Aleks Krotoski on digital data after death

Read the full transcript of our Science Focus Podcast interview with Aleks Krotoski about life after death - listen to the full episode at the bottom of the page.

Published: March 9, 2020 at 8:00 am

Alexander McNamara, Online Editor at BBC Science Focus: The first obvious question is that, what is our digital data, and how much of it do we have?

Aleks Krotoski: Oh man. We have so much digital data. I don’t think we, in fact I know we can’t comprehend how much stuff we put online. We literally cannot comprehend. There’s stuff that we put on like 20 years ago when we didn’t even realise that it was online.

Or there’s stuff that we gave to companies even before the internet was a thing, or perhaps the web was a thing that have been translated into online data. There’s stuff that other people say about us which is actually kind of data about us. It’s kind of our digital data. We may not have direct ownership over it, but it certainly forms our digital online selves.

There’s so much stuff that’s out there about us that effectively, it is not only an extension, but it’s kind of like, some people have described it as a shadow of our lives. I don’t think it’s actually a shadow because, well, that would suggest that it in some way is not alive and not constantly being generate, and in fact, it’s, after we die, it is still being generated, whether it’s through data points that are official datapoints, or whether it’s through those inter-personal conversations that happen to talk around us or reference or any of that kind of thing.

And so we have a lot of data online.

AM: OK. So, and, that data that we’re creating, now, you say there’s things that were before the internet, you know, things that are going on now. I sort of, when I think of the data that I’m producing, I’m like, OK, I make searches, I go on Twitter and Facebook and that sort of thing, but, I guess by the sound of it, there’s a lot more there that we don’t really sort of put together as these are our datapoints.

AK: For sure, and I like to describe this as the distinction between digital identity and online identity. So, our online identity is that thing that we think about when we think about our online selves often.

You know, this is what we put on Facebook, this this the stuff that we kind of, that represents who we are in a kind of psychological and a social way. Who are you online? Well, you know, this is my profile picture, or this is the stuff that I’ve written as an update or, even this is the type of thing that I consume as a news or an information consumer.

That’s our online identity, and that’s the thing that’s kind of ambiguous. It can’t really be locked down. We like to interpret that, and we like to have ownership over that self. On the other hand, there’s also something that’s also known as digital identity, which is in the [trade], that’s the thing that is our authenticator.

That would be things like passwords or bank details or our address or our IP address, or our MAC address, MAC being the thing that’s the identifier on a mobile phone. So, there’s all kinds of identifiers and authenticators that we don’t necessarily think about that are also part of our identity.

You mentioned search. I think that’s a really great example, because people forget very quickly, and some people don’t even realise that our searches are actually being recorded in order to give us better search results in the future.

And that’s part of our digital selves as well. So, there are two different aspects, two different facets to our online lives. The online self, or our online identity that we generate, that we kind of think represents who we are, and then the other side which is the stuff that the businesses and the other organisations that operate online use to identify us.

All of that data is around. It follows us around, it circulates us; it’s like we’re in the centre of this crazy, data-galaxy, and it doesn’t stop when we physically stop in this world.

AM: So, how would we, you know, is there a way that we’re able to sort of, you know, even before we die, say, OK, here’s all this data. How can we collect it all into one place essentially to say, OK, essentially, this is my digital identity, and this is my online identity?

AK: No chance. No chance. I remember in, when was it, it must have been like maybe, maybe 2003. It was before I started doing my master’s degree, so, maybe it was 2003. A friend of mine, she worked in television, and she was always on the lookout for stories, and she and I had, we went for a beer or something, we were in the pub, I remember exactly where we were; we were right next to Edgware Road Station, the bit that’s in Shepherds Bush. Not the other one that’s down the way.

So, we were in a pub, a really nice pub, and we were just, you know, shooting ideas around, and I remember we came across this one idea. We sort of landed on this thing and we spent a lot time talking about it. Doing a programme, or some time of investigation, as to whether we could disappear online.

Whether we could just literally, not from now I’m disappearing, because that’s relatively, not that easy anymore, but still, at the time, you could stop producing content online. But I mean, disappear completely. Like, in the good old days when there was like, everything was paper based and there was a fire in the records department, and you could just not exist. You just never existed.

You could take away all of the Swiss bank accounts, and you could you know, you could get rid of your birth certificate and any marriages. You know, in the good old spy thriller kind of way. You know.

And at the time, we realised that even at that early time in our web lives, it would be really, really, really difficult to do. How to disappear completely. Not possible even then. Since that time, and this is, you know, we’re talking a long time ago. We’re talking 15 or so years ago, since that time, we’ve been tracked, we’ve been traced, everywhere we go without, you know, with the computers in our pockets.

Every time we log in somewhere, we are leaving digital traces of ourselves, and that means that we have no possible way of creating some kind of itemised list of what our digital identity is. But of course, you have to think about this in the same way as offline. While it may not be physically recorded, though that depends on how many CCTV cameras exist in the country that you live in or other types of observation techniques that are used for security or for business or whatever.

We’ve always left little pieces of ourselves around. They haven’t been recorded necessarily into permanent records, but they have been recorded in other people’s minds. And the way that other people have always thought about us, and the way that our identity is formed within the social environment, it’s very similar.

The difference though is that at that time we weren’t able to itemise everybody else’s opinions about us. Now we can’t itemise all of their opinions as well as all the things that are recorded about us in the digital space.

AM: And so, I imagine, you know, we’ve got, we’ve put all of this data into places like Facebook or Google or like that, and we could sort of collect all individually in one place but there are other places, like you mentioned CCTV cameras, you know, they can see us, but with things like AI and face tracking software, there must also be a whole collection of data that we could just never get our hands on it no matter how hard we tried.

AK: We just don’t even know it exists. There was a really interesting article that happened late in 2019. It was published about a woman in China who had facial surgery. Just, you know, she’d got a nose-job or something like that. I don’t know the details of what she did to her face, but she did enough to her face that all of the facial recognition technologies that are now used for things like access to the train or access to her bank, or access to school, these place she couldn’t get in anymore because her face was not recognised by the AI anymore.

She had done such a dramatic change to her face that her nose was too different for the AI to recognise that she was the person that she had been who had that name, who had that identifying feature before, so she could get on the train, so she could get into school, so that she could get into work, so that she could access her bank account.

That, that’s you know, the, weirdly, it’s the not so distant future, because it’s actually happening somewhere in the world, and while we haven’t experienced it so explicitly yet in the West, in Europe or in the US, it’s coming, and certainly our facial recognition software is hugely controversial, but regardless, it’s kind of encroaching all that data.

We don’t know who owns that data. We have no way to track that data down. All of this stuff exists beyond our kind of ken. And it’s, we made an episode for Digital Human about four series’ ago called Sublime, which was about this idea of the concept of the amount of data, the amount of technology, the amount if infrastructure. Just literally the networked world that we exist in and that it is beyond our comprehension, that it has achieved the idea of the sublime.

And, man, if we had poets writing about what the sublime is, you can imagine that individuals are not going to be able to tap into their own degree of the sublime and have a nice dossier about what their digital selves are.

AM: So, that leads us on quite nicely to the fact that, OK, yeah, there’s a huge, huge, incomprehensible amount of data about us while we’re alive, the next thing that happens is obviously what happens to that when we die?

AK: In the good old days, or the bad old days depending on how you view it; in days before the web and before the internet, we would fade away. Unless we were particularly well known or we did something controversial or whatever, unless we had some kind of notoriety, as the song from Fame says, we lived forever in people’s minds, we would ultimately fade away.

And I remember years ago standing next to this extraordinarily beautiful church in Northumberland. It’s a National Trust property, and it’s right up on the hill, right next to Whitley Bay, and it’s, there’s a gravestone, it was made of sandstone, probably not the best material to put next to the North Sea, so you can imagine that the whole thing is just kind of like been crafted, it’s been etched away by the sea air and the blustery sea air at that.

It’s sort of, it’s faded this beautiful church away, but it’s also faded all the letters on the tombstones away in such a beautiful, organic way that it’s almost as if they’re melting away. And I have no idea who was buried there. There’s probably somebody somewhere in the world who’s like great, great, great, great grandparent, you know, lives or died or resides shall we say underneath that tombstone.

But it’s very difficult to kind of remember who that person was and what they did, what they thought about, you know, how many eggs they bought, you know, if they, you know, if they went on adventures, if they had interests in particular ways, because our social memory just faded away.

Now, we don’t yet have a facility for allowing our digital lives to disappear and fade away. I’m not suggesting that that will never happen. There have been suggestions in the past of trying to create systems that over time kind of forget and our digital data fades away. That I think is too complicated an idea across the entire sublime nature of our digital footprint.

But still, we don’t have the opportunity to fade away as much as we had in a time before everything was recorded. And so, we’re in an interesting moment because we, we’ve never been so self-obsessed and so record hungry throughout our history, at least, you know, across such a mass observation, and with such specific [nodes], specific points in a dataset.

So, it will be interesting to see what happens as we, as a society, come to terms with the fact that once our physical selves are done, we, and I mean not just the people who you know, achieve notoriety in their lifetimes, but every single person who’s lived is going to live forever, and we’re going to have all this data, and what does that mean?

AM: That sort of sounds like, in the future with all the data we’re collecting now, we’ll be able to have this sort of, not holographic but virtual representation of ourselves that exists because of that data we’ve collected.

AK: Like Elvis. Elvis still goes on tour. Michael Jackson goes on tour. Yeah, absolutely. In theory, but also, but I think that within that question is an assumption that I don’t agree with, and the assumption is that our online selves are the online reflections of our offline selves.

As I mentioned, we have these two senses of self. We have the, sorry, we have these two online identities. We have the online and then we have the digital identity. Big Data, which is, you know, is the concept of the huge, vast, troves of data that we have about each and every one of us, and the idea that it can be crunched in an aggregate to create interesting concepts and ideas and artificial intelligence and machine learning etc.

That data is only as good as the data that was put in. When I was doing my research, one of my favourite comments on the methodology that I was using was somebody said, “Don’t forget, rubbish in, rubbish out.” If the data that we have about ourselves online doesn’t actually represent who we are, but only represents a particular element of us, then that data will be a kind of an ill-fitting hologram. It won’t be us.

You know, it won’t be the clone, which of course at that point, when you’re talking about clones, you’re only talking about the physical self; you’re not talking about the mental self as well. It depends very much, you see, this is where we get really into like philosophical questions, that’s what I like about this idea of death and data is that it sort of starts to challenge us about what actually the self is, and does it matter if all you get in the future from this hologrammatic representation of the data that we put online, that was gleaned about us doesn’t actually, it isn’t actually the self that we were.

We’re dead, it doesn’t really matter, but does that matter to the people around us. I don’t know. So, you would get an imperfect representation of you now, if someone just used the hologrammatic data that was available online.

AM: I suppose it’s like the saying, history is written by the victors. In this case the victors are just ourselves writing our own representations of what our life was like, essentially.

AK: It’s amazing for future scientists, for future social scientists. I mean, the mass observation projects from the ‘30s were extraordinary insight into people’s lives that we still reflect on today, and of course, that’s continued. You know, the British Library continues the mass observation project, and then you have other projects of people seeking to document public health issues, epidemiologists use these longitudinal studies to understand, you know, the nature of both physiological issues but also social issues.

And that, having that data as an aggregate is fantastic. As individuals, I mean, really? Seriously? Sorry to say but we’re all not that great. The fact that we document so much about ourselves is going to be super-useful in the future in aggregate, but very few people are going to be actually interested in who you were as an individual.

So, how we parse all of that information once our generations have gone, and the future generations have a way to even conceive of trying to get through all of this data and look back and kind of dig archeologically through our data.

We’re not that important, but I think as an aggregate, it will be really interesting to have all these datapoint, to understand one aspect of our society and how we operate it.

AM: So, I do want to come back to that big data point in a minute, but on the lines of where you say that our, you know, who is it important for? Essentially, with things like if you die and you can create a Facebook memorial, well, not you; you’re obviously dead, but Facebook can create a memorial page for you. Who is that serving, and how long is that serving them for?

AK: It depends, doesn’t it? I mean, I have a friend who died and his memorial still exists, and he died a while ago now, and people still comment, you know, “Thinking of you,” or you know, “Has anybody else remembered that this happened at this time,” and it’s a way for us to gather and reflect in the same way that say a gravestone used to be the place that people would gather.

It is still a place where some people still gather. I go and visit my dad and my stepmother’s graves in Louisiana, and there are people, families who come together and they have [jamboree] or food, you know, picnics at the cemetery.

There, and in Los Angeles, you have huge Hispanic families who come to the cemetery on days off, and they just hang out and the have picnics and the kids play. So, it depends upon, you know, I think it really depends upon the culture and the individual as to what those memorials mean.

The fact that they’re virtual then means that people who can’t go to a physical gravesite or to a physical cemetery, if that is what the person has chosen to do with their remains, then you know, that’s great. That allows more people to gather.

That’s really who they’re for. It’s for the people who are left behind. Ultimately, what we’re, we’re not, when somebody dies, it is the people who are left behind who required the greatest care, because the person has gone, and it’s their memory and it’s the people, it’s the emotional support of the people around that person who loved that person; they’re the ones who need to have those reminders, who need to reflect, who need to be supported by one another.

And that’s who the memorials are for.

AM: Do you think that there’s, you know, we need to make sure those memorials remain in place? So, for example, you know, there’s a cemetery near my house and it’s a beautiful place and you know, it’s a really lovely place to go and sit and walk around, but I don’t know any of these people. You know, these people all died a long time ago, and you can see on their gravestones they died 1950, 1920, and before.

That in itself is a legacy that is not really catering for people who were their contemporaries. Does there need to be a digital sort of, a similar digital thing?

AK: Well, it’s interesting because I went recently to the last day of the dead in Los Angeles, and Día de Muertos is such an important part of you know, the South America, the Central American experience. It truly is one of the most beautiful things I have been to.

I find it amazing. And it happened to be at the Hollywood Forever Cemetery, because I was in Los Angeles at the time, and they do this massive thing where everybody dresses up, and we’re all dressed up as you know, the sugar skulls, and they’re selling the sugar skulls and there are these altars that are there that are either over existing graves or in a different section of the cemetery which happens to have a big sort of central park area where people can gather and have picnics or do music or whatever.

As well, within the boundaries; within the grounds. And it’s a place where people are able to celebrate their families, their loved ones, people that they’ve never met. Have you ever seen the film Coco?

AM: I haven’t, but I know the one.

AK: Oh my God, I love it. I love it. Oh. It’s, I’m so glad that they made that film at exactly that time, because I happened to be going through a lot of loss in my own life at that time when I was released, and for me, it was such a great comfort, because the premise is that this young boy, he’s called to music. His whole family has eschewed music, and they said, “No, you can’t do music, because you know, it ruined our life, your grandmother, or your great grandmother loved a man and he went away for music and he abandoned the family.” And blah, blah, blah. And so, we mustn’t do music.

But he’s called to music, and it’s his search about why he’s called to music, and he ends up in the land of the dead, on Día de Muertos, on the Day of the Dead, which is when people gather in cemeteries to light candles or put flowers out. This is big in Poland as well. You find it in most Catholic countries, actually.

They come, even if they don’t know the family, the family members. And the little boy goes, and he discovers his great, great grandfather. He’s never met him of course, but he meets him in the land of the dead, and it, the thing about graves and the thing about cemeteries and the memorials, and any kind of memorial, whether it’s a digital one or otherwise, it’s a place for people to feel a connection with the past. To feel a longevity. To feel a sense of who they were. For better or for worse.

And I don’t think that those are ever going to fade away. The fact that the cemetery close to your house is simply a peaceful place and it’s a park, and it’s a place where people can go and enjoy the space and the solitude and the solemnness and the fact that they’re sort of, whether it’s an underlying psychological or philosophical concept of, you know, the finiteness of our own existence or whatever it is.

People go there because it’s a place of, sort of, remembrance and reflection. We have these online as well. You have to go to them, you have to find them, they’re not sort of as central as memorial parks are in the physical space, but they serve the same purpose, and I think that they are as valuable, anything you can do to get through that period is as valuable to you and to your community and to those people around the person that you lost.

Whether they died in the 1920s or the 1850s or last week.

AM: I suppose with, as you say, anything that can help people, a lot of these sort of online memorials, they’re pictures and they’re photos, and they’re memories of what people have said. So, that obviously leads me onto the next question is that, there are these photos and these pictures exist. Who is it that owns them? Because presumably, you don’t own them anymore, or did you even in the first place?

AK: Well, whoever, whatever site you uploaded them to, that’s the answer. You know, Kodak, just to choose a company out of the air, Kodak didn’t own the snaps that you took on their film. You kept them in a, you know, you kept them in a binder or in a book at home, and so you kind of owned that image. You had the negative and all that kind of thing in the old days.

But whatever site you upload these things to, has ownership over those images, and that’s just the nature of the commercial transaction we have with the online space that we often forget. That doesn’t necessarily mean they’re going to do something nefarious with them. But you know, they have the right to use that image for facial recognition technologies or for other R&D activities, or indeed, as I’ve found myself, and other people have found, those images can end up in advertising clear across the world.

That’s a bit awkward. But yeah. I had to write to somebody and say, “You don’t want to be putting my face next to those pots.” Like, why did you do that? What a weird thing for you to do. That, so the company that you uploaded the images to owns those images.

AM: So, what about other things. So, for instance, music downloads or books or…

AK: You can’t pass them on. You can’t put them into a will. It’s not possible. It’s impossible to pass on your MP3 collection to your next of kin.

AM: That’s kind of sad.

AK: That’s how it is. Because you know, the download, it’s within, the download is within a passworded service within an app which is in whatever. You don’t own that data. That’s not your data. You are borrowing that data. You have paid for the use of the licence. You have paid for, you’ve paid, basically, to rent it.

You can’t pass it on.

AM: So, all that data is there collected within, presumably, the majority of all the data is held up, locked up within a few companies. So, like, I don’t need to say which are the biggest data companies in the world, but is that ultimately an issue when you’re, just in the general conversation about what happens to your data when you die?

AK: It exists. There are more people practically are concerned with making sure that their loved ones have access to their data, or at least to those services, so, you know, creating an estate plan that includes your usernames and passwords is a kind of basic, a really, really basic thing to do if you are planning your estate and you’re planning your legacy.

There are lots of services and apps that will allow you to do that. But at the moment, there are only sort of the, there are only, I’m not going to call them the outsiders, but the sort of peripheral players who are thinking larger than sort of, who are thinking more societally, I would say, about this kind of thing who are concerned about the fact that it is those big companies who own that data.

AM: Because presumably, there must be some sort of, even an ethical thing which suggests that the big data companies, do they need your data when you’re dead?

AK: Of course. Of course, they need your data. It’s data, man, it’s data. They can do all kind of cool things with it. They can crunch it in all kind of cool ways, they can run your pictures through their machine learning systems. They can learn emotional cadence from the types of tweets and the types of things that you’ve published.

They can learn aspects of human anticipation and sort of anticipated purchasing or commercial power by looking at the searches that you do. They can, or even the things that you’ve bought in the past. Like, of course they need your data.

You, it doesn’t matter who you are, you individually, it really doesn’t matter. You are a piece of an aggregate for who they are using in order to get smarter. Whether you’re alive or dead frankly doesn’t matter.

AM: I sort of, I imagine now that this data is, once you die do they anonymise, it’s a hard word to say, but do they make it anonymous afterwards, or are they saying, OK, this person’s dead but I’m going to carry on using this data in a way that, as if it might replicate what they might do if they were alive.

AK: Genuinely, they don’t even know if you’re alive or if you’re dead. Perhaps if you’re data streaming in a particular way stops, then they’ll be like, “Hm, this person has stopped using this service.” Right? If I’ve stopped using a social network, I might be dead, or I might just have stopped using that social network.

Like, they don’t know. They’re not that smart. They really don’t care. They genuinely don’t care. They would prefer if you would continue to populate their dataset, but they don’t care. What they can, what they really want to use, the value, the true value in the data is in the aggregate; not in the individual datapoints.

And I think that’s something that we forget, because of course, naturally we’re like, “But I’m really important! And I’m expressing myself!” We’re really important to our circle of friends and to our families and to those in our close network. We’re not important to companies.

AM: So, you know, I was logically thinking, so, is there a way how we can protect our data upon death, so it doesn’t get used, but actually, does that raise a question of does it even matter if we protect our data.

AK: It’s too late. As soon as we start to put our data out there, we signed an agreement. We signed a user agreement for every, single service that we, every single service that we’ve used online. Every single thing has a terms and conditions thing most people don’t even read it. They just tick the box so they can get through to the service.

And that just says, “Thanks for your data! That’s it! We’ve got it!” So, the idea that we can like turn around and say to any of these big companies, “Right, as soon as I am deceased, as soon as my, in the US, my social security number has been registered as no longer applying to a person, you can no longer use my data.”

They’re like, “No, we used it when you were alive, and you gave me data, and that data is valuable.” They don’t care. They truly do not care. They don’t care.

AM: That’s, it’s just mind-boggling me now that I’m just thinking that, I sort of came into the conversation sort of expecting us to say, “OK, your data’s very important, and it goes one way, and after you’ve died, the conversation is all about who looks after your data and why it’s important to do one thing or another.” And now, actually, it seems like, that importance isn’t there. It’s more important to the people who are close to you and the people who want to remember you intimately as your family or your friends and that sort of thing.

Whereas actually, if the rest of the data gets thrown out to the big data companies, it’s not a problem.

AK: It’s not. It really isn’t. And we, I sound so much like a doom person. But when, you know, it is important to be the, to entrust your data or at least the access to that data to your family and friends. It’s really important to do that. Because if you cannot access that after a person has gone, that is a gap in knowledge in the same way that you would have no idea of what your Aunt Lucy’s middle name was because everybody who knew Aunt Lucy died.

And you can never track that down. There is no way to track that down except perhaps online now, but you know what I mean. But like, that one thing that you need to know is gone. That information is gone. And if a password is gone or a username is gone, then your entire stream of pictures that you put up online is gone.

And you can’t ever see that again. You also can’t authorise the companies to use or not use your data. So, for example, if somebody comes along and besmirches your identity, then if you don’t have access to the username and password, then you cannot change that. You still would have an uphill struggle, say if you were going to go to a social network and say, “OK, I want this shut down.”

They’d be like, “Well, you are not listed on the power of attorney. You were not listed as one of those trusted people who has authorisation over this account. I’m afraid we own this account”.

They might be like, “Oh, I feel sorry for you.” But to be honest, they’ve got a lot of people who are dying every day who use their service, so they’re not really going to be particularly sympathetic. They see you again as just a small datapoint in their gigantic, global network.

This is not to say that they are bad people, right? That what they’re doing is evil. It’s just, it’s just the nature of it. It’s just, there are people who are dying every day, and that means an enormous amount, I mean, a profound amount to the people in the circle of life that that person lived. But it really doesn’t matter to the people who are maybe five degrees away.

And we have to think about those data collecting organisations as somebody who’s like a friend of a friend of a friend of a friend of somebody who died. They’d be like, “Oh, I’m really sorry for your loss, but I don’t really know how that affects my life directly, so, I’m sorry.”

And we just have to recognise that they happen to have the control over our data, because during life, we gave our data to them.

AM: That sort of moves me onto the next thing that I want to think about. So, obviously, once we die, we’ve given our data away, but then there’s also the situation that there are people who have got, say, terminal illnesses, and they’re in the process of knowing that they are going to die, and they’ve already got this digital identity.

What sort of things, you know, obviously, there are lots of examples of people talking about it, but there’s obviously, there must be some sort of psychological impact of what you’re going to do with your data and how you sort of, you know, clear it up and collate it all together so that once you have died, you’re certain of where it’s going to go.

AK: Oh man. Would that be the case? My dad, when he was dying tried desperately to get all of his paperwork in order so that it would just be really easy for me to pack it up and send it to the places that it needed to go, but you know, after a while, he just got very tired and he didn’t, so I spent the past however many years trying to make sense of this taxonomy that was in his brain that he was trying to organise all of that paperwork.

You know, that would be great if it was at the front of somebody’s thing as they’re dying, and for some people that is, but the best that we can really do, because we just cannot tie up all those loose ends is make sure that your next of kin, or whoever you want to look at your laptop, oh boy, that’s a personal thing, yeah, seriously, I would clear that up first, because somebody’s going to go in and figure out what all those files and all the things you don’t want people to see, what all of that is.

In the same way that when somebody dies, they may have a house or an apartment or whatever that you have to go through and clear up. The data is another aspect. So, in terms of making sure that the data goes to the right people, that’s something that is for legacy planner. That’s something for an estate planner for making sure that that’s written up in your wishes.

Whether that’s in a will or whether that’s in some kind of other legal document; I want my laptop to go to this person, and the username and password are in a sealed envelope underneath my desk or whatever that is.

I want to make sure that this person is the owner of all of my photographs, so the username and password is over here. You can say to a social network, “Dear social network, I’m dying, I have maybe three months to live. Please don’t use my data.” But again, they’re going to be like, “Well, you signed it. I’m sorry to say, but you signed the terms and conditions. You signed the end user licence agreement. And just because you’re approaching the end of life doesn’t mean that that agreement is null and void.”

AM: Does that mean that people are starting to take this into account more when they are preparing to death, writing wills.

AK: For sure. Absolutely. Oh my gosh, when did I, it was Digital Death Day, let’s see, when did I go to that first Digital Death Day. It must have been around 2012, I think. Yeah, 2012, I think, is when the very first digital death day came up. There’s a few researchers who have spearheaded this. One of whom is appropriately, she’s going to kill me for this, she’s appropriately named Elaine Kasket.

Talk about nominative determinism. I’ve never said that to her, by the way. But yeah, she wrote a book that’s called The Ghost in the Machine that I believe was published earlier this year which is about looking at the data and who you are and your rights over it.

And Digital Death Day was an early gathering of people just in the UK, who were thinking about this. The UK actually has been thinking a lot about, thinks a lot about death, weirdly. Like, it’s where Death Cafés started. Death Cafés are gatherings of people just in pubs or you know, down the street or in the park. People get together and just talk about death.

Not in a morbid way, but just like, “You know, what are your worries?” or “What do you think about what we should do with our data?” or you know, whatever. It’s just a form for people to talk about that particular subject.

But anyway, Digital Death Day was a gathering of I would say maybe 20 academics and practitioners who’d come together to talk about their research, how people view their data, how people view the end of life experience with data. How people view the ownership of their data. As well as people who had created apps that prompt you to think about these types of issues.

You know, where do you want, where are your usernames and passwords? And we’re starting to see with estate planners, whether they’re legal or otherwise planners, we're starting to see people prompting those types of questions as well, because you do not have a box of photographs underneath the bed moving forward any more. Very rarely do you have that.

You have, you have a phone, usually that's where most of it is, or you have an online service where you've put them.

Yeah, I find it so interesting, I frankly am obsessed with it.

Let us know what you think of the episode with a review or a comment wherever you listen to your podcasts.

Listen to more episodes of theScience Focus Podcast: