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Patient Feedback in Product Lifecycle Management of Brain Pacemakers

The Need for Patient Feedback in the Product Lifecycle Management of Deep Brain Stimulation Devices

Katina Michael interviews Gary Olhoeft

Background

Professor Emeritus Gary Olhoeft of the Colorado School of Mines

Professor Emeritus Gary Olhoeft of the Colorado School of Mines

This interview was conducted by Katina Michael with Gary Olhoeft, a deep brain stimulation (DBS) device recipient on September 8, 2017. Katina is a Professor at the University of Wollongong who has been researching the social implications of implantable devices for the last 20 years and Gary is a retired Emeritus Professor of Geophysics at the Colorado School of Mines. Gary has previously taught a number of subjects related to Advanced Electrical and Electromagnetic Methods, Antennas, Near Surface Field Methods, Ground Penetrating Radar, and Complex Resistivity. Gary had a deep brain stimulator  installed in 2009 to help him combat his Parkinson’s Disease. This interview is a participant observer’s first-hand journey into a life dependent on a deep brain stimulator. Of particular interest is the qualified nature of the participant in the field of electromagnetics with respect to his first-hand experience of the benefits, risks and challenges surrounding the device that has been implanted in his body. Katina first came to know of Gary’s work through his open comments in a Gizmodo article in 2017 [i] while looking into the risks associated with biomedical devices in general. Gary has also delivered numerous presentations to the EMR Policy Institute on “Electromagnetic Interference and Medical Implants”, dating back to 2009 [ii]. The interview is broken into two parts.

KATINA MICHAEL: Gary, thank you for your time. We have previously corresponded on two full-length written questionnaires, and now this structured Skype interview. I think within my capacity in the Society for the Social Implications of Technology in the IEEE, we might be able to take some of the issues you raise forward. I think as more people come on board with various brain implants, heart pacemakers and internal diagnostic devices that the Federal Communications Commission (FCC), the Food and Drug Administration (FDA) and the health insurance industry more generally, will have to engage with at least some of the issues that you and other biomedical device recipients have identified from your experience.

GARY OLHOEFT: Thank you for the opportunity.

KATINA MICHAEL: So many people who are designing biomedical devices do not actually realise that patients are awake during some of the DBS procedure. I found on the engineering side of the design, that many engineers have never witnessed a DBS going into someone’s brain, or at least understood the actual process of implantation. I have spoken to biomedical engineers in key academic institutions that have major funded brain implant projects who have challenged me about whether or not the patient is actually awake during the process. I do find it bewildering at times that some engineers have never spoken to patients or are so withdrawn from the practical side of biomedical device deployment. Engineers tasked with some complex problems sometimes look at only solving a single part of the end-to-end design, without understanding how all the componentry works together.

GARY OLHOEFT: That’s amazing.

KATINA MICHAEL: Yes.

GARY OLHOEFT: I was also amazed to talk to the Chief Engineer at Medtronic about the DBS once. He told me the whole thing was entirely built out of discrete components with no integrated circuits because the FDA has not approved any integrated circuits yet.

KATINA MICHAEL: What do you make of this? That the regulations and the regulatory body responsible is holding things up? What is your personal position?

GARY OLHOEFT: Well, I definitely think that the regulatory body is holding things up. Just look at when the first DBS was installed in France in 1987 [iii]. It was something like 14 years before it was made available in the USA in about 2001 with FDA approval. I got mine in 2009, and they had already sold hundreds of them at that point in America.

KATINA MICHAEL: And for you at that time, there was no other alternative? I assume that if you had not adopted, that your quality of life was going to diminish quickly?

GARY OLHOEFT: That’s right. I would have continued shaking and not been able to write or I would have avoided reading, or walking or talking. Something I think I haven’t told you yet is that my device is also an interleaved device that has two settings that alternate- one is set for me to walk, and the other is set for me to talk. You used to have to choose between the two but now they can alternate because they are interleaved so that I can do both at the same time.

KATINA MICHAEL: For me Gary, it is nothing short of miracles what they are doing.

GARY OLHOEFT: Yes.

KATINA MICHAEL: And I marvel at these things. Was the FDA correct in waiting those 15 years or so before they approved or they should have approved earlier so other people may have had an improved quality of life in the United States? What do you think about the length of time it took to get approval? Are you critical of it?

GARY OLHOEFT: It depends on what they are talking about. Some of the things they are talking about with genetic modification implants- with viral inducing genetic modifications and stem cells- these things are going too fast. A doctor once told me when they go to the FDA for approval they have to go through trials. The first trial involves a few people. The next trial involves a few tens of people. And then at the approval point there are hundreds of people but then when it is approved possibly hundreds, or thousands or millions of people will get it and next all kinds of things can go wrong that they did not anticipate. So you have to be very careful about this stuff. However, the FDA seems to reinvent the wheel requiring their own testing when adequate testing has already been done in other countries.

KATINA MICHAEL: I agree with you. It is the brain we are talking about after all.

GARY OLHOEFT: The thing that bothers me most is that Apple footage you sent me. You know that clip with Steve Jobs and the Wi-Fi problem?

KATINA MICHAEL: Yes [iv].

GARY OLHOEFT: I would not have liked to have been in that room with a DBS.

KATINA MICHAEL: Yes. Interestingly I was researching that for a talk on business ethics and AI and the future and then we had this correspondence, and I just connected the two things together [v]. And if he could not run an iPod demo with that EMC (electromagnetic compatibility) interference problem when we know he would do exhaustive user testing at launches [vi], then what are we going to do Gary when we have more and more people getting implants and even more potential electromagnetic interference? I am trying to figure out what kind of design solution could tackle this?

GARY OLHOEFT: And there’s a whole bunch of other things that bother me, like the electromagnetic pulse to stop cars on freeways and the devices they have to shock people.

KATINA MICHAEL: The tasers?

GARY OLHOEFT: What about all those people that have implants like me or other kinds of implants? In one of those fictitious mystery shows someone was depicted as being killed in a bank robbery and he was killed by an electromagnetic pulse. So we can see these kinds of scenarios are making it into the public eye through the visual press.

KATINA MICHAEL: And that is a fictional account, right?

GARY OLHOEFT: It’s a fictional scenario but it is certainly possible [vii].

KATINA MICHAEL: Yes, it sure is. Exactly. I am talking at the annual conference for the Australian Communications Media Authority (ACMA) next month, and I will be using our discussion today as a single case study to raise awareness here. I am talking on implantables for non-medical applications, and there is presently a great deal of pressure from the biohacking community [viii]. A lot of these guys are my friends given my research area, but are doing some very strange things. Presently some of them are talking about hacking the brain and I am telling them you really should not be doing that without medical expertise even if it is in the name of “citizen science”. Some of them are amateur engineers and others are fully-fledged qualified engineers but not medical people. And I personally feel the brain is not to be experimented with like this. It is reminiscent of what I would call ‘backyard lobotomies’. 

GARY OLHOEFT: It is like DARPA. They have a call up at the moment to have a million electrodes inside the brain so they can communicate, not for therapeutic value like I have [ix],[x].

KATINA MICHAEL: You are likely familiar with the DARPA project from 2012, for a brain implantable device that could be used to aid former service men and women suffering from post-traumatic stress disorder, depression and anxiety [xi]. We did a special issue on this in the IEEE Technology and Society Magazine last year [xii]. They have also claimed this device solution could be used for memory enhancement. It sounds like the cyborgisation of our forces.

GARY OLHOEFT: That’s like what I have. The latest one is more like when you want to remote control a vehicle or something. The September 2017 IEEE Spectrum had an article about Brain Racers using brain controlled avatars to compete in a cyborg Olympics [xiii].

KATINA MICHAEL: Exactly. And we did raise issues in that special which I will send to you. I held a national security workshop on brain implants in the military in 2016 [xiv], at the University of Melbourne where they are doing research on stentrodes. The University of Melbourne is considered to have some leading academics in this space, receiving some partial funding I believe from DARPA [xv]. I then invited some biomedical engineers in the DBS space from the University of Melbourne to participate in the workshop, like Thomas Oxley, but all were unavailable to make it. Thomas incidentally was undergoing training in the USA related to DBS and stentrodes [xvi].

GARY OLHOEFT: Okay.

KATINA MICHAEL: There are so many things going on at present like implantables in your jaw that are so close to the ear that they can allow you to communicate wirelessly so you can hear via your teeth [xvii]. We were looking at these kinds of implants and implications at various workshops including at the University of Wollongong where we have a Centre of Excellence [xviii].

GARY OLHOEFT: It’s not surprising. In the old days, when we had the silver amalgam fillings in teeth, there were people that used to go listening to the radio through their teeth.

KATINA MICHAEL: Yes. There’s a well-known episode of the Partridge Family where Laurie gets braces and her boyfriend’s Walkman is interfering with her ability to sing songs when a film crew comes to record music in the family home [xix]. So yes, teeth are amazing, the auditory links there have been well-known for decades are just being rediscovered by the younger generation.

GARY OLHOEFT: Yes.

KATINA MICHAEL: And the communications for autonomous weapons or over-ride. Can a human be autonomous for instance? Last week we were discussing some of the ethics behind overriding someone's decision not to fire or strike at a target [xx]. Or imagine the ability to remotely control a drone just by using your thoughts, versus someone in a remote location executing the fire or strike commands without being in-situ by intercepting that communication stream. Imagine the potential to intercept a person’s thoughts and to make them physically do something. This is where for me the waters get muddied. I do not mind the advancements in the Cochlear space for instance, where deaf persons have the ability to hear music and entertainment through an embedded technological device [xxi]. I think that is another marvel, really. But I’d be interested to hear your opinion about the crossover between the medical and non-medical spaces? Do you think that is just life- that is just how innovation is? That we need to get used to this or do you believe prosthetics are the only reason we should be implanting people in the brain?

GARY OLHOEFT: I think the only reason we should be implanting people is for therapeutic reasons. For instance, I have a deep brain stimulator for a specific disease, others might have a particular problem or maybe it is to replace a part of the brain that has been damaged physically. Because the question becomes, when are we no longer human anymore if we go beyond prosthetics purposes?

KATINA MICHAEL: Yes.

GARY OLHOEFT: We have problems with driverless cars and people are talking about mirrored systems and all sorts of electronics in them that interfere with DBS. There was a paper that was published where researchers took about 10 cars at different times, and they discovered the ones that were diesel powered did not interfere because they didn’t have any ignition system [xxii]. Conventionally powered cars which had an electronic ignition system pad caused some interference. But electrics and hybrid engines had problems with people with implants [xxiii], [xxiv], [xxv], [xxvi].

KATINA MICHAEL: So do you fear getting in a vehicle at any time? Or is that not the issue, rather it is if you are driving or physically touching parts of the car?

GARY OLHOEFT: No, it’s probably if you are just in the vehicle itself because of the way they have the wiring in some vehicles. A Prius has 8 computers inside it, Wi-Fi and Bluetooth, and the way they run the wiring from the batteries to the front, it is not twisted wiring it is just a straight pair of wiring. If it was twisted pair there would be a lot less magnetic noise inside the car body.

KATINA MICHAEL: So that’s the car company trying to save money, right?

GARY OLHOEFT: I really don’t know. We have a Prius as well. I’ve tested our car. We have two sets of batteries. The front and right passenger seat are okay but the driver’s position is very noisy. There’s a woman we know, when she drives her Prius, her deep brain stimulator turns off when the car goes into charging mode (while braking) [xxvii].

KATINA MICHAEL: Oh dear, this is a major problem.

GARY OLHOEFT: That’s why I don’t drive.

KATINA MICHAEL: These issues must get more visibility. They can no longer be ignored. This is where consumer electronics come head-to-head with biomedical devices.

GARY OLHOEFT: I’ve also sent you documents that I’ve sent to the FCC and FDA.

KATINA MICHAEL: I read these.

GARY OLHOEFT: I’ve not received any response to these.

KATINA MICHAEL: This is truly an important research area. This topic crosses over engineering, policy and society. It is really about the importance of including the end-user (or patient in this case) in the product lifecycle management (PLM) process.

GARY OLHOEFT: Agreed.

KATINA MICHAEL: You are the first person I have engaged with who has convinced me to go further with this particular research endeavour. Save for some very sporadic papers in the press, and random articles in journal publications about electromagnetic interference issues, it was the Gizmodo article [xxviii] that my husband stumbled across citing you, that has validated our present conversation. It is time to take this very seriously now. We now have so many pacemakers, it is not just heart, it is brain as well. And I cannot even get a good figure for how many there are out there and I keep being asked but different sources state different things.

GARY OLHOEFT: They don’t know because they don’t track them [see introduction in [xxix].

KATINA MICHAEL: That is right but somewhat shocking to me because surely these numbers exist somewhere. And we have to track them. And I do not mean track the names of people. I do not really want people to be in a database of some sort because they bear an implant. I worry about potential hackers getting access to that, not from the privacy perspective alone but the fact that I do not wish to tip off potential predatory hackers “switching people off” so to speak, in the future.

GARY OLHOEFT: Sure.

KATINA MICHAEL: My concern is that the more of us who bear these implantables for non-medical reasons in the future, the greater the risks.

GARY OLHOEFT: There is a well-known story of someone who has had an internal insulin pump hacked, and an insulin dose was changed so that it killed them [xxx], [xxxi].

KATINA MICHAEL: I do wonder Gary if this all has to do with liability issues [xxxii]. There is simply no reason that companies like Medtronic should not be engaging the public on these matters. In fact, it is in their best interest to receive customer feedback.

GARY OLHOEFT: It’s definitely a problem and I don’t know what to do about that….

KATINA MICHAEL: So we need some hard core evidence that someone’s implantable has previously been tampered with?

GARY OLHOEFT: I’ve already raised the issue several times and Medtronic, my brain implant manufacturer just sent me the programmer’s manual for the patient. The original one I got was just a couple of pages that had to do with interference. The latest version is 16-18 pages in length on interference. And that is because of the questions I raised about interference and the evidence I showed them.

KATINA MICHAEL: Right.

GARY OLHOEFT: They still won’t admit that their device was defective in one case where I could prove it. My doctor believed me because I showed him the evidence, so he had them replace it at no charge.

KATINA MICHAEL: Okay. I have a question about this. Thank you for the information you sent me regarding your EEG as being logged by your DBS implant.

GARY OLHOEFT: It is not the EEG that I sent you, it is the measurement of the magnetic field from induced DBS current.

KATINA MICHAEL: It is the pulse?

GARY OLHOEFT: Right. The pulse height and the pulse frequency.

KATINA MICHAEL: Ok. So I saw the graph which indicated that every second pulse was being skipped.

GARY OLHOEFT: Right.

KATINA MICHAEL: So the question I have, is whether you have access to your EEG information? There was a well-known case of Hugo Campos who wanted access to his ECG information and last I heard he had taken to court the manufacturer who claimed they had the right to withhold this data [xxxiii]. He is more interested in data advocacy than anything else [xxxiv]. He was claiming it was “his” heart rate, and his personal biometrics, and that he had every right to have access to that information [xxxv].

GARY OLHOEFT: There are devices on the web that show you how to build something to get an ECG [xxxvi].

KATINA MICHAEL: Exactly. Hugo, even enrolled himself in courses meant for biomedical engineers to do this himself, that is hack into his own heart beat information, with the pacemaker device residing in his own body [xxxvii]. So he has been at the forefront of that. But the manufacturer is claiming that “they” own the data [xxxviii]. And my question to you is: Is your DBS data uploaded through some mechanism, like the heart pacemaker data is uploaded on a nightly basis and sent back to base [xxxix]?

GARY OLHOEFT: No, only when I visit the doctor’s office, is the only time they have access to it. Only when I go to the doctor.

KATINA MICHAEL: You mean to download information or to check its operation?

GARY OLHOEFT: Download information from the pack in my chest. Actually, they store it in there. They print it out in hardcopy because they are afraid of people hacking their computers.

KATINA MICHAEL: Yes.

GARY OLHOEFT: And this is the University of Colorado Hospital.

KATINA MICHAEL: Yes, I totally understand this from my background reading. I’ve seen similar evidence where hardcopies are provided to the patient but a lot of the patients like Hugo Campos are saying hardcopies are not enough. I should be able to have access at any time, and I should be able to tell someone my device is playing up, or look something is wrong [xl].

GARY OLHOEFT: Right. Remember how I told you about the interleave function. Well when they set it to the interleave setting for the first time, they didn’t do it right. And I woke up the next morning feeling like I had had 40 cups of coffee. It turns out it was running at twice the frequency it should have been and I could show that. So I called them up and said you’ve got a problem here and they fixed it right away. I figured I could measure it independently of the Medtronic device. That’s why I built my own AC wirewound ferrite core magnetometer to monitor my own DBS.

KATINA MICHAEL: Okay.

GARY OLHOEFT: But all the Doctor had was a program that told him whatever Medtronic wanted to tell him. I wanted more information than that, I wanted to actually see it so I built my own.

KATINA MICHAEL: So I saw your information that you would have had a product out on the market to help others but the iPhone keeps upgrading so I get that.

GARY OLHOEFT: It keeps changing faster than I can keep up with it.

KATINA MICHAEL: So I am going to argue that it is their responsibility, the manufacturer’s responsibility to provide this capability.

GARY OLHOEFT: I see no reason why they couldn’t, but I like the idea of a third party providing an independent measurement of whether the implant is working and measuring the parameters directly (pulse height, pulse width, pulse repetition frequency, etc.).

KATINA MICHAEL: So I am concerned on a number of fronts, and have been for some time. This in particular is not a huge ask if they are cooperative in the process of an incremental innovation. E.g. imagine if Apple collaborated with Medtronic or the other providers from Stryker and so forth, like Cochlear have collaborated with Apple. I think biomedical device manufacturers have to offer this as a service and in layman’s understanding for non-engineers. And it must be free and not cost the recipient anything. It is the only way to empower recipients of the pacemakers and for them to feel at ease, without having to go for a visit to a cardiac specialist.

GARY OLHOEFT: I told you about the experience of walking into a Best Buy and having their automated inventory control system turn off my DBS?

KATINA MICHAEL: Yes.

GARY OLHOEFT: Then I used my device to see what frequency it was operating at and then asked my doctor to change my DBS to a different frequency so that I could walk in and out of Best Buy. So the frequency range means the operator needs to have such things in mind. These inventory control devices are built  into walls in stores and malls, so you no longer know that they are even there or have any warning. But they are there.

KATINA MICHAEL: I know, they are unobtrusive.

GARY OLHOEFT: So there needs to be warning signs or other things like that. They seem to begin appearing in hospitals and imaging centres where they say “MRI in use” if you have a cardiac pacemaker or brain pacemaker device do not enter this room. But it is a rare thing still. I remember 20 years ago or so when they had “danger microwave oven in use”.

KATINA MICHAEL: Yes, I remember that.

GARY OLHOEFT: It is like we need a more generic reason than that.

KATINA MICHAEL: What is your feeling with respect to radio frequency identification (RFID)? Or the new payment systems using near field communications? Are they affecting pacemakers? Or is it way too low in terms of emissions?

GARY OLHOEFT: Well, no. There are wireless devices that are low-level that don’t bother me. For example, I have a computer with Wi-Fi, and that doesn’t bother me. That is because I’ve measured it and I know what it is. It is a dosage thing. If I stay nearby it the dosage begins to build up, and eventually it can get to a point where it could be a problem. Not necessarily for my DBS but for other things. Heart pacemakers are much closer to the heart so there is less of a problem. And the length of wiring is much shorter in heart pacemakers. I have a piece of wire that runs from my chest, up my neck, up over the top of my head, and back behind my eyes, and it is almost 18 inches long. That is part of the problem. They could have made that a twisted pair with shielding like CAT6 wiring but they didn’t and the Medtronic people need to fix that one.

KATINA MICHAEL: And Gary I spoke to some researchers last year in June who were talking about not having the battery packs so low, having it closer to the brain and smaller in size. Do you think the problem would dissipate somewhat if the battery pack was closer to the brain?

GARY OLHOEFT: Yes. But then the battery won’t last as long because it’s smaller.

KATINA MICHAEL: Yes, I know that is the issue.

GARY OLHOEFT: They are already trying rechargeable batteries but you spend all day at the charger- you get 9 hours of charging for only 1 hour of use.

KATINA MICHAEL: No, that is definitely not feasible.

GARY OLHOEFT: So my doctor told me that, and he recommended against that for me.

KATINA MICHAEL: Now here is another question that is a difficult one for you, I think. Do you find a conflict in your heart sometimes? You are trying to help the manufacturer make a better product and you are trying to raise awareness of the important issues that patients face, and yet you are relying on the very product that you are trying to get some response to. Have you ever written to Medtronic and said “This is my name and this is my story- would you allow me to advise you, that is, provide feedback to your design team?” [xli]

GARY OLHOEFT: There is a Vice President that is responsible for R&D who is both a medical doctor and an engineer… I wrote to him several times and never got an answer.

KATINA MICHAEL: Right.

GARY OLHOEFT: But I have spoken to Medtronic’s Chief Engineer that my device is misbehaving, you know with all those missing pulses. He was quite open about it. I also told him about the interleave problem at that time that it felt like I had had 40 cups of coffee and he said that was outside his area of expertise because he built the hardware but someone else programmed it. And you can find there are books out there that might tell you how to program these things. I’ve looked at them but I don’t agree with the approach they take. They never talk about interference. The default programming for this is 180 repetitions … it’s still the wrong place to start because in the US, 180 is a multiple (harmonic) of the powerline and close to the frequency used by many security systems and inventory control systems. See my talks on YouTube [xlii], [xliii].

KATINA MICHAEL: I am so concerned about what I am hearing. Concerned that the company is not taking any action. Concerned that we are not teaching our up and coming engineers about these problems because they have to know if they are not going to fall into the same pitfalls down the track as devices get even more sophisticated. I am also concerned that recipients of these brain pacemakers are not given the opportunity to provide proper feedback to design teams directly and that there is no indirect path in which to do this. A web page does not cut it. There are people like yourself Gary, who are willing and have relevant research expertise, whom these companies should be even welcoming onto their payroll to improve the robustness of their technologies. And I’ve already raised issues like those you are stating, with collaborators at the Consortium for Science, Policy & Outcomes at Arizona State University.

GARY OLHOEFT: Well, I’ve tried writing to various organisations and agencies and when possible, giving testimony to FDA, FCC and other agency requests for information.

KATINA MICHAEL: I think it is important to create a safe space where manufacturers, medical practitioners, patients, and policymakers come together to discuss these matters openly. I know there are user groups where patients go to discuss issues but that serves quite a different function, more of a support group. But until there is some level of openness then it will be likely that these issues will continue to cloud future developments. Gary, we need more people like yourself who have real stories to share, that are documented, together with peer-reviewed published research in the domain of interference and DBS. We should continue to write to them and also invite them to workshops and roundtable meetings, invite representatives from the FDA and FCC. What do you think about this approach?

GARY OLHOEFT: Yes, you can put me down for that. I’ll be involved.

KATINA MICHAEL: Great!

GARY OLHOEFT: Part of the problem is that the FCC authorisation says 9KHertz up to 300 GigaHertz. And these devices operate at below 200 Hertz. So the FCC has no regulatory authority over them, except as Part 15 devices. The FDA has no limit. From lasers down to direct current (DC). The FCC has nothing to do with it, so we need to get involved with the FDA. We need them to get to document things at any rate.

KATINA MICHAEL: I have a question also about the length of time that battery packs last in biomedical implantable devices? Could they last longer? One researcher who is known as a Cyborg Anthropologist was speaking to someone on a plane from one of these biomedical companies who said to her that the devices are replaced in 4-5 year periods so that the companies can make more money, like 40,000 dollars for each new device. What do you make of this?

GARY OLHOEFT: Possibly the case. But really, you don’t want to be making bigger battery packs, right? You just want to be able to make better battery technology. For example, do you really want a Lithium ion battery in your body because it lasts longer?

KATINA MICHAEL: Yes, you have a point there. What kind of battery do you have?

GARY OLHOEFT: I don’t know what kind it is. I do have the dimensions for how big it is.

KATINA MICHAEL: Yes, I saw the information you sent, 6x6x2 cm.

GARY OLHOEFT: It’s already presentable “looks-wise”, so I wouldn’t risk it.

KATINA MICHAEL: Ok, I agree with your concerns here. I was just worried about this remark because I have heard it before, replacement biomedical devices being a money generator for the industry [xliv].

GARY OLHOEFT: He must’ve been a marketing type.

KATINA MICHAEL: Yes, he was in sales engineering.

GARY OLHOEFT: Do you know how they have those wireless power transmitters now? The Qi system is the only one I have been able to test because I’ve been able to get through to them as there is a potential there for interference [xlv]. So they have given me a device with which to actually play with.

KATINA MICHAEL: That is great. And a very good example of what we are talking about should be happening.

GARY OLHOEFT: There is a Wireless Power Consortium of other people who work at different frequencies [xlvi]. They are the only ones that give me no response to my letters. So the wireless power transmission people need to be brought into the scope of this somehow.

KATINA MICHAEL: Could you elaborate?

GARY OLHOEFT: These are the people who create devices to recharge batteries for devices that require power transmission.

KATINA MICHAEL: Yes, mobility types of technology devices. And there are lots of those coming and most of them with little testing in the security space. I mean the Internet of Things is promising so much in this market space. I think the last statistic I read that the media caught wind of was 20 billion devices by 2020 [xlvii].

GARY OLHOEFT: You are looking at a house that could have every lightbulb, every appliance, every device in it on the Internet.

KATINA MICHAEL: Yes indeed, we just have to look at the advent of NEST.

GARY OLHOEFT: And yet they are wirelessly transmitting. It would be much better if they were hooked up using fibre optics.

KATINA MICHAEL: Agreed… I mean for me it is also a privacy concern with everything hooked up in the house to the Internet [xlviii]. Last year somebody demonstrated they could set a toaster alight in the IOT scenario [xlix].

GARY OLHOEFT: You know how Google has these cars driving around taking pictures everywhere?

KATINA MICHAEL: Yes, that is part of my research [l].

GARY OLHOEFT: And they also record whatever wireless systems they can get into that is not subject to a password, and then they can record anything that is in it. They lost a lawsuit over that.

KATINA MICHAEL: Yes. There is one that was handed down into the billions in Europe recently. But over the last several years they have been fined very different amounts in different markets. It was very ridiculous that they were fined only a few thousand US dollars in for example, South Korea! [li]

GARY OLHOEFT: That is a joke.

KATINA MICHAEL: At the IEEE Sections Congress last month I spoke to several young people involved with driverless cars. And I don’t know, they were very much discounting the privacy and security issues that will arise. One delegate told me: “it’s all under control”. But I do not think they quite get it Gary. I said to one of them: “but what about the security issues” and he replied: “what issues, we’ve got them all under control, I am not in the slightest concerned about this because we are going to have protocols.” And I pointed to the Jeep Cherokee case that some hackers got to stop in its tracks on a highway in the United States [lii], [liii]. One of my concerns with these driverless cars is that people will die, sizzling in a hot vehicle, where they have been accidentally locked inside by the “car”. And they don’t even have to have pacemakers, it is an issue of simply having a vehicle unlock its doors for a client to exit.

GARY OLHOEFT: There was the case of the hybrid vehicle that was successfully stopped and demonstrated on TV.

KATINA MICHAEL: Yes. And there was also someone wearing an Emotiv device that was steering their vehicle with their thoughts [liv]. I was giving a talk at Wollongong’s innovation hub called iAccelerate last week and I told them this very scenario. What if I hacked into the driver’s thoughts, and steered the car off a cliff?

GARY OLHOEFT: So what will they do between vehicles when the devices start to interfere with one another? 

KATINA MICHAEL: Yes, exactly! And when devices begin interfering with one another more frequently for who knows what reason?

GARY OLHOEFT: We have had situations in which cell phones have stopped working because the network is simply overloaded on highways, or blocked by landslides or just traffic congestion. The Broncos Football Stadium here is undergoing a six million dollar upgrade, just so they can get the Wi-Fi working, and now they are building it in to every seat. So they now have security systems like Airports do, and so I cannot go into the Stadium anymore because of my DBS. I couldn’t sit in a  light rail train either.

KATINA MICHAEL: So here is a more metaphysical and existential question. I am so fortunate to be speaking to you! You are alive, you are well in terms of being able to talk and communicate, and yet somehow this sophisticated tech also means that you have had to dull down your accessibility to certain places, almost living off the grid to some degree. So all of this complex tech actually means you are living more simply perhaps. What does that feel like? It really is a paradox. You are being careful, testing your devices, testing the Wi-Fi, and learning by trial and error on-the-fly it seems.

GARY OLHOEFT: Well I have a landline phone against my head right now because I know it doesn’t bother me. I cannot hold a cellular phone within 20 inches of my head.

KATINA MICHAEL: Hmm…

GARY OLHOEFT: So you are right. I mean there are a lot of places I cannot go to, like the School Library or the Public Library because of their system for keeping track of books. It has a very powerful electromagnetic pulse. So when I go to the Library, I go remotely via Virtual Private Network (VPN) on the Internet and fortunately I have access to that. I can also call the librarian who lets me in via the back door.

KATINA MICHAEL: So for me, in one case you are very free, and in the other case, somewhat not free at all. I really do not know how to express that in any other way.

GARY OLHOEFT: I see what you are trying to say but I would be less free without the device because it dramatically improves my functionality and quality of life, but also limits where I can go.

KATINA MICHAEL: I know. I know. I am ever so thankful that you have it and that we are able to talk so freely. I am not one to slow down progress but I am looking at future social implications. One of the things I have been pondering on is the potential to use these brain stimulators in a jail-like way. I am not referring here to torturous uses of brain stimulators, but for example, the possibility of using brain stimulators for repeat offenders in paedophilia for instance, or extreme crimes, whether we would ever get to the point where an implantable would be used for boundary control. Perhaps I am referring here to electronic jails of the future.

GARY OLHOEFT: That gets to be worrisome in a different way. How far are you away from that from controlling people. 1984 and all that [lv]. These DBS are being used now to help with obsessive compulsive disorder (OCD) and neural pain management.

KATINA MICHAEL: Yes, that is what we have pondered in the research we have conducted on uberveillance with MG Michael. So if we can fix the brain with an implantable then we can also do damage to it [lvi]. It is a bit like the internal insulin pump- if we can help someone receive the right amount of insulin, we can also reverse this process and give an individual the wrong amount to worsen the problem. Predatory hacking is something that will happen, if it is not happening already. That’s just the human condition that people would be dabbling with that kind of stuff. It is very difficult to talk about this in public because you do not wish to scare or alarm brain pacemaker or any pacemaker recipient, but we do need to raise awareness about this.

GARY OLHOEFT: That would be good because we don’t have enough people talking about these issues.

KATINA MICHAEL: I know. According to the NIH, there are 25 million people who have pacemakers and are vulnerable to cybersecurity hacks [lvii], [lviii]. That is a huge number. And it was you who also told me that 8% of Americans have some form of implant.

GARY OLHOEFT: Well it was 25 million in the year 2000.

KATINA MICHAEL: And the biggest thing? They must never ever link biomedical devices to the Internet of Things. Never. That is probably my biggest worry for the pacemaker community, that the companies will not think about this properly and they are going to be thinking of the ease of firmware updates and monitoring rather than safety of the individual. I envisage it will require a community of people and I am not short-sighted, it will mean a five-year engagement to make a difference to policy internal to organisations, and government agencies to listen to the growing needs of biomedical patients. But this too is an educational process and highly iterative. This is not like going down to your local mechanic and getting your car serviced, this is about the potential for things to go wrong, minimising exposure, and ensuring they stay right.

GARY OLHOEFT: I agree.

KATINA MICHAEL: Thank you Gary for your time.

 

Key Terms

Biomedical device: is the integration of a medical device and information system that facilitates life-sustaining care to a patient in need of a prosthetic function. Biomedical devices monitor physiological characteristics through mechanical parts small enough to embed in the human body. Popular biomedical devices include heart pacemakers and defibrillators, brain stimulator and vagus nerve stimulator devices, cochlear and retinal implants, among others. The biomedical device takes what was once a manual function in the human body, and replaces it with an automatic function, for example, helping to pump blood through the heart to sustain circulation.

Biomedical Co-creation: co-creation is a term popularised in the Harvard Business Review in 2000. Biomedical co-creation is a management design strategy, bringing together a company the manufactures a biomedical device and recipients of that device (i.e. patients) in order to jointly produce a mutually valued outcome. Customer perspectives, experiences and views in this instance, are vital for the long-term success of biomedical devices.

Deep Brain Stimulation: also known as DBS, is a neurosurgical procedure involving the implantation of a biomedical device called a neurostimulator (also known as a brain pacemaker), which sends electrical impulses, through implanted electrodes, to specific targets in the brain for the treatment of movement and neuropsychiatric disorders. DBS has provided therapeutic uses in otherwise treatment-resistant illnesses like Parkinson's disease, Tourette’s Syndrome, dystonia, chronic pain, major depressive disorder (MDD), and obsessive compulsive disorder (OCD). It is also being considered in the fields of autism and even anxiety-related disorders. The technique is still in its infancy and at the experimental stages with inconclusive evidence in treating MDD or OCD.

Federal Communications Commission: The Federal Communications Commission is an independent agency of the United States government created by statute to regulate interstate communications by radio, television, wire, satellite, and cable. Biomedical devices are not under the regulation of the FCC.

Food and Drug Administration: The Food and Drug Administration (FDA or USFDA) is a federal agency of the United States Department of Health and Human Services, one of the United States federal executive departments. The FDA is responsible for protecting and promoting public health through the control and supervision of a number of domains, among them those relevant to the biomedical device industry including electromagnetic radiation emitting devices (ERED).

Cybersecurity issues: are those that affect biomedical device recipients and place patients at risk of an unauthorised intervention. Hackers can attempt to hi-jack and administer incorrect levels of dosage to a recipient by penetrating proprietary code. These hackers are known as predatory hackers, given the harm they can cause persons who rely on life-sustaining technology.

Implantables: are technologies that sense parameters of various diseases and can either transfer data to a remote center, direct the patient to take a specific action, or automatically perform a function based on what the sensors are reading. There are implantables that have sensors that monitor, and those that facilitate direct drug delivery, or those that do both.

Participatory Design: is synonymous with a co-design strategy of development of biomedical devices. It is an approach that tries to incorporate various stakeholders in the process of design, such as engineers, medical practitioners, partners, manufacturers, surgeons, patients, ethics and privacy-related NGOs, end-users, to ensure that resultant needs are met.

Product Lifecycle Management: is the process of managing the entire lifecycle of a biomedical device from inception, through engineering design and manufacture, to service and disposal of manufactured products. Importantly, PLM is being extended to the ongoing monitoring of the embedded biomedical device in the patient, remotely using wireless capabilities.

 

References

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[xxiii] Nicole Lou, February 27, 2017, “Everyday Exposure to EM Fields Can Disrupt Pacemakers”, MedPage Today/CRTonline.org, https://www.medpagetoday.com/cardiology/arrhythmias/63433, Accessed: February 17, 2018.

[xxiv] Oxana S. Pantchenko, Seth J. Seidman, Joshua W. Guag, 2011, “Analysis of induced electrical currents from magnetic field coupling inside implantable neurostimulator leads”, BioMedical Engineering OnLine, Vol. 10, No. 1, pp. 94, https://biomedical-engineering-online.biomedcentral.com/articles/10.1186/1475-925X-10-94, Accessed: February 17, 2018.

[xxv] Oxana S. Pantchenko, Seth J. Seidman, Joshua W. Guag, Donald M. Witters Jr., Curt L. Sponberg, 2011, “Electromagnetic compatibility of implantable neurostimulators to RFID emitters”, BioMedical Engineering OnLine, Vol. 10, No. 1, pp. 50, https://biomedical-engineering-online.biomedcentral.com/articles/10.1186/1475-925X-10-50, Accessed: February 17, 2018.

[xxvi] Kelly Dustin, 2008, “Evaluation of Electromagnetic Incompatability Concerns for Deep Brain Stimulators”, Disclosures: J. Neurosci. Nurs., Vol. 40, No. 5, pp. 299-303, http://www.medscape.com/viewarticle/582572, Accessed: February 19, 2018.

[xxvii] Joel M. Moskowitz, September 2, 2017, “Hybrid & Electric Cars: Electromagnetic Radiation Risks”, Electromagnetic Radiation Safety, http://www.saferemr.com/2014/07/shouldnt-hybrid-and-electric-cars-be-re.html, Accessed: February 16, 2018.

[xxviii] Kristen V. Brown, July 4, 2017, “Why People With Brain Implants Are Afraid To Go Through Automatic Doors”, Gizmodo: Australia, https://www.gizmodo.com.au/2017/07/why-people-with-brain-implants-are-afraid-to-go-through-automatic-doors/, Accessed: September 15, 2017.

[xxix] National Institutes of Health, January 10-12, 2000, “Improving Medical Implant Performance Through Retrieval Information: Challenges and Opportunities”,  U.S. Department of Health and Human Services, https://consensus.nih.gov/2000/2000MedicalImplantsta019html.htm, Accessed: February 16, 2018.

[xxx] Dan Goodin, October 27, 2011, “Insulin pump hack delivers fatal dosage over the air”, The Registerhttps://www.theregister.co.uk/2011/10/27/fatal_insulin_pump_attack/, Accessed: September 15, 2017.

[xxxi] BBC Staff, October 4, 2016, “Johnson & Johnson says insulin pump 'could be hacked'”, BBC News, http://www.bbc.com/news/business-37551633#, Accessed: September 15, 2017.

[xxxii] Office of Public Affairs, December 12, 2011, “Minnesota-Based Medtronic Inc. Pays US $23.5 Million to Settle Claims That Company Paid Kickbacks to Physicians”, Department of Justice, https://www.justice.gov/opa/pr/minnesota-based-medtronic-inc-pays-us-235-million-settle-claims-company-paid-kickbacks, Accessed: February 19, 2018.

[xxxiii] Hugo Campos, January 19, 2012, “Fighting for the Right to Open his Heart Data: Hugo Campos”, TEDxCambridge 2011, https://www.youtube.com/watch?v=oro19-l5M8k, Accessed: September 15, 2017.

[xxxiv] Hugo Campos, July 15, 2012, “Stanford Medicine X ePatient: On ICDs and Access to Patient Device Data”, Stanford Medicine X, https://www.youtube.com/watch?v=K35enPVJki4, Accessed: September 15, 2017.

[xxxv] Emily Singer, “Getting Health Data from Inside Your Body”, MIT Technology Review, https://www.technologyreview.com/s/426171/getting-health-data-from-inside-your-body/, Accessed: September 15, 2017.

[xxxvi] Hugo Silva, June 22, 2015, “How to build a DIY heart and activity tracking device”, OpenSource.com, https://opensource.com/life/15/6/how-build-diy-activity-tracking-device, Accessed: September 15, 2017.

[xxxvii] Hugo Campos, March 24, 2015, “The Heart of the Matter: I can’t access the data generated by my implanted defibrillator. That’s absurd.”, Slate, http://www.slate.com/articles/technology/future_tense/2015/03/patients_should_be_allowed_to_access_data_generated_by_implanted_devices.html, Accessed: September 15, 2017.

[xxxviii] Jody Ranck, 2016, “Rise of e-Patient and Citizen-Centric Public Health”, Ed. Jody Ranck, Disruptive Cooperation in Digital Health, Springer, Switzerland, pp. 49-51.

[xxxix] Haran Burri and David Senouf, 2009, “Remote monitoring and follow-up of pacemakers and implantable cardioverter defibrillators”, Europace. Jun, Vol. 11, No. 6, pp. 701–709, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2686319/, Accessed: December 6, 2017.

[xl] Mike Miliard, November 20, 2015, “Medtronic enables pacemaker monitoring by smartphone”, Healthcare IT News, http://www.healthcareitnews.com/news/medtronic-enables-pacemaker-monitoring-smartphone, Accessed: September 15, 2017.

[xli] Staff. “How can we help?”, Medtronic, http://professional.medtronic.com/customer-support/contact-us/index.htm#.Wbua5dWCzIU, Accessed: September 15, 2017.

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[xliii] Gary Olhoeft, December 12, 2009, “Gary Olhoeft #2 Electromagnetic Interference and Medical Implants.mov”, Youtube: EMRPolicyInstitute, https://www.youtube.com/watch?v=XrETLgwPljQ, Accessed: February 16, 2018.

[xliv] Tim Pool, August 2, 2017, “When Companies Start Implanting People: An Interview with Amber Case on the Ethics of Biohacking”, TimCast, Episode 139, https://www.youtube.com/watch?v=UC8iQzjKQoU, Accessed: September 15, 2017.

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[xlvi] WPC, 2017, Wireless Power Consortium, https://www.wirelesspowerconsortium.com/, Accessed: September 15, 2017.

[xlvii] Amy Nordrum, August 16, 2016, “Popular Internet of Things Forecast of 50 Billion Devices by 2020 Is Outdated”, IEEE Spectrum, https://spectrum.ieee.org/tech-talk/telecom/internet/popular-internet-of-things-forecast-of-50-billion-devices-by-2020-is-outdated, Accessed: September 16, 2017.

[xlviii] Grant Hernandez, Orlando Arias, Daniel Buentello, Yier Jin, 2014, “Smart Nest Thermostat: A Smart Spy in Your Home”, Blackhat.com, https://www.blackhat.com/docs/us-14/materials/us-14-Jin-Smart-Nest-Thermostat-A-Smart-Spy-In-Your-Home-WP.pdf, Accessed: September 16, 2017.

[xlix] Mario Ballano Barcena, Candid Wueest, 2015, “Insecurity in the Internet of Things”, Symantec, https://www.symantec.com/content/en/us/enterprise/iot/b-insecurity-in-the-internet-of-things_21349619.pdf, Accessed: September 16, 2017.

[l] Katina Michael and Roger Clarke, 2013, “Location and tracking of mobile devices: Überveillance stalks the streets”, Computer Law and Security Review: the International Journal of Technology Law and Practice, Vol. 29, No. 3, pp. 216-228.

[li] Katina Michael, M.G. Michael, 2011, “The social and behavioural implications of location-based services”, Journal of Location Based Services, Vol. 5, Iss. 3-4, http://www.tandfonline.com/doi/full/10.1080/17489725.2011.642820?src=recsys, Accessed: September 16, 2017.

[lii] Andy Greenberg, July 21, 2015, “Hackers remotely kill a Jeep on the Highway- with me in it”, Wired, https://www.wired.com/2015/07/hackers-remotely-kill-jeep-highway/, Accessed: September 16, 2017.

[liii] Andy Greenberg, August 1, 2016, “The Jeep Hackers are back to prove car hacking can get much worse”, Wired, https://www.wired.com/2016/08/jeep-hackers-return-high-speed-steering-acceleration-hacks/, Accessed: September 16, 2017.

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[lv] Oliver Balch, November 17, 2016, “Brave new world: implantables, the future of healthcare and the risk to privacy”, The Guardian, https://www.theguardian.com/sustainable-business/2016/nov/17/brave-new-world-implantables-the-future-of-healthcare-and-the-risk-to-privacy, Accessed: February 19, 2018.

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[lvii] Staff. August 30, 2017, “Cyber-flaw affects 745,000 pacemakers”, BBC News, http://www.bbc.com/news/technology-41099867, Accessed: September 16, 2017.

[lviii] Carmen Camara, Pedro Peris-Lopez, Juan E. Tapiador, 2015, “Security and privacy issues in implantable medical devices: A comprehensive survey”, Journal of Biomedical Informatics, Vol. 55, June 2015, pp. 272-289, https://www.sciencedirect.com/science/article/pii/S153204641500074X, Accessed: February 19, 2018.

 

Citation: Excerpt from Gary Olhoeft and Katina Michael (2018), Product Lifecycle Management for Brain Pacemakers: Risks, Issues and Challenges Technology and Society (Vol. 2), University of Wollongong (Faculty of Engineering and Information Services), ISBN: 978-1-74128-270-2.

Kallistos Ware on Religion, Science & Technology

This interview with Kallistos Ware took place in Oxford, England, on October 20, 2014. The interview was transcribed by Katina Michael and adapted again in Oxford, on October 18, 2016, by Metropolitan Kallistos in preparation for it to appear in print. MG Michael predominantly prepared the questions that framed the interview.

Biography

Born Timothy Ware in Bath, Somerset, England, Metropolitan Kallistos was educated at Westminster School (to which he had won a scholarship) and Magdalen College, Oxford, where he took a Double First in Classics as well as reading Theology. In 1966 Kallistos became a lecturer at the University of Oxford, teaching Eastern Orthodox Studies, a position he held for 35 years until his retirement. In 1979, he was appointed to a Fellowship at Pembroke College, Oxford.

Do You Differentiate between the Terms Science and Technology? And is there a Difference between the Terms in Your Eyes?

Science, as I understand it, is the attempt systematically to examine reality. So in that way, you can have many different kinds of science. Physical science is involved in studying the physical structure of the universe. Human science is examining human beings. Thus the aim of science, as I understand it, is truth. Indeed, the Latin term scientia means knowledge. So, then, science is an attempt through the use of our reasoning brain to understand the world in which we live, and the world that exists within us. Technology, as I interpret it, means applying science in practical ways, producing particular kinds of machines or gadgets that people can use. So science provides the basis for technology.

What Does Religion have to Say on Matters of Science and Technology?

I would not call religion a science, though some people do, because religion relies not simply on the use of our reasoning brain but it depends also on God's revelation. So religion is based usually on a sacred book of some kind. If you are a Christian that means the Bible, the Old and New Testaments. If you are a Muslim, then the Old Testament and the Quran.

So science as such does not appeal to any outside revelation, it is an examination of the empirical facts before us. But in the case of religion, we do not rely solely on our reasoning brain but on what God has revealed to us, through Scripture and in the case of an Orthodox Christian, through Scripture and Tradition. Technology, is something we would wish to judge in the light of our religious beliefs. Not all of the things that are possible for us to do applying our scientific knowledge are necessarily good. Technology by itself cannot supply us with the ethical standards that we wish to apply. So then religion is something by which we assess the value or otherwise of technology.

Could We Go Insofar as Saying that Science and Religion Could be in Conflict? Or at Least is there a Point Where they Might Become Incompatible One with the Other?

I do not believe that there is a fundamental conflict between science and religion. God has given us a reasoning brain, he has given us faculties by which we can collect and organize evidence. Therefore, fundamentally all truth is from God. But there might be particular ways of using science which on religious grounds we would think wrong. So there is not a fundamental conflict, but perhaps in practice a certain clash. Problems can arise when, from the point of view of religion, we try to answer questions which are not strictly scientific. It can arise when scientists go beyond the examination of evidence and form value judgements which perhaps could conflict with religion. I would see conflict arising, not so much from science as such in the pursuit of truth, but from scientism, by which I mean the view that methods of scientific enquiry necessarily answer all the questions that we may wish to raise. There may be areas where science cannot give us the answer. For example, do we survive death? Is there a future life? That is to me a religious question. And I do not think that our faith in a future life can be proved from science, nor do I think it can be disproved by science. Equally, if we say God created the world, we are making a religious statement that in my view cannot be proved or disproved by science. So religion and science are both pursuing truth but on different levels and by different methods.

Are there Any Principles or Examples in the Judeo-Christian Tradition Which Point to the Uses and Abuses of Technology?

One precious element in the Judeo-Christian tradition is respect for the human person. We believe as Christians that every person is of infinite value in God's sight. Each person is unique. God expects from each one of us something that he doesn't expect from anyone else. We are not just repetitive stereotypes. We are each made in the image and likeness of God, and we realize that likeness and image, each in our own way. Humans are unique basically because we possess freedom. Therefore we make choices. And these choices which are personal to each one of us determine what kind of person we are. Now, any technology which diminishes our personhood, which degrades us as humans, this I see as wrong. For example, to interfere with people's brains by medical experimentation, I would see as wrong. Medicine that aims to enable our bodies and our minds to function correctly, that clearly I would see as good. But experiments that have been done by different governments in the 20th century, whether by Communism or in Nazi Germany, that I would see as an abuse of technology because it does not show proper respect for the integrity of the human person. So this would be my great test - how far technology is undermining our personhood? Clearly our freedom has to be limited because we have to respect the freedom of other people. And therefore, much of politics consists of a delicate balancing of one freedom against another. But technology should be used always to enhance our freedom, not to obliterate it.

How did the Ancient World Generally Understand and Practice Technology?

Interpreting technology in the broadest possible sense, I would consider that you cannot have a civilized human life without some form of technology. If you choose to live in a house that you have built yourself or somebody else has built for you, instead of living in a cave, already that implies a use of technology. If you wear clothes woven of linen, instead of sheepskins or goatskins, that again is a use of technology. In that sense, technology is not something modern, it came into existence as soon as people began using fire and cooking meals for themselves, for example. Clearly, the amount of technology that existed in the ancient world was far less than what we have today. And most of the technological changes have come, I suppose, in the last 200 years: the ability to travel by railway, by car, and then by plane; the ability to use telephones and now to communicate through the Internet. All of this is a modern development. Therefore we have an elaboration of technology, far greater than ever existed in the ancient world. That brings both advantages and risks. We can travel easily and communicate by all kinds of new means. This in itself gives us the opportunity to do far more, but the advantages are not automatic. Always it is a question of how we use technology. Why do we travel quickly from place to place? What is our aim? When we communicate with the Internet, what is it that we are wishing to communicate to one another? So value judgements come in as to how we use technology. That we should use it seems to me fully in accordance with Christian tradition. But the more complex technology becomes, the more we can do through technology, the more questions are raised whether it is right to do these things. So we have a greater responsibility than ever people had in the ancient world, and we are seeing the dangers of misuse of our technology, in for example the pollution of the environment. For the most part the ecological crisis is due to the wrong use of our technological skills. We should not give up using those skills, but we do need to think much more carefully how and why we are using them.

In What Ways has Technology Impacted Upon Our Practice of Religion? Is there Anything Positive Coming from this?

One positive gain from technology is clearly the greater ease by which we can communicate. We can share our ideas far more readily. A huge advance came in the fifteenth century with the invention of printing. You no longer had to write everything out by hand, you could produce things in thousands of copies. And now of course a whole revolution that has come in through the use of computers, which again renders communication far easier. But once more we are challenged: we are given greater power through these technological advances, but how are we going to use this power? We possess today a knowledge that earlier generations did not possess, quantitative, information, technological, and scientific facts that earlier ages did not have. But though we have greater knowledge today, it is a question whether we have greater wisdom. Wisdom goes beyond knowledge, and the right use of knowledge has become much more difficult. To give an example from bioethics: We can now interfere in the processes of birth in a way that was not possible in the past. I am by no means an expert here, but I am told that it is possible or soon will be for parents to choose the sex of their children. But we have to ask: Is it desirable? Is it right, from a Christian point of view that we should interfere in the mystery of birth in this way? My answer is that parents should not be allowed to choose the sex of their child. This is going beyond our proper human responsibility. This is something that we should leave in the hands of God, and I fear that there could be grave social problems if we started choosing whether we would have sons or daughters. There are societies where girls are regarded as inferior, and in due course there might arise a grave imbalance between the sexes. That is just one illustration of how technology makes things possible, but we as Christians on the basis of the teaching of the church have certain moral standards, which say this is possible but is not the right thing to do. Technology in itself, indeed science in itself, cannot tell us what is right or wrong. We go beyond technology, and beyond the strict methods of science, when we begin to express value judgements. And where do our values come from? They come from our religious belief.

How are We to Understand the Idea of Being Created in the “Image and Likeness” of God in the Pursuit of the Highest Levels and Trajectories of Technology?

There is no single interpretation in the Christian tradition of what is meant by the creation of the human person according to the image and likeness of God. But a very widespread approach, found for example among many of the Greek fathers, is to make a distinction between these two terms. Image on this approach denotes the basic human faculties that we are given; those things which make us to be human beings, the capacities that are conferred on every human. The image is as it were, our starting point, the initial equipment that we are all of us given. The likeness is seen as the end point. The likeness means the human person in communion with God, living a life of holiness. Likeness means sanctity. The true human being on this approach is the saint. We humans, then, are travellers, pilgrims, on a journey from the image to the likeness. We should think of the human nature in dynamic terms. Fundamental to our personhood is the element of growth. Now, the image then means that we possess the power of rational thinking, the power of speech, articulate language with which we can communicate with others; it means therefore reason in the broadest sense. More fundamentally, it means that we humans have a conscience, a sense of right or wrong, that we make moral decisions. Most fundamentally of all, the image means that we humans have God-awareness, the possibility to relate to God, to enter into communion with him through prayer. And this to me is the basic meaning of the image, that we humans are created to relate to God. There is a direction, an orientation in our humanness. We are not simply autonomous. The human being considered without any relationship to God is not truly human. Without God we are only subhuman. So the image gives us the potentiality to be in communion with God, and that is our true nature. We are created to live in fellowship and in communion with God the Creator. So the image means you cannot consider human beings simply in isolation, as self-contained and self-dependent but you have to look at our relationship with God. Only then will you understand what it is to be human.

At What Point Would Theologians or Ethicists Reckon we Have Crossed the Line from Responsible Innovation and Scientific Enquiry over into “Hubris”?

As a Christian theologian, I would not wish to impose, as if from a higher authority, limits on scientific enquiry. As I said earlier, God has given us the power to understand the world around us. All truth comes from him. Christ is present in scientific enquiry, even if his name is not mentioned. Therefore, I do not seek in a theoretical way to say to the scientist: Thus far and no further. The scientist, using the methods of enquiry that he has developed, should continue his work unimpeded. One cannot say that any subject is forbidden for us to look at. But there is then the question: how do we apply our scientific knowledge? Hubris comes in when scientists go beyond their proper discipline and try to dictate how we are to live our lives. Morality does not depend solely on scientific facts. We get our values, if we are Christians, from our faith. Modern science is an honest enquiry into the truth. So long as that is the case, we should say to the scientist: please continue with your work. You are not talking about God, but God is present in what you are doing, whether you recognize that or not. Hubris comes in when the scientist thinks he can answer all the questions about human life. Hubris comes in when we think we can simply develop our technology without enquiring: is this a good or bad application of science?

Is that Well-Known Story of the Tower of Babel from the Book of Genesis 11:1-9 at all Relevant with its Dual Reference to “Hubris” and “Engineering”?

Yes, that is an interesting way of looking at the story of the Tower of Babel. The story of the Tower of Babel is basically a way of trying to understand why it is that we humans speak so many different languages and find such difficulty in communicating with one another. But underlying the story of Babel exactly is an overconfidence in our human powers. In the story of the Tower of Babel, the people think that they can build a tower that will reach from earth to heaven. By the power of engineering they think they can bridge the gap between the human and the divine. And this exactly would be attributing to technology, to our faculty for engineering, something that lies beyond technology and beyond engineering. Once you are moving from the realm of factual reality to the realm of heaven, then you are moving into a different realm where we no longer depend simply on our own powers of enquiry and our own ability to apply science. So exactly, the story of the Tower of Babel is a story of humans thinking they have unlimited power, and particularly an unlimited power to unite the earthly with the heavenly, whereas such unity can only come through a recognition of our dependence on God.

Why Cannot or Should We Not Explore and Innovate, and Go as Far as is Humanly Possible with Respect to Innovation, if We Carry the Seed of God's Creative Genius within Us?

Yes, we carry the seed of God's creative genius within us, but on the Christian world view we humans are fallen beings and we live in a fallen world. Now, how the fall is interpreted in Christian tradition can vary, but underlying all understandings of the fall is the idea that the world that we live in has in some way or another gone wrong. There is a tragic discrepancy between God's purpose and our present situation. As fallen human beings, therefore, we have to submit our projects to the judgement of God. We have to ask, not only whether this is possible but whether this is in accordance with the will of God. That obviously is not a scientific or technological question. It is not a question of what is possible but of what is right. Of course, it is true that many people do not believe in God, and therefore would not accept what I just said about this being a fallen world. Nevertheless they too, even those who have no belief in God, have to apply a moral understanding to science and technology. I hope they would do this by reflecting on the meaning of what it is to be human, on the value of personhood. And I believe that in this field it is possible, for Christians and non-Christians, for believers and unbelievers, to find a large measure of common ground. At the same time, we cannot fully understand our limitations as fallen human beings without reference to our faith. So the cooperation with the non-believer only extends to a certain limited degree.

Can a Particular Technology, for Instance Hardware or Software, be Viewed as Being “Immoral”?

One answer might be to say technology is not in itself moral or immoral. Technology simply tells us what is possible for us to do. Therefore, it is the use we make of technology that brings us to the question of whether a thing is moral or immoral. On the other hand, I would want to go further than that, to say that certain forms of technology might in themselves involve a misuse of humans or animals. I have grave reservations, for example, about experiments on animals by dissection. Many of the things that are done in this field fail to show a proper respect for the animals as God's creation. So, it is not perhaps just the application of technology that can be wrong but the actual technology itself, if it involves a wrong use of living creatures, humans or animals. Again, a technology that involves widespread destruction of natural resources, that pollutes the world round us, that too, I would say in itself is wrong, regardless of what this technology is being used for. Often it must be a question of balancing one thing against another. All technology is going to affect people, one way or another. But there comes a point where the effect is unacceptable because it is making this world more difficult for other humans to live in. It is making the world unsuitable for future generations to survive within. Thus, one cannot make a sharp distinction between the technology in itself and how we apply it. Perhaps the technology itself may involve a wrongful use of humans, animals, or natural things; wrongful because it makes the world somehow less pleasant and less healthy for us to live in.

Is Religious Faith in Any Way Threatened by Technology?

If we assume a scientific approach, that assumes that humans are simply elaborate machines, and if we develop technologies which work on that basis, I do think that is a threat to our religious faith, because of my belief in the dignity and value of the human person. We are not simply machines. We have been given free will. We have the possibility to communicate with God. So in assuming that the human being is merely a machine, we are going far beyond the actual facts of science, far beyond the empirical application of technology, since this is an assumption with deep religious implications. Thus there can be conflict when science and technology go beyond their proper limits, and when they do not show respect for our personhood.

Can Technology Itself become the New Religion in its Quest for Singularitarianism - the Belief in a Technological Singularity, where we are Ultimately Becoming Machines?

Yes. If we assume that science and technology, taken together, can answer every question and solve every problem, that would be making them into a new religion, and a religion that I reject. But science and technology do not have to take that path. As before, I would emphasize we have to respect certain limits, and these limits do not come simply from science or technology. We have, that is to say, to respect certain limits on our human action. We can, for example, by technology, bring people's lives to an end. Indeed, today increasingly we hear arguments to justify euthanasia. I am not at all happy about that as a Christian. I believe that our life is in God's hands and we should not decide when to end it, still less should we decide when to end other people's lives. Here, then, is a very obvious use of technology, of medical knowledge, where I feel we are overstepping the proper limits because we are taking into our hands that which essentially belongs to God.

Can You Comment on the Modern Day Quest toward Transhumanism or what is Now Referred to as Posthumanism?

I do not know exactly what is meant by posthumanism. I see the human person as the crown and fulfilment of God's creation. Humans have uniqueness because they alone are made in the image and likeness of God. Could there be a further development in the process of evolution, whereby some living being would come into existence, that was created but on a higher level than us humans? This is a question that we cannot really answer. But from the religious point of view, speaking in terms of my faith as a Christian, I find it difficult to accept the idea that human beings might be transcended by some new kind of living creature. I note that in our Christian tradition we believe that God has become human in Christ Jesus. The second person of the Trinity entered into our human life by taking up the fullness of our human nature into Himself. I see the incarnation as a kind of limit that we cannot surpass and that will not be superseded. And so I do not find it helpful to speculate about anything beyond our human life as we have it now. But we are not omniscient. All I would say is that it will get us nowhere if we try to speculate about something that would transcend human nature. The only way we can transcend human nature is by entering ever more fully into communion with God, but we do not thereby cease to be human. Whether God has further plans of which we know nothing, we cannot say. I can only say that, within the perspective of human life as we know it, I cannot see the possibility of going beyond the incarnation of Christ.

Is Human Enhancement or Bodily Amplification an Acceptable Practice When Considered against Medical Prosthesis?

Human enhancement and bodily amplification are acceptable if their purpose is to enable our human personhood to function in a true and balanced way but if we use them to make us into something different from what we truly are, then surely they are not. Of course that raises the question of acceptable, what we truly are. Here the answer, as I have already said comes not from science but from our religious faith.

What if Consciousness Could Ever be Downloaded through Concepts Such as “Brain in a Vat”?

[Sigh]. I become deeply uneasy when such things are suggested, basically because it undermines the fullness of our personhood. Anything that degrades living persons into impersonal machines is surely to be rejected and opposed.

In the Opposite Vein, What if Machines Were to Achieve Fully Fledged Artificial Intelligence through Advancement?

When I spoke of what it means for humans to be created in God's image, I mentioned as the deepest aspect of this that we have God-awareness. There is as it were in our human nature a God-shaped hole which only He can fill. Now perhaps robots, automatic machines, can solve intellectual problems, can develop methods of rational thought, but do such machines have a sense of right or wrong? Still more, do such machines have an awareness of God? I think not.

What is so Unique about Our Spirit Which We Cannot Imbue Or Suggest into Future Humanoid Machines?

The uniqueness of the human person for me is closely linked with our possession of a sense of awe and wonder, a sense of the sacred, a sense of the divine presence. As human beings we have an impulse within us that leads us to pray. Indeed, prayer is our true nature as humans. Only in prayer do we become fully ourselves. And to the qualities that I just mentioned, awe, wonder, a sense of the sacred, I would add a sense of love. Through loving other humans, through loving the animals, and loving God, we become ourselves, we become truly human. Without love we are not human. Now, a machine however subtle does not feel love, does not pray, does not have a sense of the sacred, a sense of awe and wonder. To me these are human qualities that no machine, however elaborate, would be able to reproduce. You may love your computer but your computer does not love you.

Where Does Christianity Stand on Organ Donation and Matters Related to Human Transplantation? Are there Any Guidelines in the Bioethics Domain?

In assessing such questions as organ donations, heart transplants, and the like, my criterion is: do these interventions help the human person in question to lead a full and balanced human life? If organ transplants and the like enhance our life, enable us to be more fully ourselves, to function properly as human beings, then I consider that these interventions are justified. So, the question basically is: is the intervention life enhancing?

That would bring me to another point. As Christians we see this life as a preparation for the life beyond death. We believe that the life after death will be far fuller and far more wonderful than our life is at present. We believe that all that is best in our human experience, as we now know it, will be reaffirmed on a far higher level after our death. Since the present life is in this way a preparation for a life that is fuller and more authentic, then our aim as Christians is not simply to prolong life as long as we can.

Can You Comment on One's Choice to Sustain Life through the Use of Modern Medical Processes?

The question therefore arises about the quality of life that we secure through these medical processes. For example, I recall when my grandmother was 96, the doctors suggested that various things could be done to continue to keep her alive. I asked how much longer will they keep her alive and the answer was, well perhaps a few months, perhaps a year. And when I discovered that this meant that she would always have various machines inserted into her that would be pumping things into her, I felt this is not the quality of life that I wish her to have. She had lived for 96 years. She had lived a full and active life. I felt, should she not be allowed to die in peace without all this machinery interfering in her. If on the other hand, it were a question of an organ transplant, that I could give to somebody who was half her age, and if that afforded a prospect that they might live for many years to come, with a full and active existence, then that would be very different. So my question would always be, not just the prolonging of life but the quality of the life that would be so prolonged. I do not, however, see any basic religious objection to organ transplants, even to heart transplants. As long as the personality is not being basically tampered with, I see a place for these operations. Do we wish to accept such transplants? That is a personal decision which each one is entitled to make.

ACKNOWLEDGMENT

This interview transcript has previously been published by the University of Wollongong, Australia.

IEEE Keywords: Interviews, Cognition, Education, Standards, Internet, Technological innovation, Ethics

Citation: M.G. Michael, Katina Michael, "Religion, Science, and Technology: An Interview with Metropolitan Kallistos Ware", IEEE Technology and Society Magazine, 2017, Volume: 36, Issue: 1, pp. 20 - 26, DOI: 10.1109/MTS.2017.2654283.

The Screen Bubble - Jordan Brown interviews Katina Michael

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DangerousThings - Amal Graafstra Presents at ISTAS10

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Peter Mahy on S and Marper at ECtHR

Katina Michael interviewed Mr Peter Mahy of Howells LLP who represented S and Marper at the European Court of Human Rights

petermahy.jpg

Abstract: Mr Peter Mahy, Partner at Howells LLP and the lawyer who represented S & Marper in front of the Grand Chamber at the European Court of Human Rights was interviewed by Katina Michael on the 10th of October 2009 while she was studying towards a Masters of Transnational Crime Prevention in the Faculty of Law at the University of Wollongong. In 2010 Peter Mahy received the Legal Aid Lawyer of the Year award for his contribution to the field. Mahy received his honours law degree from Sheffield University and a Masters in Criminology from the University of Cambridge. He did his Legal Practice Course at the University of Northumbria, Newcastle and joined Howells in 1996, qualifying in 1998.

Keywords: S & Marper v United Kingdom, European Court of Human Rights, DNA, national database, proportionality, government, police, citizens

Katina Michael: Peter, thank you for the opportunity to conduct this interview with you. I will begin by asking you to distinguish between the collection and storage of DNA samples as opposed to DNA profiles? Or do you see both collection types are ‘equal’ in value?

Peter Mahy: I do distinguish between DNA sampling and DNA profiling. And in fact, the UK government is now also distinguishing between DNA samples and profiling, stating in their consultation paper, Keeping the right people on the DNA database, that samples will be destroyed. I think there is a particular distinction in that there is a fear with how samples may be used in the future, and how they might be analysed into the future. However to me personally, I think the collection and storage of DNA profiles as opposed to DNA samples is marginal and that both are of a huge concern.

Katina Michael: So the UK government has now publicly stated that they will destroy all samples on their national database?

Peter Mahy: Yes. So what they are saying now is that the DNA sample will be destroyed once it has been uploaded to a profile.

Katina Michael: Could you make a general comment about the British Police and Criminal Evidence (PACE) Act 1984 and how it has changed since its introduction?

Peter Mahy: So prior to 2001, the UK took the position that if you had your DNA taken on charge then it could be kept but if you were acquitted or the charge was not continued then it had to be destroyed. That was changed in 2001, so that DNA could be retained even after acquittal or if charges were dropped. And then the law again changed so that a DNA sample could be taken just on arrest, not charge. So the PACE in terms of the collection of DNA was significantly watered down.

Katina Michael: Is it true that PACE has been watered down so much that it has been applied to the collection of DNA samples for what society generally considers petty misdeeds? Was DNA collected first for violent crimes alone, and then later due to changes in PACE for minor misdemeanors?

Peter Mahy: So what has happened now, is about police powers with respect to recordable offences. And so every 6-12 months, the notion of what constitutes a recordable offence is redefined, and each time it gets redefined more offences are introduced into PACE, including more lower level crimes. So there has been a widening of the definition on what constitutes a recordable offence, to include more minor offences.

Katina Michael: Some analysts, early on (e.g. Ireland 1989) have argued that PACE did a good job of balancing the right of an accused person against the need for police to have adequate powers for law enforcement. Do you agree? Peter Mahy: I think the problem in the UK is that you see an increasing amount of criminal legislation. There has been 3000 changes to acts of parliament related to criminal legislation since the Labour government has been in, so there has been a creep to the erosion of civil liberties, a hemming in if you like, and so it seems to be a constant battle to keep the rights that were enshrined in PACE and the Human Rights Act.

Katina Michael: Do you see then, that the increase in police authority and powers represents a commensurate loss in the individual rights of UK citizens? Peter Mahy: So I think there is sort of a constant creep against civil liberties, and a constant battle to preserve them. And it is not clear cut. The UK enacted the Human Rights Act which was a massive step forward but that is under threat at the moment. There is a conservative party here that is saying they are going to take away the Human Rights Act. This could be seen a battle between the left and right all the time, trying to keep the rights that have been hard fought for. Katina Michael: As a solicitor representing persons in cases to do with civil liberties, how do you feel about the collection of DNA samples for crimes such as: petty misdeeds such as begging, or being under the influence of alcohol, and acting in a disorderly fashion?

Peter Mahy: I think an interesting issue in this whole case and this whole debate is that no one has really grappled with why DNA has been taken from a person at all. If a person is presumed innocent, I mean, why should you take their DNA on arrest or on charge? That lead into the question really. Is it right to take the DNA of a person for very low level offences? I think that no one has really grappled with this, of when do you draw the line and when should it be taken?

Katina Michael: I agree. I am actually interested in this very question. And perhaps more specifically I am interested in why more citizens do not speak up about the collection and long term storage of their DNA samples and profiles. Is it that citizens feel powerless? Or that they do not know how to fully participate in such a process of questioning?

Peter Mahy: I think that what has been absolutely amazing in this case is that when this case started out it was pretty much just me challenging the law. There was so little interest in the divisional courts, little interest in the Court of Appeal. Even at the House of Lords, the media was not really interested, not at all, so there was really no profile. When we got called from the European Court of Human Rights things began to get a little bit more exciting. And then there was the Nuffield report that was big publicity. And after the European Court there seems to be something on DNA in the press every day, and I think now it has a high profile. When you listen to documentaries on television here, or question time which is very popular, there is just about something on this every week because this really is a big issue now and it has come as a result of the stand that we took. And it seems that this is a major issue. In terms of people challenging government and taking it forward- I understand that Chief Constables are virtually inundated with daily requests at the moment and citizens voicing and demanding their rights.

Katina Michael: That is great to hear. And I do hope it sets an example for others to follow, causing a ripple effect through the Europe, and the rest of the world. Does the UK government actually have about 9% of all UK citizen DNA samples?

Peter Mahy: Yes it does. The figures that we have over here are that there are just over 5 million samples on the DNA database with about a 60 million population in the UK, so it is roughly between 8%-9%. I mean it is a particular problem here because these are the statistics that we have been given over the years by the Government, but they seem to change a lot and are quite unreliable, and that is one of the key problems. So I am rather skeptical about the UK figures that they are putting forward but it seems to be around the 5 million mark. Katina Michael: So when you compare the percentage of the UK population that has had their DNA sample stored (about 9%) on the national DNA database with other countries in the world (about 2%) do you believe that the collection is ‘grossly disproportionate’? Are we to believe that crime rates are so high in the UK, or there are other historical reasons to describe this kind of sampling?

Peter Mahy: I think the UK in the last few years has become fairly obsessed with crime and it has been a policy of the government to focus on this. And the government was particularly proud in this case to say that they were the vanguard of DNA and of the biggest database and therefore they would be able to conduct crime detection but without really thinking about the implications. So it was actually the Government who wanted to have the biggest database. I think the government also saw it as a cheap way of fighting crime, and cutting costs and trying to keep the public happy.

Katina Michael: And are the retention laws in the UK, post S & Marper bound to change?

Peter Mahy: This is quite a difficult question. The government has been doing as little as possible to comply with the judgment but the Council of Ministers is ensuring that they do comply with the judgment. So although to date, they have been doing as little as they can, in the end they are going to have to comply.

Katina Michael: Could you elaborate on the main issue the ECtHR case identified which was to do with the principle of “proportionality” and an individual’s right to respect for private life? Was this the key finding? What were some of the other findings from your viewpoint?

Peter Mahy: I think one of the important things to realise is that in the UK courts, we traveled from the Divisional Court, the Court of Appeal, and the House of Lords, and while in the UK it was stated that Article 8(1) the ‘right to private life’ was probably not even engaged. The feeling in the UK was very much that this was not a very important issue and why are you here for. And we had a fairly rough ride in the UK courts, some even commented that they could not see any basis for the case at all. In the ECtHR, they said clearly that article 8(1) was engaged and that was an important finding, from the UK point of view certainly that these rights have to be taken seriously. I think the other major finding was identification from the court that there was no independent system in the UK for review, and so you have to ask the Chief Constable to remove your DNA and simply that is not fair. That is something that the UK Government has tried to whitewash a bit, saying that well, we are going to keep that, and the Council of Ministers are saying well that is not good enough. So the finding that you should have the opportunity to have somebody else make the decision was important. But the main findings from the European Court were what is called the Article 8(2) right, which is the proportionality argument. They said that they were struck that in the UK there was a blanket policy so that everybody’s DNA was retained until they were 100 or until they died, no matter who they are or what offence they committed. And they found that the UK had overstepped what is called the margin of appreciation, that is the right for each country to determine its own laws and try to strike a fair balance. So all in all, they found that not only was Article 8 (1) engaged but that Article 8(2) on proportionality where states have a lot of lee­way that the UK had just gone too far and were adopting a blanket one-for-all policy.

Katina Michael: How do you think the United Kingdom have reacted to the ECtHR ruling? And have they reacted enough and at the required speed?

Peter Mahy: What happened in December 2008 the Home Secretary, who has of course now been chucked out, said there was going to be a white paper and that the matter was going to be fully debated with common sense standards. Not soon after that, around about February 2009 time, the Government said they were going to make regulations and secondary legislation so the matter would not be debated. And that is now in jeopardy because the House of Lords Committee said that would be an unlawful. The Government then introduced the consultation paper, Keeping the right people on the DNA database, in May of this year, and importantly, based their statistics from the Jill Dando Institute. The Jill Dando Institute recently said that the statistics that the consultation is based on were not finished. So that puts the whole consultation up in the air. And most importantly the Council of Ministers debated this on the 15th and 16th of September this year, and looked at the UK proposals and they basically said that for most of them that if they were enacted, then they would be unlawful. So I think the UK is in a very difficult position because 10 months on they have not complied with the judgment. And that they have put proposals forward that are based on flawed statistics and which the Council of Ministers have said would probably be unlawful.

Katina Michael: And you have mentioned the citizen response has been to inundate the Chief Constables with requests to remove DNA samples. How have you felt about the consultative process as of May 2009?

Peter Mahy: Part of the problem with the consultation process from my point of view, is that for a public consultation the Government provided a very long and a very complex document. It is not the sort of document that most members of the public can easily read. It was not in an easy format. There was no sort of response leaflet that had five or six questions that you could answer and send in. There was none of that, no guidance of how to respond. I think for many members of the public that would have been difficult to respond to. We were told that there were however about 500 people that responded. And of course, it was only people who knew about the consultation and could access and understand the document and then just send their response to it.

Katina Michael: So S & Marper’s DNA samples were removed after the ECtHR ruling? And what about the samples of other innocents? Were they destroyed or are they still on the database?

Peter Mahy: Our clients’ samples were destroyed in December 2008, almost immediately after we requested destruction, after the ECtHR ruling. What has been happening in the UK is that the Government, the Home Office, have been telling forces to send a standard letter out to people who have requested destruction of their samples, saying that the law and policy in the UK has not changed and therefore they would have to wait for a change in the law or policy. And that is what the majority of the people get. And I guess for people who cannot afford to pay privately or eligible for legal aid, they think that that is it, and they do not know any different. We have had quite a lot of clients who have come to us about their situation and we have been challenging it and to date all of our clients DNA samples have been destroyed and taken off but I think the problem is that the majority of people are not fully aware of their rights and are accepting what is said. They do not know how to challenge the government in what they are saying.

Katina Michael: What is the next step in this process? What will it take for the UK Government to destroy the samples?

Peter Mahy: The Labour Government here is very reluctant and I think in truth that they are hoping that this issue is just going to go away before the general election which is scheduled for the next six months or so. I am skeptical that they are going to do anything before then but they have Europe on their back and the Conservative Government which is interestingly seen as more right wing has said that they will comply with the ECtHR judgment, and will destroy the DNA samples of all innocents as will the Liberal Democrat Party. So it all depends on who is in power. But I think either way eventually the UK is going to have to comply with the judgment and destroy DNA samples of innocents or at least have a fairly limited retention period as they do in Scotland.

Katina Michael: Do you wish to comment about reports in the media that Mr S has somehow found his way back onto the DNA ‘archive’? Authorities would have us believe that Mr S’s details should never have been removed from the National DNA Database (NDNA) in the first place, but is the real story more about the ‘ease’ with which one’s DNA sample can end up on the N DNA?

Peter Mahy: I think in a way it is the Government trying to make the most of it, but it is a false premise really, because the point is that Mr S was arrested again, and his DNA was put back on the NDNA. But they did not need his DNA to get there, i.e., it made no difference that his DNA was taken off in the first place. As I understand it, DNA was not involved in either of the cases at all. In fact, DNA was not a feature of either case, so it would not have made any difference at all.

Katina Michael: So your response is basically, what is the point of collecting and storing DNA when it cannot add any value to the actual case in question?

Peter Mahy: Yes, in the case of our client, what did it matter, DNA played no part at all.

Katina Michael: So why have the UK adopted such a stance? Are they attempting to make their statistical inferences more robust when DNA is being analysed in criminal proceedings?

Peter Mahy: Certainly the UK’s policy has always been that they have wanted the largest database possible. I think if it was not for the ECtHR ruling, they would have gone for a fully fledged national DNA database.

Katina Michael: So I gather from my reading that the motivation for such a national DNA database has to do with providing a greater probability and confidence level between the DNA evidence found at the scene of a crime and a match with the DNA sample of a suspect and to eliminate such problems linked to the need to conduct sub-group sampling?

Peter Mahy: Many of the commentators now- and this is where we are getting into more scientific discussion and more areas of argument- are saying that they consider four to five million samples to be the largest for an accurate DNA database. And that if your database size goes over five million that your chances of getting false hits and false readings increase. I was reading one article that was discussing how the chances of false hits is now increasing as a result of increasing records on the NDNA.

Katina Michael: What do you think the ‘Father of DNA’ thinks about all this?

Peter Mahy: Well in fact, Alec Jeffreys has gone on record over the last few years saying that the DNA samples of innocents should not be kept and should be destroyed.

Katina Michael: Could you make a comment about the collection of DNA samples from:

a) Children?

b) Persons under the age of 18?

c) Or of particular ethnic/racial/familial backgrounds and what impact this might have in a court of law?

Peter Mahy: This was something we relied on the UN Convention on the Rights of the Child and the European Court certainly saw that as a big issue, and that children are entitled to special consideration. And we also made the discrimination argument that there are so many more people of ethnic backgrounds than Caucasians as well. But in the end the ECtHR did not need to rule on that matter at all, as they ruled on the importance of a right to private life. Personally, I am not sure that there is a huge difference, and personally I think that the same rules should apply to everybody. If you are innocent, then it should not really matter what age you are, or what background you are from.

Katina Michael: So how is the Government proposing to change DNA retention laws by age and type of offence?

Peter Mahy: So there are proposals from the Government to that end. For a serious violent, sexual or terrorism-related offence, the DNA of a child would be retained for 12 years. For children between the ages of 10 and 18 years who are arrested but not convicted on one occasion, DNA is retained for 6 years then deleted on the 18th birthday, whichever happens first. And if a child is arrested on 2 occasions, their DNA is retained for the full 6 year term. So yes, a different regime for the retention of DNA for children.

Katina Michael: What would it take to raise the profile of the importance of removing DNA samples from public databases, especially in the European Union or Council of Europe states? Will it take more cases like S & Marper to front up to the ECtHR or various EU states to remove samples from databases? What strategy would you adopt?

Peter Mahy: I think we now have the judgment and it is now in the political debate and the Government will have to respond to the consultation submissions shortly. And after the ECtHR judgment the Government has been under constant pressure. There will be more test cases from people like me. I see the next test case could be somebody who tries to have their DNA destroyed only to be told by the Chief Constable that it cannot. At the moment the Chief Constable is relying on guidelines from 2006 which says the House of Lords ruling is the law. And I think that that is just crazy. The Government is not even taking into account the ECtHR judgment really. I think there would also be an interesting test case on whether it is lawful to take DNA on arrest given that there is no evidential threshold at that stage and I think there is going to be another test case on the issue of keeping DNA for ever and for minor crimes. I think there is going to be lots of test cases as well as the Council of Ministers driving the political debate, so altogether really.

Katina Michael: Could you make a comment on the collection and exchange of DNA data as a result of the Prüm Treaty? Do you see this as magnifying the problem of collecting DNA samples of innocents and those acquitted?

Peter Mahy: To be honest, we never got to the bottom of how this works in practice. For instance, if someone has there DNA sample taken in the UK and a DNA profile is exchanged between EU states and then a request for deletion is made and granted in the UK, who knows where your information has been saved? Has it been saved in different places all around the world? I am not sure even the Government has a handle on what they have been doing with this information. Katina Michael: Yes the loss of information is a critical issue for such sensitive databases.

Peter Mahy: I do not know if you heard but in the UK last year, there was a database of DNA profiles with known sex offenders sent from the Dutch police to the UK). Somehow the disc was misplaced and found over a year later. There has been a whole history here in the UK of data going missing, including prison inmate details, bank account details etc. The point is that mishandling of such information is possible. The matter seems to have gone quiet now but this seems to be a huge issue. It seems to me however that there are even more fundamental issues. Say for instance we are sharing DNA profiles with country X who is currently considered our ‘friend’ and then 10-20 years down the track they become our ‘enemy’. This then becomes a serious terrorist threat. These DNA samples and profiles can then be used against us and to cause huge threat against us.

Katina Michael: Given my background is in information technology, I do read so many articles on the losses of data such as disks left behind at train stations and airports, unencrypted data being intercepted, and the theft of laptops of very important persons. But I really had not gone to that next step to consider the way in which DNA profile data in particular, could be used to attack and to make the most of a potential terrorist act. That is fascinating-

Peter Mahy: Yes, it is pretty scary... You could just imagine that even on 5 million samples in the UK getting into the wrong hands and from those records you could determine which type of chemical or biological warfare could wipe out 90% of the UK population but would allow other states to be somewhat unaffected. There would be a significant danger.

Katina Michael: When government authorities quote statistics related to the number of cold cases solved using DNA evidence/samples, or the number of successful convictions based on the process of matching DNA profiles, are we really to believe them?

Peter Mahy: Well, again, the government statistics are extremely unreliable. I think an important thing to note is that from the Council of Ministers discussion a couple of weeks ago, the information they have actually been given from the Government themselves is that of the 850000 or so samples that are potentially from innocent people that 350000 are from people who have been convicted or acquitted. And from those 500000 samples that are left they do not know what happened to those individuals. So when you have a database with 10% of samples of which the Government has no idea of whether those people were convicted or innocent then I think that just shows how very statistically unreliable the data sources are.

Katina Michael: I would like you to comment on the use of force in obtaining intimate and non-intimate DNA samples without the suspect’s consent? What does ‘refusal without good cause’ actually mean in the United Kingdom with respect to PACE? Do you know of any cases where this has occurred and innocent person has not been incriminated? The exact phrase that is used in s. 62(10) is: “Where the consent by the detained person is refused without ‘good cause’, the court, and the court and jury, may draw inferences that may amount to corroboration of any evidence against the person in relation to the refusal s. 62(10).”

Peter Mahy: I can answer that in a slightly different way using an example of a case that I recently dealt with where I had a very well respected client in the community, who with his wife was arrested for stealing their own car. At the police station they were asked for their DNA sample and they refused and it was taken by force. We have been battling to get that DNA destroyed for 2 years or so, and only post Marper and only recently, in fact only in the last month or two, we finally got it destroyed. And to those people I think that the whole way it was approached by the police initially in taking the DNA sample by force from somebody who clearly had not committed an offense and who were not charged at the police station and were let go after that, simply to boost the number of people in the database, is horrific and unnecessary. And the battle for 2 years after, alienates people and I think that is why the Government has gone wrong on this issue because you should be policing by consent rather than by coercion. Those two clients before this ordeal were engaged helping the police and very appropriately will now be very reluctant to help the police and there are hundreds of thousands of other people who feel the same way.

Katina Michael: Perhaps it is a good time now to ask you about initiatives such as the Innocence Project in the United States (1992) and the Innocence Network in the United Kingdom (2004). Do you believe that increasingly DNA evidence is rightly being used as a critical component of many judicial proceedings? Or do you think it is being overused? That is, DNA evidence can be used to both inculpate and exculpate a suspect; that DNA evidence has the power to convict the guilty or exonerate the innocent in criminal litigation. Do you have any thoughts on this process?

Peter Mahy: Well, I can see that DNA is very useful in a criminal case and it may solve a crime or prove that somebody is innocent. In the UK now, DNA is routinely used in family cases related to issues of paternity. In fact, DNA is used routinely in immigration cases. But it seems to me though that the essential issue to grapple with is when DNA should be taken without consent because that is an interference of people’s rights, and so should it be taken on arrest or should it be taken when you are charged, or only voluntarily? And that is just the dividing line. I think there is a big mix up and a lot of false prophecy in the UK in how DNA should be used. The UK Government has always proclaimed the importance of DNA, but this question was also answered in the European case. Well that is not disputed. The question is, when you should take DNA from people who do not wish to give it?

Katina Michael: I have just finished reading Ron C. Michaelis, Robert G. Flanders and Paula H. Wulff, A Litigator’s Guide to DNA: from the Laboratory to the Courtroom (2008) who state on p. 99 that the “ideal DNA database would contain the profiles of every person in the country” [United States]. But they go on to claim that “[a] database such as this will obviously never be compiled, so forensic analysts must use the data that have been collected, from a tiny portion of the population, to estimate the frequency of an allele in the larger population.” Do you believe as Michaelis et al. do that the UK will never seek to implement a national DNA database? Is the idea as far-fetched as it might seemingly initially appear?

Peter Mahy: I think if we had not won the S & Marper case that this would have happened in the UK. There was mention in the UK courts that the Government was mostly relying on the principle that DNA was taken at the police station, that it was a historical fact and that it was not a big deal. And there were some reports that suggested that DNA samples should be taken from babies at hospitals when they were born because at that point the procedure could be done fairly easily. And of course, you would not need to do it for everybody because of the capability to conduct familial searching with DNA. For instance, 15 to 20 million samples would probably be enough to identify almost anybody in the UK. It might not be that person but it might be their brother. And that clearly was attractive to the UK and I think that that might have come. But now because of the ECtHR judgment that is clearly in retreat now. I mean the Government here is proposing IDentification cards with biometric data on them. I think that is on very shaky ground now. My best guess now is that the Government is not going to go ahead with that, apart from the fact that they are fairly bankrupt. So initially yes, I think the idea was of a blanket coverage DNA database and that probably would have happened but I think now it is unlikely.

Katina Michael: Do you see the collection and storage of biometric data like fingerprints to be equally harmful as the collection and storage of DNA samples or profiles?

Peter Mahy: I do not see fingerprints as being as big an issue as DNA. I think with DNA it is the fear of future uses that worries people and people do not understand exactly what DNA is and what it could be used for. Whereas fingerprints are seen more as a signature and that less pieces could be extracted from it. But I think generally, especially with my clients, they are less concerned about fingerprints or a photograph than they are about DNA.

Katina Michael: I have a PhD student that is co-supervised by me and someone from the medical school that is working on the secondary uses of patient medical data including for instance the use of blood samples to aid in the discovery of cures. Her main aim is to develop a patient consent matrix. What I can say I am witnessing is a major push by the medical field, including medical practitioners and associated suppliers of medicines such as pharmaceutical companies to gain access to large amounts of what was once considered confidential databases in the hope that they can create medical breakthroughs. And there are also now quite a few health databases that contain hundreds of thousands of records and have been created voluntarily by the community adding their personal details to registers. Is it possible that we get to the point that the medical field almost overtakes the criminal/civil proceedings collection of DNA samples?

Peter Mahy: I was talking to some doctors in Leeds about this very topic earlier in the week. Doctors in hospitals are collecting blood samples every day for one thing or another. And I think there is a very important distinction they mentioned to me is that they have to ask the person if they consent at the start. And they also have the right to withdraw their consent and their details and samples taken off entirely in the future. And of course what we are talking about here is taking the DNA without consent and keeping them forever never bothering to take them off. But to me it seems that the big difference is consent.

Katina Michael: And how we would achieve true consent? Would you ask the individual periodically whether they consent to their DNA data being stored on a medical database for medical discovery? Do you ask them every three months? This is a question we are finding hard to answer.

Peter Mahy: In the medical field of course, it may be, I do not know, say in three or four years time that they decide that DNA samples are going to be sold to insurance companies who are very interested in this data especially if you are going to be ill down the track. But at that stage a person might think, I do not want to be on that medical database anymore and I want to be taken off. I think those are the sort of scenarios that will cause the major development because then they could withdraw their consent. For instance, imagine a company who obtains this data and later turns out to be engaged in unethical practices, how would you then withdraw your consent. Again, to me, a major issue here is that you may give your DNA to a limited company who then sends it abroad. I do not really see how you can really control it and to ensure that if you withdraw consent at a later date; that you can indeed really get your DNA back or get it destroyed from the database?

Katina Michael: I am really interested in the role that self-interest groups have had in the S & Marper case from the very beginning to the present time. I have come up with the following groups, and I would like you to let me know if any are missing to your recollection. In no order of importance I have come up with the Nuffield Council on Bioethics, Liberty, GeneWatch, StateWatch, the Genetic Interest Group, and the NDNA Ethics Group, Amberhawk, and Where is Your Data.

Peter Mahy: There is a letter that was written by the interest groups to the Council of Ministers about a fortnight ago. And I think that all of these groups are important because they will influence particular decisions. You should add to your list Privacy International UK, Black Mental Health UK, Action on Rights for Children, and No2ID.

Katina Michael: One thing I am trying to do is to look at the S & Marper case from the view of different stakeholders- the government and policymakers, the citizens, the media, the academic papers that have been written on the S & Marper case such as case comments and notes, and of course, the self-interest groups that are lobbying on behalf of the rights of citizens.

Peter Mahy: To be perfectly honest what happened, is that while we were taking the case through the courts in the UK, we were on our own. In the Divisional Court there was little media interest, and nobody was interested. In the Court of Appeal, Liberty tried to intervene but they could not come to the hearing. In the House of Lords, again, Liberty intervened and they were threatened by the Government that if they did and they came to the hearing there would be costs against them and Liberty was fearful of that. So in fact, Liberty did not come to the House of Lords. So we were really the only ones against the Police and the Government and we were hugely outgunned. It was not until we got to the European Court that Liberty put some submissions in, and importantly Privacy International UK put in some really good work but for the actual ECtHR hearing we were on our own again. There was seriously little back up then, but now that the judgment has come to pass there is a lot of interest from interest groups who are doing good work. Non-government organizations have a right to participate in the Council of Ministers debate, and that is why now they actually have some power.

Katina Michael: Peter, could you tell me how to describe your exact role on the S & Marper case?

Peter Mahy: The solicitor, who acted for the claimant in the S & Marper v United Kingdom case.

Katina Michael: And can I ask, why Mr S and Mr Marper? How did it come to pass that you chose these two individuals? Had they approached Howells LLP? Peter Mahy: So the reality was that South Yorkshire Police had written a letter to all solicitors saying that because the law had changed they were going to keep all DNA samples of people. In other words they were saying- “[s]top asking for the DNA samples to be destroyed.” And then when the email came around and I read this letter, I immediately thought, well that does not really sound right and we should challenge it. And very quickly I had Mr S and Mr Marper in the office who had written to the police asking for destruction of their DNA samples. I think till that point, I do not really think anyone else had really thought about it as the legislation in the UK was just out, and few perhaps saw it as an issue and worth challenging.

Katina Michael: Just as a final summary Peter, what were the tangible/intangible or explicit/implicit impact(s) of the ECtHR ruling on the United Kingdom?

Peter Mahy: Tangible is that the ECtHR ruling has created change and at the moment there is a lot of debate, a lot of talking between parties here. I think in a way it has drawn a line in the sand, and hopefully in the next 10-20 years we will look back and say that was an important case. That that was a case, where we took a good look at what was going on in the UK and put a stop to the erosion of rights.

Katina Michael: Any final comments that you might have on this S & Marper case? 

Peter Mahy: I think one thing that is important to mention is how poorly funded we were. We were granted some legal aid from the European Court which was 2,613 euros. That was for myself and the barrister and included traveling expenses. So we were probably looking at something like 600-1 ,000 euro for the both of us, some 200-300 pounds each. It was an immense amount of work- boxes and boxes of documents. But at the same time, the Government lawyers were probably getting paid about 200-300 pounds per hour for the case. And we expect that the UK Government spent hundreds of thousands of pounds, if not millions of pounds just on the hearing. We made a request to freedom of information from the UK Government and they refused them, on the basis that this information was commercially sensitive. I think this just highlights the inequality of people trying to win a case versus the Government and the State. And now that we won the case we got paid fairly reasonably but we are sure, nothing like what the Government got paid. I think it shows the importance of people taking a stand but it is very difficult to communicate that lesson.

Katina Michael: Well, I for one, having researched this case over the last 12 months, am quite in awe of what you have achieved. And I am unsure if you perceive the great importance of S & Marper for other nation states, but this case ruling will set a precedent for others to follow. Thank you for conducting this interview with me.

Serafin Vilaplana - The Baja Beach Club IT Manager

Well, the owner-manager of the Baja Beach Club visited the United States, and he got the idea while traveling over there and hearing about the trial of the chip implant that was linked to electronic health records. These implants were first being used for the elderly and the sick.

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Gary Retherford - the Microchip Implant Consultant

When I saw the product that they had I became fascinated with it. Even more fascinated when I realised after, I guess, maybe through the Google searches that I had done, and I came across Verichip – and so many hits associated with some of the evangelicals slants in the market … and I think that kind of intrigued me, because I’m thinking: “Wow, where’s this coming from?” So I actually had reached out to Verichip to find out about their asset tracking and simultaneously was going to ask about their implantable microchip product for access control because I was in the access control business. Interesting enough though, at the very same time and I’m talking almost down to the minute, I was getting ready to have lunch with the owner of the company called Citywatcher and I reached out to them because they were offering this service of doing video surveillance on servers and they were doing some work in the city of Cincinnati. So as I literally had my phone in my left hand getting ready to introduce myself to a contact at Verichip, I was reaching out with my right hand to shake the hand of the president and little did I know at that point that roughly a year later, what was going to eventually end up happening. So then I began talking to Verichip. We talked about their asset tracking component for the art, but I also started to ask them about their access control system and when I was beginning talking to them and their sales people/person that they had in charge, I realised that they had a little bit of a flaw, in my opinion, in the way they were trying to market their product. What they were trying to do was create a whole access control system and sell it as an entire system and I said, “Well, I have a suggestion for you. My suggestion is that in doing that you just take the reader and they can integrate with everybody else’s access control.

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Conversation with a Minor about Chips and Things

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Judith Nachum - The Holocaust Survivor

I always thought that Zyklon B was the first, and that the gas chambers started in Auschwitz. Not so. First they killed “in” Germany all the crazies, all the “sub-normal” people, all the sick ones like mongoloids. And they had people like this in the camps, and in the beginning they would take them by train from the camp back to Germany and put them in a special building with cellars, which they called Sunshine House, and they killed them with carbon-monoxide. And then someone thought that carbon-monoxide would be a good way to kill the Jews, and they started by putting the Jews on trucks in Russia, already half-dead and they finished them off in the trucks. But you needed vehicles and so it was costly to them, and then only, they said in this one place in Auschwitz where they were holding Polish prisoners, political prisoners who they had killed (some of whom were hung)… One Nazi SS opened the door in one of these old buildings (Block 11), and found a whole heap of old clothing, hundreds of pieces, that were worn by the Polish prisoners. And on the door, was the sign of the skull and crossbones which represented poison and infection. So you had these little platelets that you would light up the gas with, and they were used to kill vermin, it killed all these things. And that gave them the idea- vermin here, and here you’ve got the vermin, the Jews. And that is how they made these gas chambers. That was the Zyklon B, and this is how they did it.

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Kenneth Lea - The Alzheimer’s Carer

Well, I feel that in the specific case of the dementia sufferers, if the carer or the person responsible for the dementia sufferer is willing, if they won’t wear a device that is removable, I feel that an implant is the only answer. Not only for the convenience of the carer but also for the subject’s safety. I’ve got great faith in the GPS system- as it is the best system of locating people over a wide area, whereas the FM band has a limited range on that pendant. GPS is global (figure 5). It would mean given the right situation, which would be no worse than the FM system, if the situation is right for the GPS, sufferers could be pinpointed within a meter or so and it would involve only sending one police car to pick them up, rather than have the whole force mobilized. Particularly in places like Sydney which is such a vast metropolis with numerous forms of transport where people with dementia could move over kilometers within a very short space of time. You’d never find them unless they were locatable by GPS.

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Kevin Warwick - The Professor who has Touched the Future

Very good question. I did get a surge, it was an electrical current. In terms of how it actually felt, this is going to be a silly answer, but this is how it is- it felt like my wife was communicating with me. It's like you are listening to me on the phone now, how does it feel like to hear me talking? So when I received the first pulse knowing that was from my wife, but my brain knew that it was my wife, the signal that I was looking forward to.

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Ian Angell - The Economist

And all security fails. It may fail catechismically, catastrophically or it could be just little failures. But little failures damage individuals catastrophically. The nation may be fairly secure but individuals become very damaged.

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Christofer Toumazou - The Biomedical Pioneer

And that’s where I come to a halt, because effectively I think that a deaf person that has heard and lost their hearing and they can get their hearing regained is fine. But actually trying to give someone that can hear, super hearing is not fine.

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Allan Brimicombe - The Rise of the New Geographer

Similarly, on your mobile phone you can use an application where you can have your buddies marked out to know which of them are nearby at a particular moment to find them. And that is pretty much like tracking children. Another interesting one is mobile gaming which involves knowing where individuals are as part of the game. And I think, the most extraordinary one I’ve seen is from Finland in the North of Lapland, an application where a dog is fitted with a GPS and mobile phone device so that the owner of the dog from the nature of the dog’s bark can know whether or not the dog is out of range and by speaking to the dog via the mobile device and direct what the dog has to do.

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