We were recently invited by the International Federation of Red Cross and Red Crescent to speculate, show evidence, and provoke their conference attendees to anticipate looming challenges and potentialities. We wanted to understand: What challenges might face the humanitarian and development sector in the near future?
At the end of April, I gave the opening talk at the TED 2017 conference ‘The Future You’ in Vancouver. Today, I am excited to finally be able to share it with you.
Over ten years ago, I did a project that explored scenarios of a ‘post-apocalyptic civilization’. It was a time when the rumblings of climate change had only just begun to be felt in the public domain. Today things are different. It’s hard to escape the news, certainly impossible to not experience the actual effects of extreme weather conditions, just one of the many signs of climate change.
Song of the Machine project as case study for exploring design ethnography practices.
The year has flown by! What should be a monthly update has now become a quarterly (perhaps even semi-annual) update, our attempt to share studio highlights, and a fleeting moment to reflect on what has happened and what we have learnt.
On the Consultancy front, we have been lucky to have the opportunity to work with some great clients this year. Couple of quick project hightlights that we can share publicly:
Future Cities Catapult / Family Day Out Programme
One of the most exciting projects we have been working on this year is with the Future Cities Catapultcalled ‘A Family Day Out Programme’. The project seeks to work with partially sighted and blind people to help identify the characteristics of future cities that will enrich their experience of it and develop potential cityscapes that would inspire them to make journeys into cities and around them. We have been through an extensive design research, horizon scanning and futurescaping process and are currently visualising some of the outcomes.
Museum of Future Government Services / PMO, UAE
We were lead creative consultants for the concept and scenario development of the Museum of Future Government Services commissioned by the Prime Minister’s Office of the UAE, working the incredible Tellart, Fabrica, Near Future Laboratory and Institute of the Future, spearheaded by Noah Raford. The project launched at the Government Summit, a global platform dedicated to the improvement and enhancement of government services and related opportunities. The six exhibits being shown at the Museum are immediately visually compelling, yet provocative, and ambitious visions of how services ranging from border control to health care to education could be delivered in the future, in an attempt to stimulate thought and action, from their leaders and civic officials in the UAE. Our colleagues at Tellart and Fabrica, working with the PMO, have done a remarkable job in translating concepts, developing elements, and ultimately executing the exhibits.
On the Lab front, currently two projects are keeping us on our toes.
Things that Fly and Watch Over You: Quadcopters, multirotors, positioning systems, and such other stuff has kept us occupied in the Lab, in huge amounts. Project Impossible is a beast that is simulteneously exciting and terrifying. One of the most fun part of the project is an opportunity to work with a host of amazingly talented people, all to be announced in an upcoming press conference.
IoTA: Internet of Things Academy: A full update on this project requires a separate blogpost, but suffice to say, we have made good progress. We are grateful to have a team of great people working with us: Gyorgyi Galik, Philipp Ronenberg, Martin Charlier and Daniel Pomlett. We have moved in a different direction from our initial proposal, but feel we now have a much clearer, far more exciting direction. Our focus is on people, on social and environmental concerns, and thinking of ways in which IoT can ultimately shape and influence legislation and policy. We are grateful for the incredible support of our partners Hugh Knowles and Louise Armstrong from the Forum for the Future and funders Nominet Trust and Founders Forum for Good, as well as the brillants folks at Suncorp who have been supporting our work. For regular updates follow @IoTAcademy on twitter or have a peek into our process on our tumblr.
Also on the Lab front, we were in India earlier this year, and have revisited Lilorann, with an renewed interest in Tactical Design and Tools for Critical Jugaad. We are in talks with several collaborators in the hope of realising a small thing this winter. Stay tuned.
Our Associate Tobias Revell has recently completed a commission ‘Monopoly of Legitimate Use‘ premiered at the Lighthouse Brighton, which we highly recommend making a trip for. Also, Yosuke Ushigome is currently developing a fascinating project “exploring high-speed and speculative trading of our bodily-harvested energy/data/knowledge/assets” to be exhibited in October in Tokyo.
TALKS & EXHIBITIONS
Keynote, Futureverything: I delievered a keynote at the Futureverything Festival in Manchester end of March. Titled ‘Valley of the Meatpuppets’, the talk explores the ethereal space where people, agents, thingbots, action heroes and big dogs coexist and how influence is designed within this space. I think the conference videos should go online soon. It was also great to exhibit the 5th Dimensional Camera and Open Informant at the Festival too.
Design and Violence, MoMA New York: We were invited by Paola Antonelli to contribute to their online show Design and Violence with a critical response to the work of Phil Ross. We wrote a short fiction piece exploring a future world where Mycotecture becomes a favoured material and what its implications might be.
V&A Friday Late: Candyce and I presented Dynamic Genetics vs Mann, followed by a series of sessions with the Synbio Tarot Cards at the V&A Friday Late for Synthetic Aesthetics. We had never run this sort of a session previously, but judging by the evening’s success are considering new avenues for such toolkits.
We will be showing Dynamic Genetics vs Mann at the DEAF Biennale in Rotterdam later this month as part of the ‘Blueprints for the Unknown’ Exhibition, and hoping that there will be a way for the project to be shown in the UK soon, perhaps where the project will resonate the most. I will also be giving a talk at the DIY ‘Altopia’ Seminar at the Biennale. I’ll be joining Tobias Revell at the Lighthouse to discuss his new work and explore themes of migration, borders, and networks. And I think that might be it, in terms of talks this year, apart from Chicago much later this year. Due to time contraints I have recently had to turn down few very exciting conference invitations for this year, but looking forward to it next year.
We enjoy teaching and our favourite form is intense workshops, which gives us an opportunity to set a brief, and a concetrated time with students to develop responses. We just wrapped up a workshop at HEAD, Geneva, with the Media Design MA students, working with them on a highly challenging brief titled ‘Failed States: Tactical Design for Uncertain Futures. Developed in collaboration with Justin Pickard, we invited students to design thoughtful responses to emerging political tensions at the intersection of migration, housing, climate change, robotics, surveillance, currency and finance, energy, public protest, and the hollowing out of the contemporary nation-state, for a near-future Switzerland. Needless to say, it was a highly energetic, inspiring week, and we’ll be writing a bit more about it soon.
This was meant to be brief, so I’ll stop. Just a quick final note to say that we are also considering new projects, collaborations and partnerships for 2015, so if you have something in mind, do drop us a line.
Adios, be well!
This essay was written for our project ‘Dynamic Genetics v Mann’ , exploring the future of synthetic biology.
A talk about the future of personal genomics, nationalised healthcare, synthetic biology and genetic crimes.
We recently finished a project Dynamic Genetics vs. Mann exploring the implications of synthetic biology and genomics in the context of future healthcare. We are thrilled to have Christina Agapakis reflect on the project in the context of genomic prediction, privacy, and piracy.
This is me
What if personalized medicine never happens? What if the promised therapies tailored to our unique genomes just never materialize? Although it seems inevitable, there is no guarantee that we will be able to precisely match treatments to individuals. For complex diseases with many associated genes interacting in changing environments, the statistical power to make therapeutic predictions currently remains elusive. What if we sequence the genome of every single person on earth and the data is still not big enough?
In such a future, will we still believe in genomic promises? Perhaps, unable to let go of the hope that our genes can predict our future health, we continue to demand access to our largely uninformative genetic code. Unable to find strong associations for complex and chronic diseases but still desperate for determinism, we might look for answers not only in the genes of our own cells but the genes of our microbial symbionts.
This hope might remain part of medical rituals, a statistical placebo for the post-genomic checkup. The doctor takes samples of your secretions and sends them to a genome sequencing company, the costs barely a blip on otherwise ballooning medical bills. You talk about your fears of aging, cancer, neurodegenerative diseases, antibiotic resistant bacteria. You discuss your parents and grandparents’ medical history. Your blood pressure, cholesterol, and blood sugar are measured. Risks are calculated. You should probably lose some weight, eat more vegetables, walk more. You should smoke less, eat less processed food, less sugar. You should take better care of yourself. You probably should have done this anyway. You go home with a reassuring list of percentages that put a number on the fundamental uncertainty about your future.
The sequencing company analyzes your DNA, bills your insurance company, and stores your data in the cloud. Your demographic information and health records are linked to your unique set of sequence variations. Associations are identified, risk percentages are modified. Sequences are patented. Progress (money) is made.
You continue to be anxious about privacy. You think, “if a company is telling me that my DNA data is me, then why should that company have so much access to me?” We are told that in our dangerous world we must give up some privacy for increased safety. For increased health we must give up some of our expectations about genetic privacy.
“Crimes of a Genetic Nature”
DNA is good for telling stories about the future. DNA as machomolecule, in control of our genetic destiny. DNA as code, programmable, controllable, readable, re-writable. Like other data-driven futures, DNA-based stories are stories about probability, risk, and control: risk of developing certain medical conditions and the control that DNA has over our biological characteristics. Risk that genetic information will be used to discriminate against us, risk that our DNA will be used to control what we are and what we can be.
Superflux is good at telling stories about the future, stories that help us connect with the abstractions of probabilities and the weirdness of our unevenly distributed futures. With Dynamic Genetics vs. Mann, Superflux tells a story about DNA, risk, and control, not with percentages and promises but through the carefully crafted evidence of a fictional patent infringement trial.
The story is set in Britain in the near future, when the UK’s National Health Service (NHS) has been privatized and transformed into National Health Insurance (NHI). The trial’s defendant, Arnold Mann, faced with unmanageable NHI premiums due to undetermined genetic risk factors, turns to black market gene therapy, replacing his risky genes with healthy sequences patented by the fictional biotech giant Dynamic Genetics. With these new genes, his insurance costs are decreased, but he is prosecuted for the DNA sequences that he now holds in his cells, sequences that he didn’t pay the right people for.
At first glance, DG v Mann seems to be a very familiar kind of future, especially for people who don’t live in the UK and don’t have an NHS. For many Americans, a story about an insurance company trying to use anything and everything to screw you over is not an unfamiliar fiction but an everyday fact of life. The idea that an insurance company could one day use your DNA sequences to justify increasing your premiums or deny you coverage is such a pervasive story in the American debates about gene sequencing that it was codified into law, outlawed by the 2008 Genetic Information Nondiscrimination Act. If anything, DG vs. Mann might give its first shock of weirdness with the notion that it could be weird for such corporate shenanigans to exist in the first place. Imagine a future where Americans think that privatized insurance is a frightening and ridiculous scenario!
This is one way that design fiction could begin to help us “bypass the established narratives about the present and future,” challenge us to see the present world from a new perspective, and teach us to challenge our assumptions about what is and what might be possible–both technologically and politically. Design fictions show technologies at the edge of speculation and reality, inviting us to imagine, question, and debate the applications and implications of new science and technology in a cultural context. Exploring genetic technologies in relation to government programs, the business of health care, and the ongoing debates about piracy and intellectual property allows for discussion not just about the function of the technology itself, but its inextricable relationships with power, politics, economics, and society.
Fictions give life to these complex relationships and give us a vocabulary to debate the kind of future we want (think of how often Gattaca used to come up in conversations about DNA sequencing). But while such stories are good at challenging our assumptions about how a technology might be used, rarely do they challenge the deeper assumptions about technological power and control.
What does the world look like when we bypass the established narratives of DNA as the of master of our readable and rewritable future? What if DG vs. Mann is actually a story about genetic indeterminacy?
“Good Source of 6 Vitamins & Minerals”
The DNA evidence in DG vs. Mann is not human readable. Strips of paper with tiny, indecipherable A’s, T’s, C’s and G’s highlight the regions of Arnold Mann’s genome that are infringing on Dynamic Genetic’s patents. Looking at these strips, we don’t know what diseases he was at risk for, how much of a burden he would one day be on the insurance pool, or even if the pirated gene therapy has actually changed his odds of developing the disease.
It’s possible that Mann’s risky sequences are part of the relatively small set of gene variants that are known to directly cause devastating diseases. But if Mann is an otherwise healthy adult, it’s much more likely that the NHI actuaries are looking for common gene variants that have been statistically associated with very common and very expensive diseases: type II diabetes, cancers, and cardiovascular disease.
What does it mean if you have, for example, a diabetes-associated sequence in your genome? In terms of real world health outcomes, the small changes in risk associated with any one such variant probably don’t mean much, especially compared to the big effects that environment and diet can have.
Indeed, it’s harder to imagine what these numbers might mean for your health than what they could mean for your health insurance. These associations provide an “objective” justification to what the insurance company wanted to do all along: get more money. As long as people still believe that DNA is in control of our biological destiny, these associations don’t actually have to be biologically meaningful in order to have a big effect.
What does it mean then to use gene therapy to change these risky gene sequences? Considering that for most health outcomes, zip code is a better predictor than genetic code, probably not much. But if an insurance company can use DNA sequences to justify charging more, then altering gene sequences isn’t necessarily about being healthier but simply appearing healthier to the risk calculators. The new variants are the genetic equivalent of sugary breakfast pastries fortified with vitamins and minerals, an unknown risk with a quantifiable veneer of “healthiness.”
Unlike Pop-Tarts, however, when it comes to deciding who gets affordable insurance coverage, such genetic spoofing might ironically be enough to translate to better health in the real world, where access to health care is much more important than DNA. For Arnold Mann, the potential dangers—medical and legal—of undergoing back-alley gene therapy is worth the risk in order to get affordable insurance. People have done weirder things for health care.
Polarized debates about the desirability of a new technology and its potential implications often oscillate between cheerful utopia and horrific dystopia. We discuss the promises and perils, the risks and rewards—opposite ends of a speculative spectrum. The real future, of course, is not simply one side or the other, happening instead somewhere in the messy in betweens, neither world-saving nor civilization-destroying.
But wether proposing utopia or dystopia, both sides of such debates grant technologies with an unexamined power to solve or create problems, what anthropologist Georgina Born calls an “unproblematic effectivity.” For debates about the future of biotechnologies, the power of DNA always remains at the center. When speculating about the future of a technology, it is worth asking: what if it just doesn’t work that way?
Stories about the future can open up new possibilities, new avenues for debate, breaking free from the “half-pipe of doom” between utopia and dystopia. We can imagine more complex, weird, ambivalent futures—stories where technological promises come unraveled, their technical underpinnings explored, their cultural appeal examined.
We want to know the future. We want to know that in the future we will be able to know more than we do now. We want our futures populated with competent scientists, always in control, able to fully understand and accurately predict. We want DNA to be able to justify inequalities in health, we want DNA to give us answers, to tell our future.
DNA is obviously an important molecule, but too many of our social problems and technological dreams rely on the false promise of genetic determinism. DNA is not all-powerful. Data is not enough. Health is biological, but also social, political, economic. Biology is complex. Biology is messy. For better health, we need less sequencing and more support. For better technological promises, we need less control and messier futures.
Over at the Superflux Lab, for the past few months, we’ve been engaged in a research project exploring the politcal and economic implications of synthetic biology and gene therapy. Whilst the research continues, one realisation of the project is now being exhibited at Ars Electronica, and so it’s great to be able to finally share what we’re been working on.
For full information about this project visit our work page.
PRESS RELEASE, SUPERFLUX: DYNAMIC GENETICS vs. MANN
From tissue biopsy samples to an improvised CO2 incubator used in the manufacture of counterfeit genetic therapies, ‘Dynamic Genetics vs. Mann’ presents a body of evidence from a fictional court case. Unfolding as a rich narrative, this new project from Superflux explores a world where designed and patented genetic material enters the human body through illicit means.
This work forms part of ‘Project Genesis’, curator Matthew Gardiner’s flagship exhibition at the Ars Electronica Centre in Linz, Austria. It opened to the public on Friday 2nd August, and is part of the Ars Electronica festival in September 2013.
‘Dynamic Genetics v Mann’ was commissioned by Design Interactions Research Department at the Royal College of Art, and has been realised as part of Studiolab; a three-year initiative funded by the European Commission 7th Framework Program.
History has shown that political and economic forces exert as great an influence on the development and application of technology as the aspirations of scientists and engineers. ‘Dynamic Genetics vs. Mann’ explores the technological trajectory of synthetic biology, extrapolating from current social, economic and political trends so as to locate the technology within a broader cultural landscape.
This project imagines a world in which synthetic biology and gene therapy have moved from the lab to the marketplace. In this world, the responsibilities of the state have shifted from healthcare to the provision of health insurance. By calculating the likely impact of specific gene combinations, insurance rates are adjusted on a person-by-person basis, ensuring that individual ‘contributions’ more accurately reflect the potential costs associated with their genome.
What new legal and economic models might emerge under these conditions? How will intellectual property be applied and policed when designed genetic material makes its way into people’s bodies and their lives? Who are the winners and losers in such a world?
The primary plot of ‘Dynamic Genetics vs. Mann’ reveals the increasing vulnerability of protagonist Arnold Mann, an ‘ordinary citizen’ whose insurance contributions spike dramatically after a regulatory spit test from the NHI (National Health Insurance) reveals elevated risks across a range of chronic health conditions in his genetic profile. Caught between an inflated health levy and the staggering cost of private treatment, a desperate Arnold turns to a black market clinic for a gene upgrade. This treatment will reduce his health insurance bill at the cost of permanently modifying his DNA with patented, but unlicensed therapy.
The collection of evidence presented in the exhibition, including an interrogation video, alongside other corroboratory, forensic, scientific, digital and material evidences, make a strong case against Mann, who is accused by Dynamic Genetics, a major corporation in the genetic therapy industry, of illegally possessing their proprietary DNA. Items including tissue biopsy samples, covert surveillance photographs, genetic search warrant, ‘found’ documents, newspaper clippings, and an improvised CO2 incubator, are presented by G5P, a private security agency hired by Dynamic Genetics to carry out the investigation.
Visitors to the work are encouraged to explore the body of evidence, piecing together this foreboding story that questions the ethical and economic implications of the new forms of genetic technology that are quietly transforming our world.
The project ‘Dynamic Genetics vs. Mann’ takes place in the United Kingdom, following government efforts to privatise and outsource services previously undertaken by the NHS (National Health Service). The project also takes into account large-scale citizen DNA databases, big data, and the growing popularity of companies like 23andMe, which allow customers to exchange small samples of their saliva for access to information about likely health risks based on their genetic information – with many unwittingly ceding their genetic privacy in the process. We are already witnessing the rise in private companies’ attempts to patent genetics in order to secure profits as well as established industries going to evermore extreme lengths to protect intellectual property.
Projecting forward from our current economic and political landscape, these and other developments provide governments and large corporations with the opportunity to create proprietary health-related services, often at the expense of the privacy, rights, and individual agency of ordinary citizens.
Dynamic Genetics vs. Mann is project by Jon Ardern and Anab Jain from Superflux, London, UK. The project has been realised with the valuable creative support of Megan Rodger, Minsung Wang, Raphael Pluvinage, Patrick Stevenson-Keating, Elvira Grob, Tobias Revell and Joe Duggan.
The designers would like to thank scientific advisors Cathal Garvey and Christina Agapakis for their support and critique, and Anthony Dunne, Fiona Raby, Rob Carlson and David Benque for their encouragement throughout the project.
All the evidences from the case will be presented on a dedicated website, which we will share very soon. Meanwhile if you’d like to know more, drop us a line at firstname.lastname@example.org.
Evidences from a fictional courtcase Dynamic Genetics versus Mann help imagine some of the economic and political implications of synthetic biology and gene therapy.