The ethics of organ transplantation

Libertarian paternalism allows individuals' well-being to be helped without impacting on freedom of

Most political decisions involve trade-offs between different interest groups. Changes in the tax system, for example, typically leave some better-off and others worse-off. Even when trade-offs between different individuals aren’t at stake, political decisions will be a balancing act between different values.

For example, airport security restrictions limit our freedom, in at least the hope of increasing our physical security; those who benefit are the same as those who bear the costs, but everyone has to take a loss (of freedom) in order to create a gain in security.

What is remarkable about the government’s new ‘presumed consent’ proposals on organ transplantation is that they involves no such trade-offs. No-one will be made worse-off in any way, although others will benefit, and no important value is sacrificed in pursuit of some other goal. It’s a rare case of the sort of ‘win-win’ solution that governments may occasionally hope to find to difficult political problems. We should support these kinds of ‘win-win’ policies wherever they crop up, and governments should do more to identify them in other areas.

At the moment, organ transplantation in the UK is based on an ‘opt-in’ system. Organs are harvested for use in transplants only when the dead individual was a carrier of a Donor Card, or where the individual’s family have volunteered his or her organs for use.

This contrasts with the system in countries like Spain, where there is ‘presumed consent’ for everyone to give their organs for use in transplants. Individuals remain free to opt-out of these arrangements if they so wish, and families retain the right to refuse permission for their loved-one’s organs to be harvested.

Put simply, in answer to the question of whether a dying person’s organs will be available for transplant, the default answer in Spain is ‘Yes’, whereas the default answer in the UK is ‘No’.

Unsurprisingly, this difference in the ‘default position’ has a large influence on the number of transplants that are actually carried out each year in the two countries. In Spain the figure is 33.8 per million of population, whereas in the UK it is just 12.9 per million.

Accordingly, thousands of people in the UK are waiting for organ transplants, and many will die before the end of their wait. If enough organs for transplant could be found, about 1,000 extra lives could be saved every year.

The government’s Chief Medical Officer Sir Liam Donaldson backs the move to the Spanish model of ‘presumed consent’, as does the government’s task force on organ donation. It looks like we can expect the Brown government to bring in a thoroughly sensible change of policy following these recommendations, thereby saving hundreds of lives every year.

As well as the move towards ‘presumed consent’, the UK will also be adopting something closer to the Spanish model of having highly-trained ‘organ procurement officers’, who will deal with relatives at the fraught but crucial time just before and just after death. (To see such a ‘procurement officer’ at work, and to see how deep this culture of organ donation now runs in Spanish society, it is instructive to watch Pedro Almodovar’s wonderful film All About My Mother, in which the central character, Manuela, works as a procurement officer.)

The move to the Spanish model of ‘presumed consent’ is a win-win situation because it makes many people better off (i.e. those who will receive organs), whilst leaving no-one worse off. Indeed, by relieving some of the pressure on the difficult decision of whether to donate, it arguably makes things somewhat easier for family members. So, everyone benefits. It also involves no trade-offs in terms of values because it increases the life expectancy and quality-of-life of organ recipients without restricting the freedom of choice of anyone else. Donors and their families still have the entitlement to withhold organs, for whatever reason, and so they face no limitation on their freedom. It is just that ‘default position’ against which they make their choice has been changed.

The Spanish model with it’s ‘soft’ opt-out thereby contrasts with ‘hard’ opt-out in operation in Austria, where family members are not consulted. Perhaps the Austrian policy is the best option all-things-considered, but, by curtailing the freedom of choice of family members, it does not have the ‘win-win’ structure of the Spanish model.

These sorts of win-win policies can crop up all over the place. For example, some American corporations found that, where they offered their employees a huge range of investment products for their retirement savings, the choice was simply too bewildering, and employees instead chose to save nothing. Too much choice, after all, is useless when we do not have the right kind of information at our fingertips. What such companies have instead done is to sign-up their employees for a sensible and prudent investment plan as the default option, whilst still leaving them the full entitlement to ‘opt-out’ of that plan, or to transfer to an alternative.

The American legal theorist Cass Sunstein has called these sorts of policies forms of ‘libertarian paternalism’ – ‘libertarian’ because no-one’s freedom of choice is affected, but nevertheless a form of ‘paternalism’ because the well-being of individuals is helped directly by the policy. These sorts of ‘libertarian paternalist’ policies are the ‘one-person’ version of the many-person ‘win-win’ policy involved in the Spanish model of organ donation. Individuals gain in terms of their future well-being, but lose nothing in terms of freedom, because they can still choose to do whatever they were entitled to do before.

The lessons of the ‘Spanish model’ are twofold. Firstly, one can do a lot in health policy and social policy just by manipulating what the default option might be, without interfering with anyone’s freedom of choice. Secondly, although politics is usually about making tough choices, the existence of these kinds of ‘win-win’ policies means that sometimes doing the right thing in politics can be surprisingly easy.

Martin O’Neill is a political philosopher, based at the Centre for Political Theory in the Department of Politics at the University of Manchester. He has previously taught at Cambridge and Harvard, and is writing a book on Corporations and Social Justice.
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Are smart toys spying on children?

If you thought stepping on a Lego was bad, consider the new ways in which toys can hurt and harm families.

In January 1999, the president of Tiger Electronics, Roger Shiffman, was forced to issue a statement clearing the name of the company’s hottest new toy. “Furby is not a spy,” he announced to the waiting world.

Shiffman was speaking out after America’s National Security Agency (NSA) banned the toy from its premises. The ban was its response to a playground rumour that Furbies could be taught to speak, and therefore could record and repeat human speech. “The NSA did not do their homework,” said Shiffman at the time.

But if America’s security agencies are still in the habit of banning toys that can record, spy, and store private information, then the list of contraband items must be getting exceptionally long. Nearly 18 years after TE were forced to deny Furby’s secret agent credentials, EU and US consumer watchdogs are filing complaints about a number of WiFi and Bluetooth connected interactive toys, also known as smart toys, which have hit the shelves. Equipped with microphones and an internet connection, many have the power to invade both children’s and adults’ private lives.

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“We wanted a smart toy that could learn and grow with a child,” says JP Benini, the co-founder of the CogniToys “Dino”, an interactive WiFi-enabled plastic dinosaur that can hold conversations with children and answer their questions. Benini and his team won the 2014 Watson Mobile Developer Challenge, allowing them to use the question-answering software IBM Watson to develop the Dino. As such, unlike the “interactive” toys of the Nineties and Noughties, Dino doesn’t simply reiterate a host of pre-recorded stock phrases, but has real, organic conversations. “We grew it from something that was like a Siri for kids to something that was more conversational in nature.”

In order for this to work, Dino has a speaker in one nostril and a microphone in the other, and once a child presses the button on his belly, everything they say is processed by the internet-connected toy. The audio files are turned into statistical data and transcripts, which are then anonymised and encrypted. Most of this data is, in Benini’s words, “tossed out”, but his company, Elemental Path, which owns CogniToys, do store statistical data about a child, which they call “Play Data”. “We keep pieces from the interaction, not the full interaction itself,” he tells me.

“Play Data” are things like a child’s favourite colour or sport, which are used to make a profile of the child. This data is then available for the company to view, use, and pass on to third parties, and for parents to see on a “Parental Panel”. For example, if a child tells Dino their favourite colour is “red”, their mother or father will be able to see this on their app, and Elemental Path will be able to use this information to, Benini says, “make a better toy”.

Currently, the company has no plans to use the data with any external marketers, though it is becoming more and more common for smart toys to store and sell data about how they are played with. “This isn’t meant to be just another monitoring device that's using the information that it gathers to sell it back to its user,” says Benini.

Sometimes, however, Elemental Path does save, store, and use the raw audio files of what a child has said to the toy. “If the Dino is asked a question that it doesn’t know, we take that question and separate it from the actual child that’s asking it and it goes into this giant bucket of unresolved questions and we can analyse that over time,” says Benini. It is worth noting, however, that Amazon reviews of the toy claim it is frequently unable to answer questions, meaning there is potentially an abundance of audio saved, rather than it being an occasional occurrence.

CogniToys have a relatively transparent Privacy Policy on their website, and it is clear that Benini has considered privacy at length. He admits that the company has been back and forth about how much data to store, originally offering parents the opportunity to see full transcripts of what their child had been saying, until many fed back that they found this “creepy”. Dino is not the first smart toy to be criticised in this way.

Hello Barbie is the world’s first interactive Barbie doll, and when it was released by Mattel in 2015, it was met with scorn by parents’ rights groups and privacy campaigners. Like Dino, the doll holds conversations with children and stores data about them which it passes back to the parents, and articles expressing concerns about the toy featured on CNN, the Guardian, and the New York Times. Despite Dino’s similarities, however, Benini’s toy received almost no negative attention, while Hello Barbie won the Campaign for a Commercial-Free Childhood’s prize for worst toy of the year 2015.

“We were lucky with that one,” he says, “Like the whole story of the early bird gets the worm but the second worm doesn’t get eaten. Coming second on all of this allowed us to be prepared to address the privacy concerns in greater depth.”

Nonetheless, Dino is in many ways essentially the same as Hello Barbie. Both toys allow companies and parents to spy on children’s private playtimes, and while the former might seem more troubling, the latter is not without its problems. A feature on the Parental Panel of the Dino also allows parents to see the exact wording of questions children have asked about certain difficult topics, such as sex or bullying. In many ways, this is the modern equivalent of a parent reading their child's diary. 

“Giving parents the opportunity to side-step their basic responsibility of talking to, engaging with, encouraging and reassuring their child is a terrifying glimpse into a society where plastic dinosaurs rule and humans are little more than machines providing the babies for the reptile robots to nurture,” says Renate Samson, the chief executive of privacy campaign group Big Brother Watch. “We are used to technology providing convenience in our lives to the detriment of our privacy, but allowing your child to be taught, consoled and even told to meditate by a WiFi connected talking dinosaur really is a step in the wrong direction.”

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Toy companies and parents are one thing, however, and to many it might seem trivial for a child’s privacy to be comprised in this way. Yet many smart toys are also vulnerable to hackers, meaning security and privacy are under threat in a much more direct way. Ken Munro, of Pen Test Partners, is an ethical hacker who exposed security flaws in the interactive smart toy “My Friend Cayla” by making her say, among other things, “Calm down or I will kick the shit out of you.”

“We just thought ‘Wow’, the opportunity to get a talking doll to swear was too good,” he says. “It was the kid in me. But there were deeper concerns.”

Munro explains that any device could connect to the doll over Bluetooth, provided it was in range, as the set-up didn’t require a pin or password. He also found issues with the encryption processes used by the company. “You can say anything to a child through the doll because there's no security,” he says. “That means you've got a device that can potentially be used to groom a child and that's really creepy.”

Pen Test Partners tells companies about the flaws they find with their products in a process they call “responsible disclosure”. Most of the time, companies are grateful for the information, and work through ways to fix the problem. Munro feels that Vivid Toy Group, the company behind Cayla, did a “poor job” at fixing the issue. “All they did was put one more step in the process of getting it to swear for us.”

It is one thing for a hacker to speak to a child through a toy and another for them to hear them. Early this year, a hack on baby monitors ignited such concerns. But any toy with speech recognition that is connected to the internet is also vulnerable to being hacked. The data that is stored about how children play with smart toys is also under threat, as Fisher Price found out this year when a security company managed to obtain the names, ages, birthdays, and genders of children who had played with its smart toys. In 2015, VTech also admitted that five million of its customers had their data breached in a hack.

“The idea that your child shares their playtime with a device which could potentially be hacked, leaving your child’s inane or maybe intimate and revealing questions exposed is profoundly worrying,” says Samson. Today, the US Electronic Privacy Information Center (EPIC) said in a statement that smart toys “pose an imminent and immediate threat to the safety and security of children in the United States”. 

Munro says big brands are usually great at tackling these issues, but warns about smaller, cheaper brands who have less to lose than companies like Disney or Fisher Price. “I’m not saying they get it right but if someone does find a problem they’ve got a huge incentive to get it right subsequently,” he says of larger companies. Thankfully, Munro says that he found Dino to be secure. “I would be happy for my kids to play with it,” he says. “We did find a couple of bugs but we had a chat with them and they’re a good bunch. They aren’t perfect but I think they’ve done a hell of a lot of a better job than some other smart toy vendors.”

Benini appears alert to security and the credibility it gives his company. “We took the security very, very seriously,” he says. “We were still building our systems whilst these horror stories were coming about so I already set pipelines and parameters in place. With a lot of devices out there it seems that security takes a backseat to the idea, which is really unfortunate when you’re inviting these devices into your home.”

As well as being wary of smaller brands, Munro advises that parents should look out for Bluetooth toys without a secure pairing process (ie. any device can pair with the toy if near enough), and to think twice about which toys you connect to your WiFi. He also advises to use unique passwords for toys and their corresponding apps.

“You might think ‘It's just a toy, so I can use the same password I put in everything else’ – dog’s name, football club, whatever – but actually if that ever got hacked you’d end up getting all your accounts that use that same password hacked,” he says.

Despite his security advice, Munro describes himself as “on the fence” about internet-connected smart toys as a whole. “Most internet of things devices can be hacked in one way or another,” he says. “I would urge caution.”

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Is all of this legal? Companies might not be doing enough ethically to protect the privacy of children, but are they acting responsibly within the confines of the law?

Benini explains that Dino complies with the United States Children's Online Privacy Protection Act (COPPA) of which there is no real equivalent in the UK. COPPA says that companies must have parental permission to collect personal information over the internet about children under 13 years of age. “We’ve tried to go above and beyond the original layout of COPPA,” says Benini, when describing CogniToys transparent privacy documents. Parents give their consent for Elemental Path to collect their children’s data when they download the app that pairs with the toy.

Dino bears a striking similarity to Amazon Echo and Google Home, smart speakers that listen out for commands and questions in your home. Everything that is said to Amazon Echo is recorded and sent to the cloud, and an investigation by the Guardian earlier this year discovered that this does not comply with COPPA. We are therefore now in a strange position whereby many internet of things home devices are legally considered a threat to a child’s privacy, whereas toys with the same capabilities are not. This is an issue because many parents may not actually be aware that they are handing over their children’s data when installing a new toy.

As of today, EU consumer rights groups are also launching complaints against certain smart toys, claiming they breach the EU Unfair Contract Terms Directive and the EU Data Protection Directive, as well as potentially the Toy Safety Directive. Though smart toys may be better regulated in Europe, there are no signs that the problem is being tackled in the UK. 

At a time when the UK government are implementing unprecedented measures to survey its citizens on the internet and Jeremy Hunt wants companies to scour teens’ phones for sexts, it seems unlikely that any legislation will be enacted that protects children’s privacy from being violated by toy companies. Indeed, many internet of things companies – including Elemental Path – admit they will hand over your data to government and law enforcement officials when asked.

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As smart toys develop, the threat they pose to children only becomes greater. The inclusion of sensors and cameras means even more data can be collected about children, and their privacy can and will be compromised in worrying ways.

Companies, hackers, and even parents are denying children their individual right to privacy and private play. “Children need to feel that they can play in their own place,” says Samson. It is worrying to set a precedent where children get used to surveillance early on. All of this is to say nothing of the educational problems of owning a toy that will tell you (rather than teach you) how to spell “space” and figure out “5+8”.

In a 1999 episode of The Simpsons, “Grift of the Magi”, a toy company takes over Springfield Elementary and spies on children in order to create the perfect toy, Funzo. It is designed to destroy all other toys, just in time for Christmas. Many at the time criticised the plot for being absurd. Like the show's prediction of President Trump, however, it seems that we are living in a world where satire slowly becomes reality.

Amelia Tait is a technology and digital culture writer at the New Statesman.