Citizen science can empower communities
Early in 2015, a group calling itself the hit the parenting scene in the U.K. It was made up of moms and dads who used cloth nappies 鈥� or diapers 鈥� with their kids, and wanted to know the best ways to keep them clean and safe.
The Nappy Science Gang is part of a growing global movement toward citizens getting involved in science. Over the past few years, there鈥檚 been an explosion of opportunities for ordinary people to collect data for researchers, and sometimes help analyze it. Platforms such as , and are all helping citizens (anyone who鈥檚 part of a community, in this context) connect with scientists and get involved with the process of scientific discovery.
Without doubt, the movement is enabling more people than ever before to become engaged in science and to contribute toward scientific progress. Yet in many of these citizen science projects, researchers remain firmly in the driver鈥檚 seat 鈥� asking the questions, setting the agenda and making sense of the data. They鈥檙e big on engagement, maybe not so much on empowerment 鈥� especially when it comes to issues that directly affect participants鈥� lives.
This is where the Nappy Science Gang is different. It represents an emerging trend where citizens partner with experts to do the science that鈥檚 useful to them and their community, not just someone else.
Partnerships like this can have wide-reaching consequences. One question asked by the Nappy Science Gang, for instance, was: why are biological detergents not advisable for washing cloth diapers?
Despite this being the advice given by organizations like the U.K. National Health Service, the group鈥檚 research findings didn鈥檛 seem to support it. So they asked one of their expert advisers for help.
Unable to explain things, the expert in turn approached the NHS 鈥� which also failed to find the scientific basis for their original recommendation.
And as a result, on the use of biological detergents.
The Nappy Science Gang is a good example of how citizen-led science can empower individuals and communities to make informed decisions and influence policy decisions.
Another example is currently playing out in North America. But in this case, the stakes 鈥� and the consequences 鈥� are far, far higher.
In April 2014, the city of Flint, Michigan switched its water supply to the Flint River in an effort to save money. But from the get-go, .
Residents rapidly started raising concerns over the smell, taste and appearance of the water. Yet despite their worries, they were repeatedly that the water was safe.
Tragically, toward the latter part of 2015, it became clear that the switch to what turned out to be a more corrosive water supply had led to high levels of lead leaching into the water. Flint鈥檚 children were being poisoned by the very water parents had been repeatedly assured was safe to drink.
From the beginning of this public health crisis, Flint residents were by experts and civic leaders. At the time of the water switch, I was working at the University of Michigan in Ann Arbor, and clearly remember the near-daily news coverage of residents' concerns and their dismissal by officials.
Motivated by the stories coming out of Flint, a group of students and researchers at Virginia Tech (VT) 鈥� some 500 miles away from Flint 鈥� decided to take action. They reached out to residents and developed a partnership that would help those affected by the growing crisis find out for themselves what was in their water.
The result was the 鈥� a citizen science project that empowered residents in the city to analyze and make sense of their water quality.
The VT team provided residents with water test kits and worked with them on collecting, analyzing and using the results. The results were shocking.
The top 10 percent of measured lead levels were 10 times higher than those in neighboring Detroit, and nearly twice as high as the U.S. Environmental Protection Agency鈥檚 (EPA) action level 鈥� the highest measured value was over .
Because of these findings and direct evidence of high blood levels in children 鈥� and despite repeated official claims that there wasn鈥檛 a problem 鈥� the state and the federal government are to address the situation. And on January 16, 2016 鈥� 18 months after citizen concerns were first raised 鈥� President Obama signed an and orders for federal aid for Flint.
The Flint water crisis is a story of both disenfranchisement and the ability of citizen-led science to empower communities. It鈥檚 a stark testament to how ordinary people can use science to find a voice, and to impact decisions that directly affect them.
Both the Flint Water Study and the Nappy Science Gang are examples of what researchers at the are calling Extreme Citizen Science.
This 鈥渆xtreme鈥� citizen science, according to ExCiteS, is science that empowers citizens to deal with issues that directly concern them. It鈥檚 an approach that enables communities 鈥� regardless of their location, background, culture or literacy levels 鈥� to take the lead in research that鈥檚 directly relevant to them.
At its core, this form of citizen-led science recognizes and validates the ability of citizens to 鈥渙wn鈥� the scientific method 鈥� to formulate questions and do research that directly benefits them and their communities. And it underlines how science can empower the disempowered and disenfranchised.
But only if the necessary resources and support are available.
First and foremost, this means access to experts who are willing to serve the needs of citizens 鈥� and not just co-opt them for their own ends.
It also needs material resources 鈥� access to instruments, journal articles, and web-based tools.
Although the cost of doing science outside of established institutions is falling, it鈥檚 still expensive 鈥� prohibitively so, for many people. If citizen science is to empower the disempowered, not just the well-off, innovative ways of achieving this are needed.
For instance, instrument loan/sharing programs could help get them into the hands of poor communities. More widespread would enable citizens to read about and make use of current research, instead of it remaining in the realm of the privileged. And increased public and private funding for citizen-led research would help build powerful partnerships between communities and experts.
Perhaps the greatest barrier to citizen-led and citizen-relevant science, though, is intransigent institutionalized attitudes.
I was once at a meeting of senior science advisers where I suggested scientists might benefit from listening to ordinary people. I was told in no uncertain terms that this would be 鈥渁 really bad idea.鈥�
There鈥檚 an attitude that still lingers within the global science community that holds that 鈥渘onscientists鈥� should revere, but not interfere with, science.
It鈥檚 great 鈥� so the belief goes 鈥� for citizens to get excited about science, to respect it and to perhaps occasionally help in collecting data as part of it. But to 鈥渄o鈥� their own science, with experts as their assistants? No.
To be fair, there are many scientists who embrace the idea of citizen-led science. Yet traces of this elitist attitude continue to make it hard for marginalized communities with problems and no answers to find a science-enabled voice.
Both the diaper study and the Flint Water Study demonstrate what can be done when citizens are empowered to be leaders and partners in science. And they are just two of many examples. They demonstrate the potential for citizen science 鈥� or more accurately, citizen-led science 鈥� to empower the disempowered and disenfranchised.
Yet for citizen science to be truly empowering in today鈥檚 world, we still have a long way to go.
鈥� is director of the Risk Innovation Lab at Arizona State University. on . It was cross-published with .
