Sheffield, UK, March 2020. CREDIT: <a href="">Tim Dennell</a> <a href="">(CC)</a>.
Sheffield, UK, March 2020. CREDIT: Tim Dennell (CC).

Health Data, Privacy, & Surveillance: How Will the Lockdowns End? with Effy Vayena & Jeffrey Kahn

Apr 24, 2020

How should we think about privacy and government surveillance during the COVID-19 pandemic? Johns Hopkins' Jeffrey Kahn and ETH Zurich's Effy Vayena discuss health data and government surveillance, focusing on contract tracing apps in Europe and immunity certificates in the United States, with Carnegie Council President Joel Rosenthal in this virtual webinar.

JOEL ROSENTHAL: Good afternoon, and welcome to the Carnegie Council lunchtime webinar series. Like many of you, we're working remotely these days, so we're using this time to reach out to our Senior Fellows, friends, and constituents to talk about the important issues in ethics in public life that are at the heart of the Council's work. Thank you all for joining us.

Today's topic is top of mind for all of us following the pandemic. The title of our hour-long conversation will be "Health Data, Privacy & Surveillance: How Will the Lockdowns End?" I can't promise you we'll answer this question within the one hour we have together, but I can promise you a deeper understanding of the values and interests that are at stake as well as a clearer picture of the tradeoffs that inevitably are coming our way.

Our guests today are two experts in bioethics and public health. Effy Vayena is professor of bioethics at the Swiss Federal Institute of Technology in Zurich (ETH Zurich), and Jeff Kahn is director of the Berman Institute of Bioethics at Johns Hopkins University. Both Effy and Jeff have considerable experience working at the intersection of ethics and public policy and doing so in real time. Both have worked at the global level, the national level, and the community level in connecting scientific knowledge to rapidly emerging governance challenges.

We have asked Effy and Jeff to update us on their recent efforts addressing issues in contact tracing and the potential for immunity certifications, and we have also asked them to reflect on how these tools are being approached differently in different countries.

Before turning to our speakers, just a word about our format. We have asked each speaker to talk for about 10 minutes. After that, we'll have a dialogue between them for about ten minutes, and the back half of the program will be interactive.

With that introduction, I'll turn things over to Effy, who is coming to us from Zurich.

EFFY VAYENA: Hello. Thank you, Joel, for the invitation. It's a pleasure to be with you virtually today.

In my 10 minutes I will just share some thoughts about how we came to be thinking about these topics and where we are, at least the way we look at those from this side of the Atlantic. I will structure these thoughts around three points.

The first one is about the timing of this pandemic. COVID-19 actually found us in the Digital Era. If we think of our life before we had to do all these things and talk about COVID-19 all day long, all aspects of our lives had something to do with data or apps. So we are in a situation where digital is really part of anything we do. It's only natural that we would think that the response to this pandemic would also have something to do with digital. In some ways it's like we have a digital hammer, and everything looks like a nail, including COVID-19. We see this actually in the way all of us are thinking about the digital tools and how governments are thinking about them.

Also, something that is interesting to remind everyone of here is that it is not the first time we are thinking about digital tools in the context of outbreaks. Recent outbreaks like Ebola in Africa, the last couple of ones, and Zika more recently, as well, during those outbreaks and epidemics we used big data and digital tools. I think because of the scale of those epidemics being what they were, the conversation was not as active. But these tools have been useful in those cases, and in some smaller circles we did talk about issues of privacy and data governance in cases of emergencies. Unfortunately, although we talked about those issues, we didn't in fact prepare enough to be ready to deploy our frameworks or to have the thinking done before COVID-19 hit us. We have some examples where these technologies have been useful, and it is only natural to think about them.

Another thing that's important—and we all have experienced this—is that this time the scale of the pandemic is very different from other times, at least in recent times. Together with that came the incredible response that we have seen from states, the drastic measures that have been taken that really affected life as we know it—social life, economic life—changes that we see and effects that will probably last beyond the time of the pandemic.

So states and communities have found themselves in the situation where, at the same time as trying to control the pandemic, they also want to get us out of where we are, and that means the measures that have been taken in order to control the virus. The situation is put to people this way: "How can we get out, what measures can we take while controlling the virus and not being in the situation where we need again to take these kinds of measures?" That's a difficult problem to solve.

The governments here in Europe and around the world are contemplating a variety of measures. These measures have been used previously in public health emergencies. Some of them are newer, like wearing masks, shielding vulnerable populations, testing people, identifying infected people and then looking at who they have been in contact with, the classic contact-tracing activities, and they need to do all of these things this time at a scale that they haven't done before. I think this is where the new difficulty is coming up.

My second point is that scale is really the question. It's one thing even to determine what is the right constellation of measures that you want to take in order to continue controlling the pandemic, and at the same time returning to some "new normal" at the scale that these measures are required today.

When we are looking at the measures I'm thinking of them like "old wine in new bottles," new, fancy, smart bottles, and that's where the contact-tracing thing comes in. Contact tracing is a very old and classic method in public health. There is nothing fancy about it, even in the context of COVID-19.

But what we are being told today is that given the way that this virus is transmitted, given the global nature of the disease, and given how we live today—close to each other and connecting with each other when we move around—we need to do contact tracing in a new way, in a fancy, smart way. This is where those contact-tracing apps or the digital contact-tracing conversation has come in. Our digital hammer and our digital thinking found a very concrete application in this case.

In short, the projects that have been put on the table are actually not digital contact tracing per se, it's the step before. What the apps want to do is help the contact-tracing process by identifying people through those means in order to then follow up with proper contact tracing.

An example is that as we're all using our phones, our phones can connect and record other phones with which we are in some proximity—and there is going to be a risk score that determines those, but the typical one is that two phones, let's say, being close to each other for 15 minutes in a distance of less than six feet. If one person is infected and the COVID-19 is positive, then the contact, the person who has been in that proximity, is potentially exposed and may be at risk.

That's the part that the app is going to take care of. And then you have to move into the follow-up, which is, what is this person who is being notified that he is exposed going to do? Somebody has to tell them what to do. They might have to go and test, they might have to quarantine, seek care, control for symptoms, etc.

What the app is supposed to be doing, or that sort of system, is to help ultimately the process of contact tracing. The benefit that is proposed is that we can do that quickly, at scale, and overcoming the difficulties if we have to do that manually, or let's say we all have to remember with whom we sat on the train and we don't know those people. This has been a very appealing proposition to a lot of desperate governments, who are looking at how to get us out of where we are without having any good solutions in their hands.

So it's a digital hammer. It's the fact that we have a good method that maybe is going to work here, and we need to put it in a fancy system because that will help us with scale.

Finally, I think it's a very shiny proposition because it seems to be promising things that the manual or analog world could not give us.

Here is where the problems begin, I would say. The first problem is obviously the one about privacy in the sense that to use these things effectively we would have to collect the data. The good news is that there have been a number of proposals about those apps. Some use location data, so they know where you are and who else is there. Other projects use this proximity method, which means we only know how far from each other you are, so not who you are or where you are but how far from each other you are.

That seems to be a more privacy-preserving option. At least here in Europe it has gotten quite a lot of traction precisely because it promises to be more privacy-preserving.

Let's assume that privacy is preserved while this is happening, when the two phones connect with each other because they don't connect with the numbers or with the names, but they connect with IDs that are being generated constantly, so you wouldn't know who the person is. Eventually, however, if we want the digital proximity tracing to do something, we want it to lead to some proper contact tracing, which means that downstream at some point we would have to identify this person so this person can get care, can be told what to do in terms of testing or quarantine, etc.

So one of the things I'm missing in some of the presentations of the contact tracing shiny promise is the sequence of events. Yes, privacy-preserving upstream, but what is happening downstream? And how do we connect these pieces along the way to when we tell people this is safe and secure and that data are used anonymously? Somewhere downstream you are going to be identifying. That is the whole purpose of the exercise.

The second difficulty that I'm seeing with these kinds of apps is that none of them has been really tested or validated. Of course it's early days, and maybe these things will happen, or this is a call-out there for people to do it. There are systems from the engineering perspective that look very attractive. They're clever. They are very promising, but they have to fulfill a certain purpose, and we don't know how they really work.

We don't even know the risk scores. For example, how close for how long, what exactly does it mean given the circumstances? What if both people wear masks or if they are in open air or in closed rooms? All of those things will determine the risk of the exposed person. We don't know this. We don't know how many people we need to have using those in order to be effective, etc.

In some sense, for me this is a huge social experiment that we're all going to be either invited or forced to take part in, with many, many unknowns. That is one of my worries. Again, I want to say that I still think that digital will play a role, but I'm raising worries rather than the promises. There are lots of people who talk about how shiny and promising this is.

There is going to be a big question around the voluntariness of that and what voluntariness is going to mean here. Is it voluntary to download the app? And if you voluntarily download it, are you then voluntarily using it, or you can forget your phone at home? If you voluntarily download it and use it and then you are notified, what happens then? What are your obligations then? Are you obliged to contact health authorities? Are you obliged to comply with quarantine protocols? The sequence of those events again is a bit unclear. At least in the cases and the countries that I am looking at, there are lots of questions but little clarity.

Another issue that I'm seeing—and I really have no idea how this is going to play out—if you look at mortality from COVID-19 but also if you look at how badly people are hit in terms of financial consequences, unemployment, etc., what we are seeing is that those who are worse hit are people in lower socioeconomic quantiles. Couple that with what we know about a lot of data analytics and technologies that seem to have bias and have a bunch of other problems, how can we guard that these kinds of technologies are not going to either exacerbate or scale the existing inequalities that we have? Are we going to benefit equally from those, or will it be only those who are well-off and typically get to benefit more often from what's happening with technology? Are we going to follow the same path? What happens to those questions?

The last worry that I have when we're introducing those technologies in the form of an experiment that's presented to us like a wonderful solution is, what are the lasting effects going to be? In case of an emergency right now, we don't have anything else, and we're throwing everything we have at the problem, including our digital half-cooked ideas. How are we going to guarantee that there is an expiration date for those systems, especially when they're presented to us as the tools with which we transition and the tools with which we create the new normal? They're not presented to us as, "Okay, you're going to have to stay home for two weeks."

No. We're told, "We're going to use these tools in order to be able to move around and create your new normality."

These are some of the worries that I have and I keep raising them in these conversations where I participate. They are very difficult. No easy answers, but I think unless we have some clarity or some response to those, I have a hard time believing that the technologies will be successful in the ways we hope they will succeed.

I'll stop here. Thank you.

JOEL ROSENTHAL: Effy, thank you. That was terrific. You've given us a lot to think about. Let's just pivot over to Jeff now, and we'll pick up some of these themes when we come back to the conversation. Thank you.

JEFFREY KAHN: Hi, Joel, hi, Effy, and thank you for including me.

If Effy's points about new technology apply to things we've been trying to do for a long time—the general theme around contact tracing—immunity certification is even more prospective I would say in the future. If you think about what the parallel would be, digital contact tracing at least is trying to apply technology to contact tracing, but what's the parallel for immunity certification? The closest thing we have is proof that people have been vaccinated to show that they are immune from infectious disease. But we have something to give them to make them immune rather than the way that we're going about this in the COVID-19 outbreak.

So one thing to say before I launch into the specifics here is that all of this is in the context of trying to figure out how we get back to something closer to normal. It's very much in real time. We're thinking about everything that we possibly can, and it will be a combination of the things we're talking about today and many others that will help make those decisions and how to make the decisions about reopening.

To talk about immunity certification I have organized my thoughts first with science and medicine. Even though my doctoral training is in philosophy and I focus on ethics and public health policy, as Joel was saying, I have an undergraduate degree in molecular biology. That was a long time ago, and it's out of date, but I can pretend on the science.

Among the things my colleagues who actually do know the science are talking about is before we talk about certification of immunity we have to understand whether there is immunity. So one prior question that needs to be resolved—and it's really a science and medicine question—is whether those who have been infected by this virus and recover have immunity from reinfection. It's obviously a basic and fundamental question that needs to be resolved.

If the answer to that is yes, there is still an underlying basic question about whether everyone who has been infected has immunity. There may be infections that are so subclinical and asymptomatic that they don't provide sufficient antibodies to protect, but we don't know, of course. Then, if there is immunity provided by recovery from infection, for how long does that last? That may be a function of both the way this virus works with our immunology, but also it may be a function of whether this virus is mutating and changing over time. That's why we need to get vaccinated for flu every season, and we don't get immunity once we've been infected from year to year because the virus changes.

The last basic scientific/medical question is: Even if you have immunity—and we know the answers to the questions that I have asked so far, and the answer is, yes, you get immunity, and, yes, we know that it works for some period of time—can you, even thought you're immune, infect other people? If you're exposed, could you bring it back into your home, bring it to the school where you're teaching, or to the place where you're working? This, of course is a critical bit of information. That's one set of questions, none of which have been answered.

The second set of questions is whether we can test for that immunity, if it exists. Among the things that have been part of the scramble is to first of all create a diagnostic test to assess titer, that is, the level of antibodies in a person's blood that might provide immunity, and do that in a way that is reliable. In public health that's called "positive predictive value," which is a combination of false-positive rate and false-negative rate. You don't want people to test that they are immune when they're not, and likewise you don't want people to test not immune when they are. So we need tests that work, and those have yet to be created, partly because we don't know whether there is immunity provided. But let's assume those things all play out in a way that, yes, people get immunity once they're infected and recover, and second, that we can test for it in a way that is reliable.

Then we get into the implications, which I think is probably more of the kind of conversation we want to have today. Understanding that this is all incredibly prospective, just in the way that Effy's remarks were, we try to think ahead about how certificates of immunity would be used.

One question we would need to answer is, what would they permit people to do? I think we are mostly thinking about, at least in the way the popular media has portrayed it, is that these would be "get out of our house free" cards. We don't have to stay in quarantine and socially distance anymore if we have some kind of certificate of immunity.

But we also have to think about the other side of that, which is, what would they require? If you have immunity and other people do not, we need people to do things that allow our communities and our society and our economy to reopen, and if not everybody is immune, we want those who are immune to be doing the things that allow that first. That's actually a different flip. It's not all about liberty. It's also about responsibility. You might have different responsibilities if you're immune than if you are not.

Then we have to ask, what would the social consequences of this sort of permit be? Clearly it's a way of thinking about the fitness of some people versus the fitness of others. When we start to talk that way it starts to feel very potentially stigmatizing and labeling in ways that have had a horrible history in the world over time, in terms of some people being singled out because they were less fit than others. Without putting too fine a point on it, yesterday was Yom HaShoah, Holocaust Remembrance Day, so it's very reminiscent of the idea that we will label certain people as having a level of fitness that is greater than others and somehow therefore more deserving of others and that, of course, we have to somehow work against.

While there may be fewer restrictions for some who have this level of immunity, we have to figure out how to help use that in a positive way for those who are not yet immune, and realize all of the conversations we're talking about are very premature, but even as they become less premature there will still be very, very small portions of the population who will have been exposed and recovered, at least in the United States and, well, really everywhere in the world. It's a tiny fraction of the population of any of the countries that are thinking about this.

So, okay. All of those things would need to be addressed, resolved, and prepared for.

We would then need to think about where would this kind of certification be issued. How would we be able to ensure that the thing you're carrying around is valid? Here in the United States our teenagers aren't permitted to drink alcohol until they turn 21. Many of them are in university environments before they are of legal age to drink, and there is a flourishing market for fake identification cards—driver's licenses that have a different birthdate on them than their actual birthdate—that allow people to show up in bars or liquor stores and buy alcohol.

So one imagines if these turn out to be useful ways to allow you to go out and do things you wouldn't otherwise be able to do, that there will be likewise a flourishing market. How would we ensure that that wasn't the case because we don't want people who are not immune to an infectious disease to be out and about doing things just because they would rather go to a concert or a restaurant or back to work because they need to earn money and use illicit ways in order to do that. That's an important policy and logistic aspect.

Another thing that loops back to "what does immunity mean?" is how often would you need to have your certification renewed. It's possible that your immunity would fade over time, and depending on how long the virus is circulating around the globe and in our populations, one imagines that you might not be immune forever. So how frequently would that need to be updated, and how would that process work? Might it have an expiration associated with it, and how would we check that?

Last but not least—and then I'll wrap this in a nice bow if I can—I think we have to ask, what proportion of the population would need to have become immune for this to be an important part of how we think about reopening? If it's a tiny proportion of the population and the people in one sector of the economy are not all being exposed and are therefore immune such that we can reopen some of the critical parts of society and industry, it will be much more scattered about. So there will be some people at universities and some people who teach elementary school and some people who work manufacturing automobiles, but it won't be enough people in any of those things to really reopen. So how do we think about how much of the population would need to be immune for this to actually matter, not just for their liberty, because that is of course part of it, but for it to affect how we think about reopening society?

This is far ahead in other parts of the globe than it is in the United States. There is a lot of talk about doing something like certification of immunity in places like Italy, where a large part of the population was exposed in certain regions of the country, the northern parts of Italy. Germany as well is talking this way. So one of the things I think will be important is that, much like Effy was talking about with contact tracing, we will learn from experiments effectively that are happening in societies that may not be our own and hopefully learn from and benefit from them.

Let me just close by saying that this notion of immunity and certification of it will be just one part of the many kinds of information and sources of information that will be important and required and necessarily brought to bear on any of the decisions about how and when and how much to reopen our societies.

With that I'll stop.

JOEL ROSENTHAL: Thank you, Jeff. That was really helpful, and it tied in nicely with what Effy was talking about, and I'm glad to see you both thinking into the future. But as you were saying, things are happening very quickly.

Just one thing I wanted to pick up as a theme that cut across both of your sets of comments is the question Effy phrased as "invited or forced," because I think implied in both contact tracing and the idea of certifying immunity, there seems to be an ambiguity here. At some degree it will be voluntary, but in some circumstances it may be required, and I wonder if each of you could say just a little bit more about that.

What I'm thinking about are very practical applications. For example, when your students return to school in the fall, there are now vaccines that are required in certain school districts for students to return. I'm thinking that another application might be access to public transportation. Are we imagining that we might have to either have an app that says we're participating in this system and we're abiding by it or some kind of certification?

I will go to Effy first and then to Jeff just on this invited-versus-forced question, and where you see this theme going.

EFFY VAYENA: That's a great question. We maybe have a glimpse of how this is playing out. I actually was talking to somebody in South Korea the other day, and it's not about going back to school or taking public transportation, it's about travel. If you come into the country, you could have two options: one is to self-quarantine for two weeks, or quarantine someplace, maybe not necessarily self-quarantine, maybe in a facility.

The other would be that you are agreeing to download the app and through that they can have control of their whereabouts and your contacts. So you can be given an analog option and a digital option. At the moment we're not given a serological option because the science is not advanced enough. This is in discussion, but we're seeing models of that form of, I don't know whether you want to call it "voluntary" versus "forced." You are given two options to choose from. I'm suspecting that we will see variations or combinations of those things.

But at the same time, I think in some countries probably, forcing this would be really difficult given the cultures and legal frameworks. Even in cases of emergencies they cannot give so much license for enforcement. I'm speaking particularly for contact tracing. For example, many European countries that are discussing digital contact-tracing applications claim that this would be only on a voluntary basis.

My worry a little bit is, let's say that countries are keen to roll this out, just also in order to test the waters on a voluntary basis, and the measures have not been successful, things are not working out, and the disease continues to spread. What's going to be next, and whether then we can move on to maybe proposing these solutions in ways that we are forced to accept them? My main worry there is if these solutions remain half-cooked, as they are right now in my opinion and as we heard from Jeff but also what I see in contact tracing, I wonder how we could ever justify forcing them upon people given what we know at this point about their efficacy in solving our problem.

JEFFREY KAHN: I think it's important to say that contact tracing is not voluntary. That's a public health measure that we use for tracking down infectious disease. What we're talking about is whether the information that we might have on our mobile phones, for instance, to aid in contact tracing should be voluntarily shared. Those I think are important differences.

We're trying to figure out ways to help do things that are traditionally carried out in the name of public health. There is often a tension in the context of civil liberties and public health about how voluntary things can be when we're talking about the interests not of the individual but the public health interest, and that's where we tend to shift the line about how much voluntary and private should continue when we're trying to serve what is the greater good of the public's health.

Your question made me think of a really important distinction to make, which is that there may be different answers to the question about voluntary versus required depending on the context. You can imagine an employer saying, "You can't come back to work unless we know your immunity status." "You can't come back to school" was your example, which I think in some sense is very relevant for Effy and I because we both work at universities, and you can't socially distance if you're a student in a dormitory. It just isn't possible to do that, so we can't have students back in the environment if the virus is still circulating unless we know more about them.

So you might say, "Yes, we need to know your immunity status," but maybe it doesn't then say, "and if you're not immune, you don't get to come back," but rather, "If you aren't immune, we will create certain accommodations to protect you." So it's information to help us make sure you can do the thing that you want to do or that we need you to do. I think that's an important way to put it.

In the United States we have something called the Americans With Disabilities Act, which is meant to recognize that certain people need accommodations to perform their jobs or go to school or do tasks of daily life. One of the questions this might invoke is whether non-immunity is effectively a new form of disability that ought to be accommodated under federal law. So, not just do you need to share it, but you want to share it because it allows the invocation of rights that you have to be protected to allow you to do the thing that you need to do—go to work, earn money to pay your rent, buy food, protect your family, and go to school. So I think there are ways in which we should think about this as helping to serve the interests of the individual as well as the public's health.

That was a bit of a ramble, and I went from one end of, "Well, we don't worry about privacy in public health" to saying, "Wait a second, this may be the way to actually serve the individual's interests," and we need to think about it across that full spectrum.

JOEL ROSENTHAL: One thing that emerged in talking to both of you is actually the different takes that you have on the crisis and how we're going to get out. Effy, you're in Zurich, and Jeff, you're in Baltimore, and you're both at the forefront of this idea of public health and the forging of public policy. I've noticed that you're both working different angles in some way. Effy, you were talking about what's actually happening in Switzerland now with the development of the app and the use of it, and Jeff, you were surprised that they were that far along.

This prompts a question. I'm wondering where we are in terms of a global conversation about these kinds of questions. Will these things just be worked out on a national or regional basis, and then we'll see what happens, and it will be kind of a best practices emerging? Is there any kind of global conversation about the uses of digital technology, the idea of immunity certificates, or are these things just happening in isolation?

Effy, I'll go to you first.

EFFY VAYENA: It's interesting to see that from where the pandemic started, going from East toward West, the conversations follow the same path. In fact, amongst the first countries to even come up with those apps were China and then Singapore. In Europe we're next because we were the next ones in line in this trajectory of the disease, so we were the next ones to talk about it, and we had already seen what China and Singapore did, and I think the United States was a little later in what happened, so maybe there's a chronological element here.

In fact, the country that released about two weeks ago the digital proximity-tracing app was Singapore with technology that is supposed to be more privacy-preserving than others. So we have seen that here. We haven't yet seen one in Europe, but we are very close to that. As I mentioned earlier, Switzerland has announced that we will have one on May 11. We don't know any details about it, but we know that we'll have one.

So, yes, countries are at different stages in the epidemic and also in their response, but I think they are converging toward the fact that they're going to be using those technologies. In every country you look at, in any exit strategy or transition strategy, you're seeing discussions about those tools, so it means we will have them in some form or shape.

In terms of global conversation, there is discussion in Europe about common standards. That discussion didn't go very well, even in that context, so we have different groups doing different technological solutions, but at least it is on the radar of people who have to have some common standard here, and intra-variability of some of those because keep in mind that people will need that them not just to get out of our houses, but we will need them in our travels, and there we would need to move around countries, different jurisdictions, and different technological solutions.

Perhaps it's of interest that the World Health Organization (WHO) is having conversations on these matters. They're working toward some technical standard that countries then can use to develop technologies, and they're also working on some governance and requirements guidance that, again, could help countries maybe align to the extent possible in how to govern the technologies that they are using. That's as far as the consensus or convergence that I am seeing right now.

JEFFREY KAHN: Even since we last talked about this, Joel, which was a few days ago, there is now a much more urgent conversation in the United States about digital contact tracing, and I have recruited Effy to help us with a project we're doing here, and I am on a similar webinar very early for me on a Friday morning with folks in the United Kingdom, so I think the academic plus policy plus expert discussions are starting to happen much more globally.

That said, the conversations then need to be brought back and filtered, interpreted, and applied through the systems where they would need to be implemented. One of the interesting political and governance questions is, how different will the implementation need to be based on the different systems in which we live? There is a geopolitical question too, about whether one system is going to prove itself better for dealing with these sorts of outbreaks, and what the implications of that might be on a geopolitical level. There was a story about this this morning on Morning Edition on National Public Radio, asking exactly that question. It's a fascinating question but of course one we won't know the answer to for a while.

JOEL ROSENTHAL: Thank you, both.

We have a large global audience watching and listening in, and I know there are some questions.

STEVEN BARNEY: Effy raised privacy issues connected to contact tracing. Is it appropriate at the outset to assume that pre-COVID-19 expectations of privacy are different in the Digital Age than in the Analog Age? For centuries public health officials have required individuals to disclose medical data for infectious disease control. International travelers in particular have long been required to disclose medical conditions and to submit to medical examination. Is there an argument that individual privacy has always been secondary to the preservation of public health?

JEFFREY KAHN: That was sort of the point I was trying to make, much better said by the questioner than when I raised it.

But, yes, that's the question we need to wrestle with. I was trying to make the distinction between changing the idea of whether contact tracing should be compulsory or voluntary. We don't talk about contact tracing as being voluntary in infectious disease contexts, but whether this information that will aid in the tracing of contacts ought to be voluntary or mandatory.

One thing to point out is that it's really challenging to do contact tracing for respiratory infections because it's really hard for people to remember where they had been and who they might have exposed during the time that they may have been infectious, and this particular virus seems to be infectious for many days before you are symptomatic, so it's made even harder.

One thought is, How do we aid what would otherwise be an impossible task to do in the traditional way that public health carries out contact tracing? Technology seems to be potentially helpful. So that's the setup. I'll let Effy pick it up from there.

EFFY VAYENA: To build on that, there is a further distinction that I think it is worthwhile making. In the analog world you have the person infected exposed, at-risk contacts, and then the public health agencies or the professionals who are looking at that. I think when this process is mediated by technology, we have a few other players there, and that is different from the analog world. We have the phones that run certain operating systems, we have the companies who develop the apps. We have a lot of different pieces that I think could give access to whatever data that is there and being collected to maybe more than those that they need to have access to. That's one difference.

The second difference is what kind of data you're collecting. How much more? In the analog world, okay, you have the name of the person, their telephone number, and their home address. But you don't have a lot of information of the absolute movement every single minute of their lives, whether they took that path or the other path. You need to know with whom they crossed, but you get to collect a lot more. So this is different. I think the potential here for misuse, while we're trying to aid something that we agreed a long time ago is something legitimate and important and maybe even doesn't require the voluntariness as much, is that to get there we introduce entry points for harm because of the technology and because of the actors.

If also you look around today in the development of these technologies, in most of the states that I'm looking at, it's a collaboration between state actors and private actors. There is no single actor that's doing this.

Even for all of us in Europe and for the United States to have these apps become possible, you need Google and Apple to play along and to say, "We're working together to develop the application programming interface that will allow you to run your system in this way." This is a difference I think in the Digital Era that changes a little bit the balance, let's say, compared to the analog when it comes to the question of privacy and voluntariness.

JONATHAN GAGE: In what ways are the ethical questions different from those related to the widespread use of contact-tracing practices by consumer-facing tech companies, for example, Facebook or Google? I'm referring here to the harvesting of personal contacts in addition to web-browsing habits, etc., to promote the expansion of these tech companies' social platforms. And how are the ethical issues different from the digital contact tracing already and increasingly used by law enforcement and anti-terrorism authorities in many countries?

A second, related question: What can we learn from those two existing sets of contact-tracing practices to understand the opportunities and dangers?

EFFY VAYENA: Again, that's a great question because in the digital space we do have that happening from those big companies. The fact that it's happening, though, doesn't mean that we are not struggling with this, and it doesn't mean that we're not trying to develop regulation and practices that may contain it to some extent. In Europe at least we have been trying with the General Data Protection Regulation (GDPR) to change the habits of some of these companies as to what they can do and the way they can trace us. A lot of people would hate to say that that is the standard we have created, what has happened to us already in this kind of commercial context, spilling over to what happens in public health.

I think perhaps the other layer that comes in here is that the power that public health authorities and the power that the state has over us in cases like this is very different from the power that the companies have, whether they are selling us the right kind of perfume or the right kind of detergent because they traced our contacts and what we do. I think it's different from being ordered to be quarantined or isolated for 14 days and being unable to go to work or being fined because we did not comply. So there is a difference in what at the end is the outcome of this.

But in relation to what we learn from what happened, I think what we learned is that being relaxed about privacy and how companies can use our data wasn't exactly a brilliant idea, and we are trying in the aftermath to do something about it. We have seen scandals with Cambridge Analytica and other things. Okay, they're not related to health, but they have been very harmful to important institutions of our society. The lesson is that we should have been much more careful with privacy than maybe we were or maybe we were too naive or immature in the early days. Those lessons are important to learn.

Perhaps the other lesson—because you mentioned in the question law enforcement and antiterrorism authorities, etc., in many countries—we learned is that a lot of things that happen in cases of emergencies seem to stick with us. That's one more important reason to make sure that what happens during the emergency, which is where we are now, is carefully thought through because the likelihood that it will stick with us for a long time is pretty high. That's what we learned unfortunately from our history.

Jeff, now you're going to answer the question.

JEFFREY KAHN: Maybe I'll just make another observation to build on what you said.

I think the conversation is making us realize—which some of us did anyway—that we're carrying around devices that know where we are and who we interact with. When you open Google Maps or the map app on your phone, it knows where you are obviously, and it collects that information. That's something that we agree to as part of the terms of service of using that device in that way.

To the extent we think about it, we feel like, Well, that's not going to be used against me in any worrisome way, at least that we can imagine. It is being monetized, but that somehow seems less problematic from an ethics perspective than it being used to track us and decide whether we can go out of our homes or not because we might be infectious.

Just to reiterate what Effy is saying, it's maybe not new in terms of the fact that we're being tracked all the time, but rather the use of the information and by whom that's different in this case.

DAVID TOKSOY: Isn't the tracing an effort to close the gap of insufficiency of the tests and therefore a threat to privacy because of insufficiency and a lack of precaution by the authorities?

CH BARTH: The survival of the human species and of human societies is at stake. This cannot be left to the WHO alone. Global leadership, and therefore the UN secretary-general's involvement is required to bring in the relevant socioeconomic, legal, and ethical components.

JEFFREY KAHN: I'm not sure about the first question. Clearly this is all part of a lot of things that need to be beefed up and done better and more efficiently. Testing of course is part of that. But if we know who's infected through testing, then we know who to check on whether they have also been infected but don't know it. That's the point of contact tracing. They need to be done together, I think, so I'm not sure that more testing would lead to less need for contact tracing, at least the way I'm hearing the question.

I don't know, Effy, if you have a different thought about that.

EFFY VAYENA: I'm wondering if the question is if we were in the first place prepared to test sufficiently and contact trace as is required in these cases, but at the time when this was a more manageable exercise than it is now because the disease has spread to the extent that it has, are we now trying to catch up because we didn't have that testing in the early days or we didn't have the preparedness in the early days. I may not be reading the question the right way. Maybe I'm projecting what I'm thinking because I do think that we were not in most countries prepared enough to respond early, and we have seen countries that, even after seeing what happened elsewhere, were still being quite relaxed about how they were going to respond.

So, to some extent I think it's true that we had then to take extreme measures, and we have now to come up with additional solutions to perhaps do the catch-up game because we were late and we were not prepared, and we are left with fewer options at this point.

JEFFREY KAHN: Maybe thinking about it a little more, it is the case that contact tracing is most effective early in an outbreak, and clearly we are not early in the outbreak any longer. So maybe that is the point. Earlier testing and the ability to contact trace would have made a big difference, and we're now behind the curve rather than ahead of it.

EFFY VAYENA: Therefore now we have to scale it in the way that you need to know with whom you are sitting on the train and not just through the contact-tracing process.

JOEL ROSENTHAL: We're coming to the end of the hour. I thought we could wrap it up. Maybe I could just turn to each of you, Effy and Jeff. Effy, you did a great job of telling us some of your worries and some of your concerns, which I really appreciate. These are the things that we need to work on, and we need to work on them together to come up with good answers and good solutions.

But I was wondering if each of you could give us your sense of promising developments. The topic was how the lockdowns will end, and they will, and we'll find our way through, but as we're sitting here in mid-April 2020 and things look pretty gray, it's hard to tell where this is going. When you think on the plus side, on the positive side, what can you leave us with?

JEFFREY KAHN: I'm paying more attention close to home as I think many of us are, but I think it's generalizable to say that the social distancing efforts have had a positive effect. The rate of cases is slowing down and plateauing and maybe even decreasing in many places.

That's of course a very good news story, and among the things I've been spending a lot of my time on is preparing for the terrible decisions that might have to be made around triage. We haven't faced that in most places, Italy and maybe Spain notwithstanding being really horrible examples of where that has apparently had to happen. That's a good news story, but it's a good news story that shouldn't make us complacent about what this pandemic is like.

And it will come roaring back if we aren't really careful, so it's a little bit of a double-edged answer. It's not all good news, but I think there is good news if we figure out how to manage what we're doing while we somehow allow things to start to reopen in really careful ways. The timing for that of course is under a lot of pressure, but it needs to be done extremely carefully or we're just going to see renewed infections, and that won't be good for anybody.

EFFY VAYENA: Along similar lines, I'm looking at Europe, and most countries in Europe have actually announced a schedule of a slow reopening and return to what they call the "cold soft lockdown," so it's looking not that bad because we're going to be moving back to some sort of transition.

I see this as a second chance. As I said earlier, I think we missed the first chance of acting quickly and decisively and doing the things that we had to do. I think we gave ourselves with those painful, painful measures a second chance, and hopefully we won't ruin it this time again.

Perhaps the other, more positive thing that I will say is that these have been extremely difficult measures for people to bear. What we are seeing in many European countries, and I think in the United States as well, is people's solidarity and people's compliance and people's sense of kindness and empathy in small communities and bigger communities has been a very positive thing to look at in this very dramatic moment. So, a second chance and empathy, kindness, and solidarity I think are maybe the way out. I'm hoping that will be it.

JOEL ROSENTHAL: Thank you, Effy. That's a great way to wrap this up. I'm glad to know that there are people in positions of power who are listening to you and who are listening to Jeff. We appreciate you sharing all these thoughts with us and with the audience today.

Just to wrap up, I want people to know that this webinar has been recorded, so you can share it with your friends. We will be putting this up on the Carnegie Council YouTube channel as well as the Carnegie Council website.

Anybody who is listening in, you can join us next week. We're going to be meeting again next Wednesday, and our topic then will be "Prospects for Global Coordination in an Age of Pandemics and Emerging Climate Technologies," and our guest will be Cynthia Scharf, who is a senior strategy director for the Carnegie Climate Governance Initiative (C2G).

Thank you, Effy. Thank you, Jeff. Thank you to the whole audience, and have a great week.

EFFY VAYENA: Thank you.


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