Are today’s most significant science projects going on in your neighbour’s kitchen? A new Science Museum exhibition about DIY engineering and democratic science finds out more.
Tim Omer is a successful IT consultant who lives in south London. Yet in every spare moment, you’ll find him working on an engineering project that he hopes is going to change his life. Omer has Type 1 diabetes, and his goal is to build an artificial pancreas that will keep his blood sugar in check.
“Official solutions are taking too long, and sometimes never deliver,” Omer says. “I want to use the technology and the data we have, to help myself and others manage our diabetes - for better health and quality of life.”
Far from being a rogue scientist, Omer is part of a worldwide movement. Living with Type 1 diabetes means a daily responsibility to monitor your blood sugar and inject with insulin accordingly. Omer and a network of others are taking that responsibility a step further, developing tools, apps and hacks to help them manage their condition.
Omer’s story features in the forthcoming Beyond the Lab exhibition at London’s Science Museum, which showcases examples of DIY science and engineering occurring in homes, gardens and communities rather than workshops and university labs. Spurred by new technology, computer power and social media, citizen science is developing a greater traction than ever before.
Curator Louis Buckley has uncovered intriguing stories of invention and ingenuity for the exhibition that reveal Europe to be a crucible for DIY science. “We’ve identified pretty extraordinary people pursuing projects that you would expect professionals to be doing,” he explains.
Omer has already developed a method for hacking the battery to his continuous glucose monitor, so that he can renew it himself every six months instead of buying the official replacements at £700 a year.
Elsewhere in the diabetes community, Nightscout is a hack widely used by parents of children with Type 1 diabetes. Standard off-the-shelf glucose monitors only allow the wearer to view the data they collect, but the Nightscout hack allows that information to be intercepted and accessed via the cloud. This illicit modification has had an interesting outcome, as Buckley explains: “The manufacturer has now created an add-on that does the same thing legally. It’s an example of an unauthorised use driving change.”
A sense of power shifting towards citizens is evident in many of the projects featured in the show. Omer feels that empowerment and control are essential: “What I’d like to have is a solution that works how I need it and not something where I’m told what I need.”
What about the risks? Buckley says: “Doctors don’t approve of what Tim is doing, but when you’re experimenting on your own body, as Tim is, you can take risks that professional researchers and manufacturers can’t.” However, he says Omer is acutely aware of the issue of sharing such experiments on the Internet. “People like Tim have often deliberately shared only the broad principles, or packaged it up to a technical level so a novice couldn’t do it. It is a problem the community are aware of and are taking steps to keep people safe.”
The potential power of shared information is seen in another project in Beyond the Lab. In a community laboratory in Amsterdam, anyone can access a set of standard molecular biology tools and machinery.
“There are free, open-source plans available online for building DIY microscopes, incubators and spectrometers,” explains Buckley. The benefit is that it can bring affordable lab capacity to places in the world where research resources are limited.
A potential downside, however, is that someone could start carrying out genetic engineering experiments under the official radar. For this reason, as Buckley says, a lot of attention is given to scrutinising and assessing DIY biology labs, especially across the US. “They are all monitored by the security services,” he says, “but most professional researchers think the risks are actually overblown.”
In the Amsterdam lab, the search for new antibiotics is one focus. Participants screen soil, plant and flower extracts, incubating them with bacterial cultures and looking for antibacterial activity. Pieter van Boheemen, who heads the Open Wetlab project, has high hopes: “I believe citizens can crowdsource a new antibiotic,” he says.
Surely the big pharma companies are already doing all this on an industrial scale? “Given how serious the challenge is with antibiotic resistance, we need as much research as possible,” Buckley says. “If you have people all over the world looking at a whole range of different soils, plants and natural materials for antibiotics, you’ve got a huge dataset - far more samples than any individual research groups could assemble.”
The power of the crowd runs through several projects in the exhibition. The Mosquito Atlas is a Berlin-based initiative run by professional scientist Doreen Walther. She has built up a database of 30,000 mosquitoes, including invasive species implicated in transmitting disease, and her mosquito maps now help inform public health policy. It all came about through people power.
“Doreen hit the headlines when she identified a new invasive mosquito species in Germany,” explains Buckley. “People spontaneously started sending her mosquitoes, and she realised, ‘wow, I can use this!’ Now citizens can help the project by catching mosquitoes in their town, freezing them and sending them in. It’s caught on in a really big way.”
What’s the motivation to get involved? Buckley thinks it’s the chance to use time or resources to help with cutting-edge scientific research, as well as the sense of community. “Often citizen science projects have a strong online social network,” he says.
Online communities are vital to another featured project, a web platform called Patient Innovation, based in Portugal. While many patient forums exist to allow peer-to-peer support, this takes the idea one step further. “It gives a crossover between professionals and patients by gathering treatments and ideas from patients and care-givers, and then reviewing their safety with medical professionals,” Buckley explains. The ideas can then be translated and shared for people to use and comment.
The founders of Patient Innovation hope to support therapeutic innovations - perhaps through advising on setting up a social enterprise. For someone like Tim Omer, could this provide a way to work within the system with his diabetes inventions?
“Well, Tim doesn’t want to be outside the mainstream,” says Buckley. “He wants to make his inventions as safe and accessible as possible. It’s more frustration that there is technology out there to make people’s lives better, but it’s not authorised or permitted.”
The desire to bring about change is a clear motivation in many citizen science projects covered in the exhibition. Shazia Ali-Webber campaigns for cleaner air in London, where nitrogen dioxide levels frequently breach World Health Organization safe levels.
“Shazia uses a range of different sensors to measure air pollution in the area where she lives,” explains Buckley. There are already air-monitoring stations run by researchers and the local council, but the I Love Clean Air campaign has collected data on a much more detailed level.
The results are useful in two ways. “You can see exactly the exposure on local streets,” says Buckley. “You can use that information to inform your own behaviour, by changing your route to work or school. But you can also use it as evidence to campaign for change, to lobby the local government or the mayor.”
What is the chance of being taken seriously if you aren’t a professional scientist, though? How do you ensure your data is reliable? In Ali-Webber’s case, much of the technology has been provided by professional researchers. She has worked with the Extreme Citizen Science group at University College London, via a social enterprise called Mapping for Change. “They provide training and tools to make sure that data is accurate and robust,” says Buckley.
There’s also a gadget in development by a company called Superflux, designed to attach to children’s pushchairs. “BuggyAir is a mobile sensor you can strap to the buggy and then upload the data to an app, which maps the levels of pollutants. It’s going through testing - in fact anyone can take part.”
Another featured project is London-based Bento Lab, founded by a biology student and a design student. Their dream was to build a complete molecular biology kit that fits into a box the size of a laptop - and to make it available at a price anyone can afford.
Groups are interested in taking Bento Lab into remote regions to use as a disease diagnostic tool, identifying killer viruses like dengue fever. The kit is small, portable and cheap, so it’s ideal for the field.
Science in the public eye
In the wake of the horsemeat scandal, one UK group has also been looking at meat and fish - seeing what it’s labelled as, and then using Bento Lab to do a genetic analysis of what it actually is.
So is Beyond the Lab about using science for political purposes? Buckley points out that scientific evidence is amassed and used all the time, to support many arguments. Yet he agrees that the exhibition opens a debate about who participates in science, and how we can democratise its outcomes.
“What’s really shifted over the last 15 years is the increase in the availability of the Internet, and the chance to build a dispersed network of people. There are so many cheap sensors and diagnostic devices too,” says Buckley. “With a smartphone in your pocket you are walking around with a scientific instrument that you could put to use.”
However, if an individual makes a great discovery, what’s to stop a bigger player exploiting those findings for profit, or shutting down research that conflicts with its aims? This is where the Responsible Research and Innovation (RRI) initiative comes in. It’s a set of principles the EU is pioneering and advocating, with projects like Beyond the Lab helping people to understand the issues. RRI is about encouraging researchers in universities and industry to harness the power of the crowd, ensuring that science takes place in the public eye and meets the needs of society.
If professionals feel nervous about allowing outsiders into their world, Buckley offers reassurance. “I think from all the research we’ve done, amateur scientists are not working in a vacuum. They are already in dialogue with professional scientists and institutions, often working with their approval or encouragement. All those we’ve met are aware and conscious of risk and potential pitfalls.”
Tim Omer agrees his work is taken seriously by the diabetes community, as well as by professional scientists, although he says it’s often with “excitement, fear, and at times a mix of both”.
Buckley sees enormous benefits in working with the crowd. “You can look at things in an oppositional way, or you can look at them in a complementary way. People with chronic conditions, for example, have huge knowledge and experience that can be used to benefit everyone. It’s finding the best ways to work together to make things better.”
Beyond the Lab is open from 7 July 2016 at the Science Museum and is open seven days a week, 10.00-18.00, free admission