Adrian Smith: Residents living around Plaça del Sol joke that theirs is the only square where, despite the name, rain is preferable. Rain means fewer people gather to socialise and drink, reducing noise for the flats overlooking the square. Residents know this with considerable precision because they’ve developed a digital platform for measuring noise levels and mobilising action. I was told the joke by Remei, one of the residents who, with her ‘citizen scientist’ neighbours, are challenging assumptions about Big Data and the Smart City.

The Smart City and data sovereignty

The Smart City is an alluring prospect for many city leaders. Even if you haven’t heard of it, you may have already joined in by looking up bus movements on your phone, accessing Council services online or learning about air contamination levels. By inserting sensors across city infrastructures and creating new data sources – including citizens via their mobile devices – Smart City managers can apply Big Data analysis to monitor and anticipate urban phenomena in new ways, and, so the argument goes, efficiently manage urban activity for the benefit of ‘smart citizens’.

Barcelona has been a pioneering Smart City. The Council’s business partners have been installing sensors and opening data platforms for years. Not everyone is comfortable with this technocratic turn. After Ada Colau was elected Mayor on a mandate of democratising the city and putting citizens centre-stage, digital policy has sought to go ‘beyond the Smart City’. Chief Technology Officer Francesca Bria is opening digital platforms to greater citizen participation and oversight. Worried that the city’s knowledge was being ceded to tech vendors, the Council now promotes technological sovereignty.

On the surface, the noise project in Plaça del Sol is an example of such sovereignty. It even features in Council presentations. Look more deeply, however, and it becomes apparent that neighbourhood activists are really appropriating new technologies into the old-fashioned politics of community development.

Community developments

Plaça de Sol has always been a meeting place. But as the neighbourhood of Gràcia has changed, so the intensity and character of socialising in the square has altered. More bars, restaurants, hotels, tourists and youngsters have arrived, and Plaça del Sol’s long-standing position as venue for large, noisy groups drinking late into the night has become more entrenched. For years, resident complaints to the Council fell on deaf ears. For the Council, Gràcia signified an open, welcoming city and leisure economy. Residents I spoke with were proud of their vibrant neighbourhood. But they recalled a more convivial square, with kids playing games and families and friends socialising. Visitors attracted by Gràcia’s atmosphere also contributed to it, but residents in Plaça del Sol felt this had become a nuisance. It is a story familiar to many cities. Much urban politics turns on the negotiation of convivial uses of space.

What made Plaça del Sol stand out can be traced to a group of technology activists who got in touch with residents early in 2017. The activists were seeking participants in their project called Making Sense, which sought to resurrect a struggling ‘Smart Citizen Kit’ for environmental monitoring. The idea was to provide residents with the tools to measure noise levels, compare them with officially permissible levels, and reduce noise in the square. More than 40 neighbours signed up and installed 25 sensors on balconies and inside apartments.

The neighbours had what project coordinator Mara Balestrini from Ideas for Change calls ‘a matter of concern’. The earlier Smart Citizen Kit had begun as a technological solution looking for a problem: a crowd-funded gadget for measuring pollution, whose data users could upload to a web-platform for comparison with information from other users. Early adopters found the technology trickier to install than developers had presumed. Even successful users stopped monitoring because there was little community purpose. A new approach was needed. Noise in Plaça del Sol provided a problem for this technology fix.

Through meetings and workshops residents learnt about noise monitoring, and, importantly, activists learnt how to make technology matter for residents. The noise data they generated, unsurprisingly, exceeded norms recommended by both the World Health Organisation and municipal guidelines. Residents were codifying something already known: their square is very noisy. However, in rendering their experience into data, these citizen scientists could also compare their experience with official noise levels, refer to scientific studies about health impacts, and correlate levels to different activities in the square during the day and night.

The project decided to compare their square with other places in the city. At this point, they discovered the Council’s Sentilo Smart City platform already included a noise monitor in their square. Officials had been monitoring noise but not publicising the open data. Presented with citizen data, officials initially challenged the competence of resident monitoring, even though official data confirmed a noise problem. But as Rosa, one of the residents, said to me, “This is my data. They cannot deny it”.

Thick data

Residents were learning that data is rarely neutral. The kinds of data gathered, the methods used, how it gets interpreted, what gets overlooked, the context in which it is generated, and by whom, and what to do as a result, are all choices that shape the facts of a matter. For experts building Big Data city platforms, one sensor in one square is simply a data point. On the other side of that point, however, are residents connecting that data to life in all its richness in their square. Anthropologist Clifford Geertz argued many years ago that situations can only be made meaningful through ‘thick description’. Applied to the Smart City, this means data cannot really be explained and used without understanding the contexts in which it arises and gets used. Data can only mobilise people and change things when it becomes thick with social meaning.

Noise data in Plaça del Sol was becoming thick with social meaning. Collective data gathering proved more potent than decibel levels alone: it was simultaneously mobilising people into changing the situation. Noise was no longer an individual problem, but a collective issue. And it was no longer just noise. The data project arose through face-to-face meetings in a physical workshop space. Importantly, this meant that neighbours got to know one another better, and had reasons for discussing life in the square when they bumped into one another.

Attention turned to solutions. A citizen assembly convened in the square one weekend publicised the campaign and discuss ideas with passers-by. Some people wanted the local police to impose fines on noisy drinkers, whereas others were wary of heavy-handed approaches. Some suggested installing a children’s playground. Architects helped locals examine material changes that could dampen sound.

The Council response has been cautious. New flowerbeds along one side of the square remove steps where groups used to sit and drink. Banners and community police officers remind people to respect the neighbourhood. The Council recently announced plans for a movable playground (whose occupation of the centre of the square can be removed for events, like the Festa Major de Gràcia). Residents will be able to monitor how these interventions change noise in the square. Their demands confront an established leisure economy. As local councillor Robert Soro explained to me, convivial uses have also to address the interests of bar owners, public space managers, tourism, commerce, and others. Beyond economic issues are questions of rights to public space, young peoples’ needs to socialise, neighbouring squares worried about displaced activity, the Council’s vision for Gràcia, and of course, the residents suffering the noise.

The politics beneath Smart City platforms

For the Council, technology activists, and residents of Plaça del Sol, data alone cannot solve their issues. Data cannot transcend the lively and contradictory social worlds that it measures. If data is to act then it needs ultimately to be brought back into those generative social contexts – which, as Jordi Giró at the Catalan Confederation of Neighbourhood Associations reminds us, means cultivating people skills and political capacity. Going beyond the Smart City demands something its technocratic efficiency is supposed to make redundant: investment in old-fashioned, street-level skills in community development. Technology vendors cannot sell such skills. They are cultivated through the kinds of community activism that first brought Ada Colau to prominence, and eventually into office.

Adrian Smith is Professor of Technology and Society at the Science Policy Research Unit at the University of Sussex, and Visiting Professor at the Centro de Innovación en Tecnología para el Desarrollo Humano at the Universidad Politécnica de Madrid. This blog comes from a European research project analysing the knowledge politics of smart urbanism. He is on Twitter as @smithadrianpaul

Reposted from The Guardian, with the permission of the author.

Image: Making Sense (Talking about noise in Plaça del Sol)

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Ruby Irene Pratka: According to the World Health Organization, more than 420 million people around the world — including over 29 million Americans — have diabetes. People with diabetes are unable to naturally produce sufficient insulin, a hormone that regulates blood sugar in the body. Over 90 years ago, Canadian scientists discovered a way to extract the hormone from pigs and cattle and purify it for human use. Then, in the 1970s, scientists used a new “recombitant DNA rechnology” using human genes and bacteria to make insulin.

Problem solved, right? Wrong, say increasing number of doctors in the U.S. Insulin is one of fewer and fewer drugs for which no generic version is available. According to an NPR report from 2015, as these more expensive, new drugs became available, the older ones left the market. The bill for uninsured patients can be several hundred dollars per month — as a result, one Baltimore doctor told NPR that some of his patients had stopped taking the drug altogether, putting their health at risk.

Anthony DiFranco and his team at Oakland’s Counter Culture Labs are hoping to change that. DiFranco is a medical researcher, self-described bio-hacker, and cofounder of the Open Insulin Project. He has Type 1 diabetes himself. DiFranco and his team are working on a protocol to extract insulin from genetically engineered yeast cells and produce a generic drug at a cost of around $10 for a month’s supply. He says users could even eventually produce the drug in their homes. The project has created a definite buzz, raising nearly $17,000 in a crowdfunding campaign on the science-oriented crowdfunding platform Experiment.

Shareable caught up with DiFranco to learn more about the Open Insulin Project and the team’s mission to make diabetes management affordable.

Ruby Irene Pratka: How long have you been involved with the biohacking movement?

Anthony Di Franco: I got involved first in about 2011, with the founding of Counter Culture Labs. A year before that, I had worked on the founding of our sister hacker space, which deals with computer technology, and I wanted to explore ideas related to diabetes. A friend of mine had been doing research on the security of insulin pumps, and I originally wanted to [build] a DIY secure pump, but then people started thinking about founding a biohacking space, and I started rethinking my original idea.

Why insulin?

At the time, I had already had diabetes for five years. I had seen that progress was essentially non-existent — now it’s been 12 years and that hasn’t really changed. One major vendor did release a more secure [insulin] pump, but that was because hackers had pulled ahead and were putting pressure on them. If you want anything done you have to do it yourself. While I was looking into that, I saw a blog post on do-it-yourself thyroid hormones and met with a researcher who was able to get me up to speed on the chemical aspects of making [hormones] manually and potentially automating the process further down the road. We had a successful crowdfunding campaign and started actual lab work in January 2016.

Considering that close to 30 million people in the US alone live with this disease, you would think someone would have tried this before now. Why haven’t they?

I can only speculate on the reason, but it’s undoubtedly a lot of work. Many people seem to be afraid of having to deal with regulatory requirements that cost big companies millions. Insulin is one of the last holdouts where there is no generic version of the drug after more than 90 years. There are low-cost producers in other countries, but Western producers are very good at holding onto the [domestic] market. In some cases, drug companies have paid generic manufacturers not to produce drugs. The big producers are determined to keep their oligopoly.

Chemically, what is insulin? What are you building in the lab?

It’s a very small protein. In the lab, you need to introduce a gene into some organism so it creates the protein, and then find some way to extract it. We started with a protocol to make it in E. coli bacteria, but bacteria lack the sophistication to modify or secrete proteins, so the protein we extract is proinsulin, which still needs to be modified into the active form in the lab. We were looking at just making the proinsulin and making small changes to it that would allow us to complete the other steps in vitro… Now that we have some people on board with expertise in yeast engineering, we’re thinking about moving [the production] to yeast. With yeast cells, you can engineer them to secrete insulin, instead of having to extract proinsulin from dead cell debris [as with the bacteria cells]. Then you can purify [the insulin] from yeast, which is a relatively simple task. That’s what we’re focusing on. We’re still just making proinsulin as a first step and working on engineering the yeast to do everything for us. Our final product will be a strain of yeast cells that secretes insulin. Once we succeed, we will share what we come up with and build something that works for the long term.

Why is it so expensive? 

Markets are the main reason. It’s not that expensive to produce. For me, a month’s supply would cost about $10 to produce, but I’m paying about $1,000 before insurance and still $75 after insurance. If people were paying $15 for a drug that cost $10 to produce, that would still be a very healthy profit margin.

Tell us a bit about the work that has gone into this.

Most of it was just persistence. Some weeks there was very little to do in the lab and some weeks there was much more. Right now the yeast experts are the ones that are always in the lab, and I’m doing the organizing. It has been a lot of work, and we have had quite a few people coming and going, but it’s important enough to enough people that we always have enough people to keep moving it forward. A lot of our volunteers have just finished school and have the perfect science background, and they see it as doing something cool for a good cause.

What remains to be done to get the yeast-produced insulin into circulation?

We need to compete the yeast engineering, figure out a technique for purifying it and then look at the next step — how to set up a low-cost manufacturing operation and get over all the regulatory hurdles. That would require more money and more organizational sophistication than we have now, but hopefully by then our case will speak for itself and we will be able to prove we have the technology and it is usable. It will not be a for-profit undertaking.

How do you plan to test this? 

First we’ll have to verify that we have created insulin, then we’ll use standard techniques to purify it. From a regulatory point of view, if you’re making an existing drug, you just have to demonstrate that you made the right drug, you don’t have to demonstrate its efficacy all over again. We would just have to show that we made the right [chemical] sequence. We may have to do a receptor-binding study but we’re not going to worry about that right now — we will just focus on making a form of insulin that has been in common use.

A lot of the media coverage of your efforts has referred to “home-brewed insulin”— is that accurate? Are people going to be able to cook this up in their homes?

I don’t know if it will be economical to produce it in your home, but it’s not out of the question. At some point, someone will develop a protein-purifying machine which can be distributed to pharmacists or taken out into the developing world. The technology exists but the engineering work still has to be done.

What is your timeline? When do you hope to be able to distribute generic insulin?

Three or four years from now is a realistic timeline, but I hope we can do it a year or two sooner. I’m hoping we’ll have the yeast strain that does all the work soon, and then we’ll raise money to actually produce the product.

How do you react to the wave of support that you’ve gotten via the crowdfunding initiative?

It has been really encouraging. Although some people have dismissed the whole thing as impractical, a lot of other people have seen the value in it.

What motivates you about this experience?

It has confirmed what I know as a person with diabetes. The establishment views and treats diabetes and diabetes patients as a means of making money, and not as a group of people who need to be cured of an ailment. People are desperate for something they can afford. A significant number of the people who supported us have been people with diabetes who couldn’t afford their own insulin. They gave us 25 bucks to see if we could come up an alternative to these oligopolies. You realize how many people are desperate even in the Western world. By making the market competitive for insulin and eliminating these absurd profit margins, we want to contribute to the realignment of incentives in health care. We’re watching people slowly degenerate due to this condition [and] I’m skeptical about whether the economic landscape incentivizes a cure in the short term. If projects like ours give people access to drugs, in the long term they collapse the market and [incentivize] getting a cure out there.

Header photo courtesy of Anthony Di Franco.

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Towards an Agreement on Biomedical Research and Development for the Public Benefit:
Academia’s Urgent Call to Action

As members of the international academic and scientific community, we call upon the member states of the World Health Organisation (WHO) to negotiate a much overdue global research and development (R&D) agreement to ensure innovation and access to affordable vaccines, medicines and life-saving technologies for all.

In an open letter in 2008, leading academics, researchers and scientists, including many of us, urged universities and research institutes to set policies for research and technology transfer that serve the public good, while calling on the WHO’s Intergovernmental Working Group on Public Health, Innovation, and Intellectual Property to find new mechanisms to address a failing system of R&D on medicine and health technologies.

In 2012, the WHO’s Consultative Expert Working Group on Research and Development: Financing and Coordination (CEWG) stated that the way to truly address the systemic issues causing the crisis in global health today would be to work towards a legally binding global biomedical R&D agreement. This recommendation was supported by many member states. However, opposition by a few led to the subsequent World Health Assemblies postponing the discussions of an agreement until an unspecified date.

After over 10 years of debate at WHO, a number of initiatives have been developed and put into practice proving that a different way of implementing biomedical R&D is possible. Projects like the the Drugs for Neglected Diseases Initiative have shown that patient-driven innovation is possible at affordable cost and show that claims that it takes $2.56 billion to produce a drug are a myth. The Medicines Patent Pool has shown that a collaborative approach to intellectual property can speed up the availability of affordable HIV medicines in resource poor settings.

Yet the current system continues to fail people. New Hepatitis C cures are marketed at an exorbitant $1,000 per pill. A generic drug treating toxoplasmosis saw a price increase of 5,000% overnight. Breast cancer patients in the UK are unable to access treatment and we are proving unable to stimulate real innovation to combat antimicrobial resistance. The current biomedical R&D system is no longer just failing the poor, it is failing us all.

There is a lack of sufficient research funding for neglected tropical diseases (such as sleeping sickness, and Chagas’ disease), chronic diseases, and diseases for which return on investment cannot be guaranteed (such as multi-drug resistant tuberculosis). The international system is going in the wrong direction by strengthening intellectual property rights – with the Trans Pacific Partnership Agreement as a lead example – that further advance corporate control over biomedical R&D. Preserving patent monopolies as the primary incentive for medical R&D results in exorbitant prices for medicines and medical technologies which endanger public health budgets and impoverish families.

Innovation has slowed as the overproduction of “me too” drugs has been incentivised, and legal restrictions have proliferated impeding the free flow of information for scientific progress. Patent monopolies increasingly enable rising drug prices, without any corresponding increase in innovation. We have witnessed stagnation in the face of public health emergencies. In the case of the tragic Ebola epidemic, governments and private companies allowed potential vaccines and treatments to remain in preclinical development for over a decade prior to the outbreak because there was no market incentive to invest in treatments for diseases limited to poor countries. As noted by the WHO-commissioned Report of the Ebola Interim Assessment Panel in July 2015, it was “a defining moment for the governance of the entire global health system.”

A different system, based on principles of open access, open knowledge, open sharing and fair price, as well as incentives and mechanisms to encourage research and development of essential medicines according to needs of people worldwide, is possible. There are mechanisms being used that show great potential including prize funds, patent pools, and open collaborative approaches. However, the initiatives are fragmented and lack coherence. A global agreement for an equitable biomedical R&D system can provide a much needed structure. It can provide guiding principles which can move us to a system that incentivizes research and technology transfer based on global health needs and recognizes the human right to health.

Now, more than ever, we must act. As academics, researchers and scientists it is our responsibility to generate and transmit knowledge. We have a unique role to promote innovation in many fields and to ensure that our innovations are used to benefit the public. In no field are the moral imperatives to do so as clear as they are in medicine. At a time of huge progress in scientific research we are deeply concerned about the ability of the existing system to translate investment into better global health.

We are therefore calling on WHO Member States to seriously address this urgent situation. Future meetings should advance and inform discussions on an agreement that will support a coherent, sustainable and needs-driven approach to biomedical research and development for all.

Please note, this text was first published in November 2015 and was slightly updated in November 2016 to ensure ongoing use.

Signatories

Joseph E. Stiglitz, Nobel Laureate, Member of the National Academy of Science, Corresponding Fellow, Royal Society.

Sir John Sulston, Nobel Laureate, Fellow of the Royal Society

Prof John S Yudkin MD FRCP, Emeritus Professor of Medicine, University College London

Warren Kaplan, PhD, JD, MPH: Center for Global Health & Development/Boston University School of Public Health

Prof Brook Baker, Professor of Law, Northeastern University School of Law

Amy Kapczynski, JD, MA, MPhil, AB: Professor of Law; Faculty Director Global Health Justice Partnership, Yale Law School

Benjamin Coriat, Professeur des Universités Faculté des Sciences Economiques. Université Paris 13. Sorbonne Paris Cité, France

Michael Hopkins, PhD, Senior Lecturer (SPRU – Science Policy Research Unit, Business and Management), Sussex University, UK

Dean Baker, Co-Director, Center for Economic and Policy Research

Ulf Landegren, Professor of Molecular Medicine, Uppsala University, Sweden

Philip Oxhorn, Professor of Political Science and Founding Director of Institute for Study of International Development, McGill

Dr. E. Richard Gold, Associate Dean (Graduate Studies), Vice-doyen aux études supérieures

Rachel Kiddell-Monroe, Professor of Practice, ISID, McGill University

Prof Madhukar Pai, MD, PhD, Professor of Epidemiology, McGill University

Dr. Aaron Kesselhiem, MD JD MPH Associate Professor of Medicine at Harvard Medical School; Faculty Member at Brigham and Women’s Hospital

View the current list of over 450 Academic Signatures of the letter

View all current Signatures of the letter

See original post and sign to call on the WHO to negotiate a global R&D agreement now!

Photo by National Institutes of Health (NIH)

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“Between the 15th and 19th centuries, the rich and the powerful fenced off commonly held land and transformed it into private property. Land switched from a source of subsistence to a source of profit, and small farmers were relegated to wage laborers. In Das Kapital, Marx described the process by coining the term land-grabbing. To British historian E.P. Thompson, it was “a plain enough case of class robbery.”

More recently, a similar enclosure movement has taken place. This time, the fenced-off commodity is life-saving medicine. Playing the role of modern-day lords of the manor are pharmaceutical corporations, which have taken a good that was once considered off-limits for private profiteering and turned it into an expensive commodity. Instead of displacing small landholders, this enclosure movement causes suffering and death: Billions of people across the globe go without essential medicines, and 10 million die each year as a result.

Many people curse the for-profit medicine industry. But few know that the enclosure erected around affordable medicines is both relatively new and artificially imposed. For nearly all of human history, attempting to corner the markets on affordable medicines has been considered both immoral and illegal.

It’s time now to reclaim this commons, and reestablish medicines as a public good.

Most of us define public goods broadly. We use the term to refer to benefits like law enforcement, street lights, and mass transit, which are collectively provided and deliver shared value to all. Economists narrow down that definition somewhat, saying that public goods are non-rivalrous and non-excludable in their consumption.

Non-rivalrous means that any one person can benefit from a good without reducing others’ opportunity to benefit as well. My eating an apple prevents you from consuming it, so that’s a rivalrous good. But I can watch the same TV show as you without lessening your opportunity to enjoy it as well—that’s non-rivalrous.

Non-excludable means what it sounds like: A person cannot be prevented from consuming the good in question. Clean air is a good that can be enjoyed by all without the possibility of denying access to those who don’t register or pay a fee. But access to a private swimming pool is an excludable good. The classic example of a non-rivalrous, non-excludable public good is a lighthouse: One ship benefitting from its warning doesn’t subtract from any other ships’ chances of enjoying a similar benefit, and there’s no practical way of limiting the lighthouse’s warnings to a select few.

As the English enclosure movement proved, exclusivity can be artificially created by literally or figuratively walling off common access. Exclusivity can be undone as well: The modern open-source software movement takes a good that some have tried to make exclusive—software code—and freely shares it, leading to a plethora of creative developments.

In terms of medicines, an individual pill is rivalrous, but the details of the formula for creating that pill are not. Knowledge is a classic public good, in that it can be shared widely without penalty to the original owner. As Thomas Jefferson said, “He who receives an idea from me, receives instruction himself without lessening me; as he who lights his taper at mine, receives light without darkening me.”

The public-health implications of access to medicines generate another core quality of public goods: positive externalities.

One person’s consumption of an essential medicine provides clear benefits beyond the direct consumer. Vaccines, for example, prevent the recipient both from getting ill and from spreading the disease to others. If a society vaccinates widely enough, the chain of disease transmission is broken, leading to the quintessential public good of mass immunity. Global distribution of the smallpox vaccine, for example, has led to the eradication of a disease that once infected 50 million people a year.

Even less obviously social medicines allow their recipients to better contribute to the social fabric and economic productivity of their communities. These medicines save costs for the broader society, too. When a diabetic takes insulin or a person with a risk for heart disease takes cholesterol-reducing medicine, they not only function better: They also lower their prospects of needing more expensive medical treatment, which is a cost often shared across societies.

Conversely, a lack of access to medicine causes enormous social problems in terms of contagion and economy-depressing illnesses.

So it’s little wonder that, for nearly all of human history, societies have treated medicine as a commonly held benefit. Until well past the middle of the 20th century, few countries allowed individuals or companies to hold exclusive rights to produce medicines. And governments have long been involved early and often in the pharmaceutical industry, creating the very opposite of a laissez-faire market. Most industrialized governments tightly regulate the production and distribution of medicine, while actively promoting vaccinations and encouraging safe use of other medicines. Governments are both leading funders of medicine research and top purchasers of the end products of that research.

When governments don’t take a sufficiently activist role in the field of medicines, public opinion pushes them further. In the 1990s and 2000s, advocates gave voice to passionate outrage over the devastating human cost of patent-priced HIV/AIDS medicines, which limited access to sufferers who could afford expensive treatments. US activists threw the ashes of AIDS victims on the lawn of the White House, while African activists called treatment-resistant government ministers murderers. The protests led to the dismantling of patent price barriers—and then to massive public programs to distribute the medicine at low or no cost.

Among governments and the public alike, medicines continue to be treated as a good quite distinct from consumer items like cell phones or flat-screen TVs. A human right to access essential medicines has found its way into international treaties and national constitutions. A moral claim for universal access to essential medicines has been put forth not only by faith-based organizations and civil society actors, but also by many drug developers themselves. Jonas Salk, for example, declined to pursue a patent for the polio vaccine, saying the patent belonged to the people. The creator of the first synthetic malaria vaccine donated the patent to the World Health Organization.

As Salk said in 1952: “Would you patent the sun?”

Photo by Victoria Reay

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