Archive for the ‘Citizen Science’ tag
Turn your beach visit into marine ecology research on worldwide jellyfish populations.
Looking for more summertime citizen science projects? Find them here.
Between 2012 and 2013, power plants in Israel, Sweden, Scotland, Japan, and the U.S. were shut down unexpectedly, all for the same reason: jellyfish. Blooms of jellyfish abundantly swarmed in coastal waters and clogged water intake pipes, forcing plants to halt operations and clear the unwitting slaughter. More recently, headlines have heralded an upswing of jellyfish appearances, such as CNN’s “Jellyfish taking over oceans, experts warn,” and Nature News’ “Attack of the blobs.” Just last week, BBC News reported record numbers of jellyfish spotted on the Welsh coastline this summer. At first glance, these sightings appear to reflect a global increase in jellyfish populations, but scientific studies say that current data is too limited to make conclusions on the ecological effects of these gelatinous zooplankton.
This post, written by Christine Nieves, originally appeared on the Robert Wood Johnson Foundation Pioneering Ideas blog. Check out the citizen science projects mentioned in the post, such as: FoldIt, Sound Around You, and FightMalaria@Home.
I remember the distinct feeling of learning about Foldit. It was a mixture of awe and hope for the potential breakthrough contributions a citizen can make towards science (without needing a PhD!). Foldit is an online puzzle video game about protein folding. In 2011, Foldit users decoded an AIDS protein that had been a mystery to researchers for 15 years. The gamers accomplished it in 3 weeks. When I learned this, it suddenly hit me; if we, society, systematically harness the curiosity of citizens, we could do so much!
Want to learn about data visualization in citizen science? Take part in CitSci.org’s Feature Friday!
What: This feature Friday will focus on data visualization on the CitSci.org site.
Who: Anyone who is interested in data visualization in a citizen science setting. Please join our conversation with your valuable input. Researchers, coordinators, and volunteers are all welcome.
When: August 1, 2014 (1-2p MST)
Coop’s Citizen Sci Scoop: Patients Who Were Research Subjects and the Doctors Who Listened – the Citizen Science of HIV/AIDS Research
Editor’s Note: Flight MH17 was a horrible tragedy, with many lives lost, including HIV/AIDS researchers en route to a conference. In Caren Cooper’s latest Coop’s Citizen Sci Scoop, she explains how citizen science assisted with AIDS research, and how AIDS activists were able to become participatory members of the medical and scientific process. Here, in full, is Caren’s post.
Many prominent people involved in HIV/AIDS research lost their lives when Malaysian plane MH17 was shot down over Eastern Ukraine. HIV/AIDS researchers exemplify how scientists serve the public good. A key to HIV/AIDS research has involved embracing a certain type of citizen science.
The rapid advances in HIV/AIDS treatment in the late 1980s and early 1990s occurred because of major changes in medical research brought about by the lay public. In part, AIDS activists were eager to reform clinical trials in the United States. But equally important, the biomedical research community was (ultimately) receptive to this change.
The term citizen science in this blog is used to describe projects where the public engages in scientific research. It is usually through collecting and sharing observations or by coding data online. Citizen science can also be used more broadly to describe ways that the lay public participates in and influences the practice of science. (Indeed, the term “citizen science” was initially coined by Alan Irwin in 1995 to mean just that).
A colleague recently sent me a 1995 journal article by Steven Epstein. Now a prominent sociologist, his article is a condensed version of Epstein’s dissertation research about the social movement of AIDS activists. (For further reading, see his book).
I summarize Epstein’s research in this post. He examined how AIDS activists became seen as credible agents of the scientific community and developed into important partners to AIDS researchers and government officials in the United States.
In 1981, AIDS was recognized as an epidemic. In 1985, the HIV antibody test became available to the public. People, mostly in their twenties and thirties, were learning that they were infected long before they showed any symptoms. But this was long before any effective treatments were discovered. A positive test result was a like a death prophecy. Some accepted their fate; many others became activists searching for a cure.
In the United States, the group primarily seen as affected by the disease were already seasoned activists in making the public aware of gay identity. The homophile movement of the 1950s was followed by the gay liberation movement of the 1970s. The gay and lesbian community had already “demedicalized” gayness. They had redefined their social status, becoming a legitimate “interest group” in the pursuit of civil rights. They had resources, people of influence, funding, a strong public relations arm, lobby groups, and community-based organizations.
This group understood that the future of their health required a close working relationship with scientists. Anything less would be group suicide. AIDS research involved all types of scientists who had strong credentials, such as immunologists, virologists, molecular biologists, epidemiologists, and physicians. How could the lay public improve their research?
The answer was speed. Initially, AIDS activism focused on the FDA and the desire for more rapid approval of experimental drugs and the ability to obtain unproven treatments from other countries. When none of the existing drugs were working, activists focused on the NIH, seeking more drugs to test. It was in this way that treatment activists influenced not only the design, conduct, and interpretation of clinical trials, but also the speed in which they were carried out. The timeframe for testing the safety and efficacy of AIDS drugs was reduced, counted in months, rather than years.
Treatment delayed was treatment denied. By 1987, more than 46,000 Americans were infected with HIV and over 13,000 had died from AIDS.
To take one example, Mark Harrington, a script writer with no scientific background, epitomizes the involvement of AIDS activists in science. Like other activists, Harrington helped ACT UP to organize demonstrations. In 1988, it was “Seize Control of the FDA.” On May 21, 1990, it was “Storm the NIH.” These protests drew attention, but a more nuanced discussion of scientific practices was needed. Activists did not want to be victims, or be powerless or oppressed. They wanted to help discover treatments, even if that meant trying lots of drugs that did not work. Harrington responded by learning the technical details of AIDS, until he could participate knowledgeably in scientific discussions. By 1992, Mark delivered his first plenary at the Eight International AIDS conference. He began co-authoring peer-reviewed papers, and continued to publish for years (including, for example, a 2006 paper in PLOS Medicine).
How did Harrington go from street demonstrator to scientific collaborator? AIDS activists like Harrington took a four-pronged strategy to gain credibility and authority.
First, influencing drug testing required a working knowledge of pharmaceutical companies and government. To be successful, the activists had to learn to speak the language of the researchers and learn the culture of medical science. Activists learning about biomedical research found it similar to learning a foreign language and entering another country. Immersion was best. This meant attending scientific conferences, critiquing research projects, even being tutored by scientists. They would read a protocol, learn as much as possible about how the drug is known to work, learn about virology, immune systems, statistics, as well become familiar with the regulations just like an informed patient. Harrington prepared a 50-page dictionary of the vocabulary. Soon activists could talk about viral assays, reverse transcription, cytokine regulation, epitope mapping. Once activists spoke the language, scientists were receptive to discussions.
Second, activists presented themselves as informed, knowledgeable representatives – voices of people who were suffering with AIDS/HIV. Researchers wanted to work with activists too because then they could better ensure that enough people would enroll in their treatment trials and comply with protocols. Activists brokered the relationship between researchers and patients.
Third, activists linked arguments about scientific methodological to moral arguments. For example, early trials were of middle-class white men, but affected populations included injection drug users, people with hemophilia, women, minorities, and heterosexuals. Activists conceived of experimental treatments as a social good to which everyone should have equal access. The history of clinical trials in the United States is full of stories of abuse, lack of informed consent, and people unknowingly exposed to risk and harm. Activists shifted discourse to emphasize the right of human subjects to assume the risks of experimental therapies and to be informed partners in scientific methods. They wanted policy that was credible both morally and scientifically.
Fourth, and perhaps most important, activists were taking sides in debates about clinical trials. Before activists took sides, most researchers performed only randomized, controlled, clinical trials with particular methods that did not allow research subjects to have access to potentially helpful treatment.
People who already tried one treatment would be excluded from tests of a new treatment in the name of “clean data.” But not all researchers believed in clean data. The world, after all, is messy and many researchers thought drugs should be tested in real-world situations. Activists favored the pragmatic “messy” practice. They feared the “fastidious” practice of clean data from homogenous groups because it prevented terminally-ill patients from trying new treatments. Activists argued that the only way to obtain clean data in a messy world was to unfairly manipulate and control people. But you could, they and scientist-allies argued, get reliable answers quickly in the real-world if there was a change in clinical trials.
Underlying the four-prong strategy is the basic premise that AIDS clinical trials function simultaneously as research and medical care.
After constant efforts, AIDS activists gained authority, which usually only comes from academic degrees and institutional affiliations. They went from diseased victims to activist-experts. They became citizen scientists.
Today such activists are voting members of NIH committees that oversee drug development.
They are representatives at FDA advisory committee meetings where drugs are considered for approval.
They serve on institutional review boards of hospitals and research centers.
And, like many of the passengers on Malaysian Airlines flight 17, they fly to global conventions on AIDS research.
Live in Los Angeles county? Photograph butterflies and moths, and help scientists study climate change.
Interested in more moth and butterfly citizen science projects? We’ve got you covered!“Once I read a story about a butterfly in the subway, and today, I saw one…” 
In the heat of summer monsoons, butterflies accompany the paddling turtles in the lake outside my window… butterfly? Wait a minute; I remember dragonflies, not butterflies, from childhood. Nightly news reports every evening that our fragile blue marble is undergoing significant changes. Could butterflies and moths help scientists understand how living organisms adapt to climate change?
More than 174,000 species of butterflies and moths, the Lepidoptera, or scaly-winged insects, have been cataloged, making them some of the most successful insects to flutter across our planet. Vital to local ecosystems, butterflies and moths are important food sources and pollinators, only differing in their coloration (bold colors vs. drab monochrome) and diurnal/nocturnal range. Yet, only 236 species of butterfly have been observed in Los Angeles County.The Los Angeles Butterfly Survey, a partnership between the all-volunteer Butterflies and Moths of North America (BAMONA) and the Natural History Museum of Los Angeles County, is working with citizen scientists to count and photographically catalogue the butterflies, and moths, found between the urban skyscrapers of southern California.
Becoming a butterfly, or moth, hunter has never been easier. Citizen scientists simply photograph, noting the date, time, and location, of their winged sighting. The photo and observations are then uploaded to the BAMONA website, where experts identify/verify the species before adding the find to their database. The data is used to develop a visual database and life history page for each species including stunning, user-submitted, photographs and maps reflecting recent sightings.
Kelly Lotts, co-founder of BAMONA, notes, “It is very easy for kids to grab cameras and to take photographs of species found where they live or at their school… Kids really enjoy being able to point to their dot on the map, to their actual photograph.”Since its launch in 2011, the Los Angeles Butterfly Survey has become an invaluable tool encouraging city dwellers to become scientists for the day. Over 628,000 butterfly and moth sightings have been recorded across all of North America; 1320 for southern California. Lotts goes on to explain, “We get a lot of data requests from scientists looking at butterflies as indicators of climate change… in 2011 and 2012, in California, there was a sighting of Hyalophora cecropia each year. This is very unusual as the Cecropia is found in the east of the Rocky Mountains.”
Citizen scientists benefit from their involvement as well. At the Natural History Museum of Los Angeles, they are mapping local species in order to inform planting in the pollinator garden. New projects are sprouting up including the Monarch Larva Monitoring Project. According to Lila Higgins, Manager of Citizen Science for the museum, “Citizen scientist are already getting so much out of their experience. They are thinking like scientists – making predictions about what they are going to find in the coming weeks. Talk about science in action.”
Why not grab a camera and enjoy the summer sun while waiting for a butterfly to flutter by?
References and Resources:
 Image courtesy Tony Maro (BAMONA submission).
 Kathleen Kelly, You’ve Got Mail
 Image courtesy Wendy Caldwell (Museum of Natural History, Los Angeles).
 Data courtesy BAMONA website.
Dr Melinda T. Hough is a freelance science advocate and communicator dedicated to sharing the inspiring stories of life science and helping the general public explore their world. She holds a PhD from the University of Edinburgh for research into how antibiotics kill bacteria, was a policy fellow at the National Academy of Sciences, and is a published photographer. Naturally curious, it is hard to tear Melinda away from science. Not content to stay in one place for very long, she might be found exploring, often behind the lens of her Nikon D80, plotting her next epic adventure, or training for the next half marathon.