how advances in technology are used when they present both opportunities for benefit or risks to harm to individuals, to society and to research as a whole.
The potential benefits of research are potentially being compromised for the sake of arrogance, greed, or misjudgement, no matter intent. Those benefits cannot come at any cost, or disregard public concern, or the price will be trust in all research itself.
In discussing this with social science and medical researchers, I realise not everyone agrees. For some, using deidentified data in trusted third party settings poses such a low privacy risk, that they feel the public should have no say in whether their data are used in research as long it’s ‘in the public interest’.
For the DeepMind researchers and Royal Free, they were confident even using identifiable data, this is the “right” thing to do, without consent.
For the Cabinet Office datasharing consultation, the parts that will open up national registries, share identifiable data more widely and with commercial companies, they are convinced it is all the “right” thing to do, without consent.
How can researchers, society and government understand what is good ethics of data science, as technology permits ever more invasive or covert data mining and the current approach is desperately outdated?
Who decides where those boundaries lie?
“It’s research Jim, but not as we know it.” This is one aspect of data use that ethical reviewers will need to deal with, as we advance the debate on data science in the UK. Whether independents or commercial organisations. Google said their work was not research. Is‘OkCupid’ research?
If this research and data publication proves anything at all, and can offer lessons to learn from, it is perhaps these three things:
Researchers and ethics committees need to adjust to the climate change of public consent. Purposes must be respected in research particularly when sharing sensitive, identifiable data, and there should be no assumptions made that differ from the original purposes when users give consent.
Data ethics and laws are desperately behind data science technology. Governments, institutions, civil, and all society needs to reach a common vision and leadership how to manage these challenges. Who defines these boundaries that matter?
How do we move forward towards better use of data?
Our data and technology are taking on a life of their own, in space which is another frontier, and in time, as data gathered in the past might be used for quite different purposes today.
The public are being left behind in the game-changing decisions made by those who deem they know best about the world we want to live in. We need a say in what shape society wants that to take, particularly for our children as it is their future we are deciding now.
How about an ethical framework for datasharing that supports a transparent public interest, which tries to build a little kinder, less discriminating, more just world, where hope is stronger than fear?
Working with people, with consent, with public support and transparent oversight shouldn’t be too much to ask. Perhaps it is naive, but I believe that with an independent ethical driver behind good decision-making, we could get closer to datasharing like that.
Purposes and consent are not barriers to be overcome. Within these, shaped by a strong ethical framework, good data sharing practices can tackle some of the real challenges that hinder ‘good use of data’: training, understanding data protection law, communications, accountability and intra-organisational trust. More data sharing alone won’t fix these structural weaknesses in current UK datasharing which are our really tough barriers to good practice.
How our public data will be used in the public interest will not be a destination or have a well defined happy ending, but it is a long term process which needs to be consensual and there needs to be a clear path to setting out together and achieving collaborative solutions.
While we are all different, I believe that society shares for the most part, commonalities in what we accept as good, and fair, and what we believe is important. The family sitting next to me have just counted out their money and bought an ice cream to share, and the staff gave them two. The little girl is beaming. It seems that even when things are difficult, there is always hope things can be better. And there is always love.
I’ve been struck by stories I’ve heard on the datasharing consultation, on data science, and on data infrastructures as part of ‘government as a platform’ (#GaaPFuture) in recent weeks. The audio recorded by the Royal Statistical Society on March 17th is excellent, and there were some good questions asked.
There were even questions from insurance backed panels to open up more data for commercial users, and calls for journalists to be seen as accredited researchers, as well as to include health data sharing. Three things that some stakeholders, all users of data, feel are missing from consultation, and possibly some of those with the most widespread public concern and lowest levels of public trust. [1]
What I feel is missing in consultation discussions are:
a representative range of independent public voice
a compelling story of needs – why tailored public services benefits citizens from whom data is taken, not only benefits data users
I focus on the other strands that use identifiable data for targeted interventions. Tailored public services, Debt, Fraud, Energy Companies’ use. I think we talk too little of people, and real needs.
Why the State wants more datasharing is not yet a compelling story and public need and benefit seem weak.
So far the creation of new data intermediaries, giving copies of our personal data to other public bodies – and let’s be clear that this often means through commercial representatives like G4S, Atos, Management consultancies and more – is yet to convince me of true public needs for the people, versus wants from parts of the State.
What the consultation hopes to achieve, is new powers of law, to give increased data sharing increased legal authority. However this alone will not bring about the social legitimacy of datasharing that the consultation appears to seek through ‘open policy making’.
Legitimacy is badly needed if there is to be public and professional support for change and increased use of our personal data as held by the State, which is missing today, as care.data starkly exposed. [2]
The gap between Social Legitimacy and the Law
Almost 8 months ago now, before I knew about the datasharing consultation work-in-progress, I suggested to BIS that there was an opportunity for the UK to drive excellence in public involvement in the use of public data by getting real engagement, through pro-active consent.
The carrot for this, is achieving the goal that government wants – greater legal clarity, the use of a significant number of consented people’s personal data for complex range of secondary uses as a secondary benefit.
It was ignored.
If some feel entitled to the right to infringe on citizens’ privacy through a new legal gateway because they believe the public benefit outweighs private rights, then they must also take on the increased balance of risk of doing so, and a responsibility to do so safely. It is in principle a slippery slope. Any new safeguards and ethics for how this will be done are however unclear in those data strands which are for targeted individual interventions. Especially if predictive.
Upcoming discussions on codes of practice [which have still to be shared] should demonstrate how this is to happen in practice, but codes are not sufficient. Laws which enable will be pushed to their borderline of legal and beyond that of ethical.
In England who would have thought that the 2013 changes that permitted individual children’s data to be given to third parties [3] for educational purposes, would mean giving highly sensitive, identifiable data to journalists without pupils or parental consent? The wording allows it. It is legal. However it fails the DPA Act legal requirement of fair processing. Above all, it lacks social legitimacy and common sense.
In Scotland, there is current anger over the intrusive ‘named person’ laws which lack both professional and public support and intrude on privacy. Concerns raised should be lessons to learn from in England.
Common sense says laws must take into account social legitimacy.
We have been told at the open policy meetings that this change will not remove the need for informed consent. To be informed, means creating the opportunity for proper communications, and also knowing how you can use the service without coercion, i.e. not having to consent to secondary data uses in order to get the service, and knowing to withdraw consent at any later date. How will that be offered with ways of achieving the removal of data after sharing?
The stick for change, is the legal duty that the recent 2015 CJEU ruling reiterating the legal duty to fair processing [4] waved about. Not just a nice to have, but State bodies’ responsibility to inform citizens when their personal data are used for purposes other than those for which those data had initially been consented and given. New legislation will not remove this legal duty.
How will it be achieved without public engagement?
Engagement is not PR
Failure to act on what you hear from listening to the public is costly.
Engagement is not done *to* people, don’t think ‘explain why we need the data and its public benefit’ will work. Policy makers must engage with fears and not seek to dismiss or diminish them, but acknowledge and mitigate them by designing technically acceptable solutions. Solutions that enable data sharing in a strong framework of privacy and ethics, not that sees these concepts as barriers. Solutions that have social legitimacy because people support them.
Mr Hunt’s promised February 2014 opt out of anonymised data being used in health research, has yet to be put in place and has had immeasurable costs for delayed public research, and public trust.
How long before people consider suing the DH as data controller for misuse? From where does the arrogance stem that decides to ignore legal rights, moral rights and public opinion of more people than those who voted for the Minister responsible for its delay?
This attitude is what fails care.data and the harm is ongoing to public trust and to confidence for researchers’ continued access to data.
The same failure was pointed out by the public members of the tiny Genomics England public engagement meeting two years ago in March 2014, called to respond to concerns over the lack of engagement and potential harm for existing research. The comms lead made a suggestion that the new model of the commercialisation of the human genome in England, to be embedded in the NHS by 2017 as standard clinical practice, was like steam trains in Victorian England opening up the country to new commercial markets. The analogy was felt by the lay attendees to be, and I quote, ‘ridiculous.’
Exploiting confidential personal data for public good must have support and good two-way engagement if it is to get that support, and what is said and agreed must be acted on to be trustworthy.
Policy makers must take into account broad public opinion, and that is unlikely to be submitted to a Parliamentary consultation. (Personally, I first knew such processes existed only when care.data was brought before the Select Committee in 2014.) We already know what many in the public think about sharing their confidential data from the work with care.data and objections to third party access, to lack of consent. Just because some policy makers don’t like what was said, doesn’t make that public opinion any less valid.
Open policy making is not open just because it says it is. Who has been invited, participated, and how their views actually make a difference on content and implementation is what matters.
Adding controversial ideas at the last minute is terrible engagement, its makes the process less trustworthy and diminishes its legitimacy.
This last minute change suggests some datasharing will be dictated despite critical views in the policy making and without any public engagement. If so, we should ask policy makers on what mandate?
Democracy depends on social legitimacy. Once you lose public trust, it is not easy to restore.
Can new datasharing laws win social legitimacy, public trust and support without public engagement?
In my next post I’ll post look at some of the public engagement work done on datasharing to date, and think about ethics in how data are applied.
