55 Lessons Learned About Science Communication Around the World During COVID-19
Light-gray countries indicate a place whose local experts contributed to our compilation on science communication insights.
The following insights, contributed by members of the Aspen Global Congress on Scientific Thinking & Action, offer local experts' best practices for communicating about a global health crisis with the public in nuanced and regionally specific ways.
Senegal
Is the messenger as important as the message? Pandemics such as COVID-19 and the flood of online misinformation underlie the critical need to elevate the voices of African science leaders. African communities have talented experts they can rely on to access reliable information based on facts, if only the right platforms are provided to them. Not only do we need to share the right information and understand our target audiences, we must pay close attention to those who deliver our messages, when planning any communication strategies.
Fara Ndiaye, Deputy Executive Director, Speak Up Africa
Brazil
The first lesson from the current pandemic for science communication in Brazil is that there is no such thing as redundancy. It doesn't matter how many times one says or explains something—about the importance of social distancing, or the uselessness of chloroquine—there is always someone you didn't reach the first time, and someone you reached but wasn't paying attention then. You have to repeat it, over and over again. Another lesson is that it actually works. Sometimes the onslaught of misinformation can make one think that the effort is futile. It isn't: if you listen carefully, you can find the results—even if only after a lot of repetition.
Natália Pasternak Taschner, President, Instituto Questão de Ciência (Question of Science Institute)
Carlos Orsi, Editor-in-Chief, Questão de Ciência (Question of Science) Magazine
Colombia
The pandemic has exposed the strengths and weaknesses of journalism, but it is also teaching, in real time, how to do good scientific journalism. In Colombia we have good results with the strengthening of our collaborative networks and working with colleagues from other countries and other media. We listen to science and give it a voice in the media. We are also looking at information from different angles. But we are left with challenges: journalists must be trained in scientific journalism, scientific journalism needs to be across all journalistic areas, and we need to learn to rigorously fact-check.
Ximena Serrano Gil, President, Asociación Colombiana de Periodismo Científico (Colombian Association of Science Journalists)
Ukraine
Ukraine started quarantine on March 25, 2020 when there were only 10 cases of COVID-19. And already on May 22 the quarantine was weakened and economic recovery began. Kyiv Mayor Vitali Klitschko's address "Don't wander the streets" worked well in the capital, the most populated city. We also managed to develop our own PCR tests within two weeks. I managed to provide comments on the origins of the new strain of coronavirus to the leaders of public opinion and it helped to prevent conspiracy theories and to stop the panic. Aspen Institute Kyiv organized a series of online events and activities to inform society about the pandemic, to help with medical supplies, and to assist the needy. In general, the COVID-19 pandemic exposed all the shortcomings and bottlenecks of the country's medical sphere. The positive outcome is that everybody learned about PCR and realized how important good science is for society.
Nataliya Shulga, CEO, Ukrainian Science Club
New Zealand
This pandemic has highlighted how a scientific issue connects every discipline and when those from seemingly different camps work collaboratively and innovatively, a powerful alchemy can result. I think New Zealand's response to COVID-19 has shown what is possible when good science and good communication come together. We have had extraordinary leadership in this country that not only invests in science, but invests equally in the public's understanding of it. NZ citizens were brought into the process of it every single day through effective storytelling across multiple platforms. Walls between science and society melted away, and no one had to question the reasons behind what we were being asked to do to protect ourselves and each other because the science was embedded in a crystal clear story. And at the heart of that story is the message to trust in science like your life depends on it—because it does.
Gianna Savoie, Director of Filmmaking, Center for Science Communication, University of Otago
Portugal
COMCEPT tries to engage with the public in person and via digital social networks. In the week before the lockdown we organized a public meeting, some style of "Skeptics in the Pub," about the new coronavirus. The speaker was the president of a medical association and presented to the public the best data available at the moment regarding SARS-CoV-2 and COVID-19. During the lockdown, we used social media to promote reliable information about the disease, shared official data from the Government, asked the public to participate in online academic studies, and debunked conspiracy theories.
João Lourenço Monteiro, Vice President, COMCEPT: Comunidade Céptica Portuguesa (Portuguese Skeptical Community)
Australia
Australia has … so far … come through the coronavirus pandemic without suffering the appalling figures seen elsewhere: Australia's death rate per million currently stands at 4, compared with 300 deaths per million in the U.S.A.; 542 in the UK; and a horrifying 800+ in Belgium. Australia is not alone in achieving such relatively low figures, but in Australia it does seem to be thanks to a fairly (but not perfect) early intervention to stop infections through border controls and lockdowns, supported by a largely cooperative public. While early communication efforts by governments were marked by contradictions and confusion, one success has been the national broadcaster, the Australian Broadcasting Corporation, in spreading factual information through a range of media platforms. In particular are the activities of Norman Swan, presenter of ABC Radio National's Health Report, who has become a key voice of coronavirus information. His daily CoronaCast podcast quickly became one of the most downloaded science podcasts around the world, and though presentations were not without dire predictions, his softly-spoken manner generally gave science communication a voice that seemed sincere and proved reliable.
Tim Mendham, Executive Officer, Australian Skeptics
Israel
There are two salient features of the corona-related fake news in Israel: they give the reader meaning and hope. I think that if we talk more about the interface between science and moral values, we might be able to fill in the needs currently filled with prophetic, pseudo-medical, and conspiracy messages. When communicating science, a curve is not just a curve; it is also a story about solidarity.
Ayelet Baram-Tsabari, Associate Professor,Faculty of Education in Science and Technology, Technion – Israel Institute of Technology
Nigeria
COVID-19 has exposed the need to diversify the approaches and languages used to communicate science. In Science Communication Hub Nigeria and African Science Literacy Network, our scientists and fellows are using local languages to debunk science misconceptions and disinformation about COVID-19 through written articles, myth busters, and weekly webinars streamed live on Facebook and YouTube. In addition to disseminating good science, this approach has made it easier for us to understand how local communities view science and scientists, which in turn enables us to deliver content appropriate to these communities.
Mahmoud Bukar Maina, Founder, Science Communication Hub Nigeria
Czech Republic
It is not a secret in the world of science communication that, for many, accepting the facts has little to do with facts themselves. This quiet truth has been brought out into the spotlight even more so now during the pandemic. Many of us received the lesson that we must communicate with the human first before we try communicating the science to them.
Claire Klingenberg, President, European Council of Skeptical Organizations (ECSO)
U.S.A. / Mexico
The pandemic has united science communicators more than ever. It has spurred many fruitful collaborations, such as the COVID-19 Virtual Forum organized by the Mexican Network of Science Journalists with all the science communication associations in Latin America and Spain. In Mexico and the U.S., we are all fighting misinformation while keeping up to date with the freshest science, policies, and society's response. This is the time to show why science journalism is important by stepping up to the plate.
Rodrigo Pérez Ortega, Founding Member, Mexican Network of Science Journalists
Switzerland
Switzerland has managed to flatten the curve substantially and avoid a collapse of the public health system. Now that the country is slowly opening up again, the public discourse increasingly revolves around the question of "what was all this fuss about, when nothing happened?!" We have a term for this frustrating phenomenon: Pandemic Paradox. The successful management of outbreaks can lead to a decrease in public trust in communicators based on the perception that they were overreacting. However, we are aware of it and its origins are well studied, which gives us an assortment of tools to combat it.
Angela Bearth, Research Scientist, Consumer Behavior, Department of Health Sciences and Technology, ETH Zürich
Cameroon
The pandemic has recalled the vital role of science communication in times of crisis. Africa in general and Cameroon in particular have been spared for the moment from the catastrophe so feared by the whole world. This stems from the good collaboration among media, decision makers, and researchers who have positively influenced the apprehension of the threats by the general public as well as their behavior, which is a determining factor for the efficiency of the response.
Stéphane Kenmoe, Scientist, Science communicator, and television personality
Canada
Science communication is always challenging but even more so in the COVID-19 era since so much about the disease is unknown. Because of my media presence and the mandate of our Office to "demystify science for the public," I am bombarded by questions from morning to night. Unfortunately, the answers almost always have to be qualified with "ifs," "buts," and "maybes," which is not very satisfying.
I think I can confidently say that self pleasuring will not reduce the chance of contracting COVID-19 as some bloggers claim, and I can also assure people that hanging laundry on a clothesline is safe and advise them that putting the newspaper in the oven to disinfect it is a bad idea. But when questions arise about handling mail or groceries, or the effectiveness of masks, the uncertainties creep in.
Then there is the issue of the numerous conspiracy theories ranging from Bill Gates's supposed plan to decimate the population to the disease being caused by 5G antennae. This puts us in a position of having to prove a negative, which is very difficult to do. My usual approach is to ask proponents questions about the number of conspirators that would have to be involved, their possible motives and the source of the information. Sometimes if you give them the rope they will hang themselves.
Joe Schwarcz, Director, Office for Science and Society, McGill University
India
The clamp downs, the lock downs,
the prayers were all tried
Lamps were lit, plates banged, and
flowers were showered from skies
Millions were spent, sugar pills were
dispensed, grandmas' soups concocted
Herbs were boiled and breathing taught
Alas nothing worked, they all came to
naught
Millions walked, hundreds died.
All nation builders migrating to home
villages
The rulers were deaf, the nation was
blind to one of the longest shut downs
of its kind!
But nothing worked, neither the herbs
nor the sugar pills or the urine of the
mother cow!
1,300 million Indians abandoned to their fate now!
Narendra Nayak, President, Federation of Indian Rationalist Associations
U.K. / China
COVID-19 has brought the public to witness first-hand science-in-the-making in a multi-centred world and allowed the scientific community to participate in real-time sense-making with various publics on risks and responsibilities. To borrow the term from Silvio Funtowicz, COVID-19 has ushered everyone into an era of "post-normal" science communication, in which the contents being communicated are contingent, objectives conflictual, outreach global, consequences personal, and (re)actions urgent. This further highlights the need to co-develop new approaches of transnational scientific dialogue in and with China, where public engagement is still at a nascent stage.
Joy Yueyue Zhang, Senior Lecturer in Sociology, School of Social Policy, Sociology, and Social Research, University of Kent
U.S.A.
I'm inspired by the work of Avi Schiffmann, a 17-year-old high school student in Seattle, Washington, who took it upon himself to create a well-designed and up-to-do-date website for tracking COVID-19 infections and deaths from around the world. Remember when the outbreak first happened and no one could get reliable information in one place? This kid—who had been coding since he was a child—created a massive data-scraping program that allowed a centralized location for this crucial info. And it's gotten millions of views. Now that's science communication!
Lee McIntyre, Research Fellow, Center for Philosophy and History of Science, Boston University
Syria
In Syria, the COVID-19 situation is messy and unclear and lacks transparency. From one side, official numbers show only 109 cases and four deaths since the outbreak; on the other side, these numbers are widely criticized by experts as well as by the public because of low testing and lack of official communication.
The nine-year-long war has hugely destroyed the medical infrastructure in Syria and pushed the majority of medical staff to leave the country. Despite these facts, the country went into only a partial lockdown and tried to minimize interactions among its population with shy measures.
The big absence in these measures was indeed "communication." None or only a few official institutions tried to keep the population updated about the evolution of the disease inside the country. This factor pushed many civil society organizations to take over, covering topics such as self-protection, molecular biology, and pharmaceutical updates. Moreover these initiatives, mainly via Facebook, fought against misleading information such as conspiracy theories and unethical drug use. In the near future, international organizations should learn from the Syrian example and pay more attention to the impact of these volunteer-based organizations that could replace official institutions for science communication during wartime.
Mouhannad Malek, Founder and Chairman, Syrian Researchers
Spain
From the skeptical movement, we noticed that at first almost everybody was very cautious, and few dared to screw it up with loose nonsense. But right away, some started placing the blame on their favorite enemy: Trump on China, China on Trump, or electromagnetic or 5G sensitivity—allied to the anti-vaccination, flat-earth, and Germanic New Medicine leagues. And then there are the crazy remedies pulled out of a hat.
Juan A. Rodríguez, Secretary, ARP–Sociedad para el Avance del Pensamiento Crítico (Society for the Advancement of Critical Thinking); Editor, El Escéptico (The Skeptic) magazine
Argentina / Brazil
Science communication and journalism have been reinvented in South America. More people are giving their time to contribute to science communication and are also actively engaged in teaching society how to be fact-checkers. Science popularization was reborn in small movements that spread checked news that "goes viral" through WhatsApp messages where, until then, Fake News had a clear ground. Low-cost podcasts boomed, shared sometimes even in the old way, through car loudspeakers in the street. Journalists, science communicators, and researchers became more active in professional networks. They also abandoned the practice of competing against each other, creating new ways to collaborate. Now, they share hard-to-access data through virtual meetings, pre-prints, or private communication, offering experts' contacts and valuable advice. This is the new normal.
Roxana Tabakman, Health Writer and Science Journalist, Red Argentina de Periodismo Científico (RADPC) (Argentinian Network of Science Journalism); Rede Brasileira de Jornalistas e Comunicadores de Ciência (RedeComCiência) (Brazilian Network of Science Journalists and Communicators)
Japan
In Japan, the lack of outreach from scientists and science communicators during the Fukushima nuclear power plant accident following the Great East Japan Earthquake in 2011 led to a growing distrust of science professionals. In this year's COVID-19 pandemic, many scientists are disseminating information online, and science communicators at research institutions are actively providing learning tools for children who are on standby at home. While politicians have yet to learn the importance of science communication, the public is learning how to seek out the information they need.
Masataka Watanabe, President, Japanese Association for Science Communication
Jordan
In these unprecedented times, building the case for science and research is of utmost priority. Therefore, at Phi Science Institute in Jordan, we aim to handle this responsibility very seriously on the regional and global levels by providing full coverage of the latest trusted scientific news in Arabic for the Arab world; turning our Research and Innovation Summit 2020 fully virtual to connect youth and experts for science from all across the region and enable them to work on joint research projects at this hard but unique time; and working with our artificial intelligence lab on healthcare A.I. products related to COVID-19.
Safa Khalaf, Community Outreach Officer, Phi Science Institute
U.S.A.
Initial response to the outbreak in the U.S. was striking for the high degree of support for and compliance with restrictions on public activity. Scientists were centerstage in their role advising government leaders. But U.S. opinion has been shifting. There are now growing partisan divisions over the risk COVID-19 poses to public health as well as over social distancing measures aimed at slowing the spread of the disease. And, unlike years past, a partisan imprint now extends to public confidence in medical scientists to act in the public interest.
Cary Funk, Director, Science and Society Research, Pew Research Center
Romania
Governments all over the world have realized the importance of good communication with the public. And they have also realized the impact that false news and misinformation can have on their efforts. I work in promoting vaccination, and until now, antivaccine ideas were considered fringe and limited. The pandemic has shown that anyone can start to become a source of misinformation, and we need to combat misinformation quickly and efficiently. This lesson, hopefully, will not be forgotten.
Ovidiu Covaciu, Administrator, Vaccinuri si Vaccinare (Vaccines and Vaccinations); Founder, Coaliția România Sănătoasă (Romania Healthy Coalition); Producer, Sceptici în România (Skeptics in Romania)
Russia
Just a year ago, we launched a specialty in communication in medicine and biotechnology in our SciComm M.Sc. program. It's been a long time coming! Like never before, we are facing the fact that science communication matters, and the lack of information only increases fears and frustrations.
Daria Denisova, Director, Science Communication and Outreach Office, ITMO University
South Africa
Novel ways of sharing the science of COVID-19 with children: In South Africa (and many other countries) scientists have partnered with authors and illustrators to create a range of storybooks, comics, and infographics (in many indigenous languages) to help children understand the pandemic.
The pandemic is also an infodemic: As much as there is a need (and demand) for scientific expertise, misinformation may also flourish when people are scared and uncertain. Combating misinformation is a complex task. It is important to understand the reasons why rumours and false claims spread, and to be thoughtful and respectful when trying to correct them. Here is some advice.
Marina Joubert, Senior Researcher, Centre for Research on Evaluation, Science and Technology (CREST), Stellenbosch University
U.K.
As a researcher of so-called alternative medicine (SCAM), I should have expected it—but when it did arrive, it came as a surprise nonetheless. I am talking about the number of snake-oil salesmen putting their ugly heads above the parapet. After the pandemic had been declared, it took just days for the promotion of corona quackery to start: acupuncture, chiropractic, herbal tinctures, homeopathic remedies, colloidal silver, essential oils, dietary supplements, and many more. The entire panopticum of SCAM was on display. This was when I decided to relentlessly name and shame the villains on my blog (edzardernst.com). Today, I must have posted over 40 articles about the "corona snake-oil brigade."
The second surprise was positive, I am glad to say. The amount of support I received was unprecedented. Hundreds of comments were posted by people who agreed that now it was more important than ever to disclose this quackery, point out what harm it does, and prevent the public from falling for it (at one stage, my humble blog was even quoted by U.S.A. Today). Many friends and colleagues joined in and wrote about SCAM merchants attempting to make a fast buck by misleading the public. But the public was far less gullible than the charlatans had hoped. My impression is that the snake-oil craze even provided a significant boost for critical thinking. The pandemic is doing untold, tragic damage, but it has also helps to explain to consumers how crucially important real science is and how devastatingly dangerous pseudoscience can be.
Edzard Ernst, Emeritus Professor, University of Exeter
"How can we sustain this appetite for science? Highlight the WHY more than the HOW and WHAT."
Pakistan
Pakistan is actively combating the COVID-19 pandemic by effective lockdowns. People are well aware of mask and sanitizer usage and are maintaining social distancing. Treatment of those affected is being provided by government hospitals.
Qaiser Majeed Malik, Chairman, Pakistan Science Foundation
Turkey
Despite strong faith in fatalism in Turkish society, trust and confidence in sciences have unexpectedly increased since the outbreak of COVID-19. Discussion programs on TV give their prime times to scientists more than governmental authorities. The Ministry of Health got more credit than any other political actors because of its daily updates on prevention arrangements. However, social media is more useful to share information about people's corona experiences in their living environments. Personal impressions and experiences are widely circulated during the outbreak, including health conditions and daily life routines under the "stay at home" conditions. Scientific content about COVID-19 is also heavily distributed, and governmental practices are called into question by social media users frequently. Individuals become more "science citizens" both by demanding scientific information from diverse and trustworthy sources and also by producing their own content.
Çiler Dursun, Professor, Faculty of Communication, Ankara University, Scientific Coordinator, Genovate
Malaysia
A lesson I learned during the pandemic as a science communicator: it takes a crisis for the public to heed science and see it as a solution provider. Followers on my Facebook page increased by more than 2,000; subscription to my newspaper, The Petri Dish, increased among the public; and more media interviews. How can we sustain this appetite for science? Highlight the WHY more than the HOW and WHAT.
Mahaletchumy Arujanan, Executive Director, Malaysian Biotechnology Information Centre (MABIC)
Germany
The brief guide on Proper Criticism by psychology professor Ray Hyman has been crucial for effective science communication, where he explains essential points, such as not going beyond your level of competence and using the principle of charity. Beyond presenting the facts and the science, which are often later forgotten by the audience, people remember the messenger. We have learned that coming across as compassionate, credible and trustworthy gives the message a far more significant and lasting impact.
Amardeo Sarma, Chair, Gesellschaft zur wissenschaftlichen Untersuchung von Parawissenschaften (Society for the Scientific Investigation of Parasciences)
Netherlands
In the early phase of the pandemic in the Netherlands, the government opted for a moderately strict lockdown and suggested that in this way the virus that was still present would lead to herd immunity. There was massive outrage because the public understood that civilians were being sacrificed for the creation of this herd immunity. When the government subsequently explained that the creation of herd immunity was not the goal of its policy but a welcome side effect, the unrest subsided.
Cees Renckens, Chair, Vereniging tegen de Kwaksalverij (Dutch Society Against Quackery)
Rwanda
At the University of Global Health Equity (UGHE), we have worked to further our educational mission during this unprecedented challenge of COVID-19, a pandemic that reminds us of the critical importance of our mission. With our campus located in the rural north of Rwanda, it was our priority to not only continue to provide quality education—which has transitioned to fully virtual learning—but also to take extensive precautions to protect our students, staff, faculty, and the surrounding community from the virus. Given the toll of this virus and the drastic change in social norms it has created, we are conducting not only weekly physical screenings but also mental health screenings. We are grateful to report that all from our UGHE community have remained in strong health. We are grateful to keep contributing to the fight for global health equity during a time such as this.
Agnes Binagwaho, Vice Chancellor, University of Global Health Equity; former Minister of Health
U.S.A.
The pandemic has revealed that now more than ever, science communication cannot prevail until nations and states dismantle the underlying structural injustices that erode trust in science. For instance, the exploitation of racial minorities' justified distrust of the medical establishment by anti-vaccine groups has become a matter of growing concern—from the 2017 Minnesota measles outbreak after activists convinced Somali-American immigrants that vaccines cause autism to the growing present-day opposition to a COVID-19 vaccine. Still, there is hope if only those who disseminate science-based information understand that the anti-vaccine movement, and similar movements that sit at the crossroads of science and society, have never been fundamentally about evidence. It's about whom to trust.
Kavin Senapathy, Science, health, and parenting writer; Member, American Society of Journalists and Authors; Contributing Editor, SciMoms.com
Indonesia
Although the clerics all agreed that public prayer should be banned to slow the spread of the disease, many Indonesian Muslims clogged the mosque during Ramadan and Eid, completely ignoring the health and religious authorities. Some Indonesian Muslims even strongly believe that somehow the Jewish and the Chinese are the masterminds of the pandemic—a bizarre claim that Muhammadiyah, one of the largest Muslim organizations, is trying hard to debunk. Conspiracy-theory believers are still not completely convinced by counter-arguments coming from religious authorities.
Rizqy Amelia Zein, Assistant Professor, Department of Personality and Social Psychology, Universitas Airlangga
U.S.A.
I practice Stoic philosophy and have been wondering what the Stoics might have to say about how to react to a pandemic. It struck me that our current situation is somewhat analogous to something many in the ancient world had to experience: exile. When someone is in exile, their life is very different, of lower quality, and far more constrained, than what they are used to. Just like during self-isolation or lockdown in a pandemic.
So what did the Stoics do when in exile? They taught philosophy to others, like Musonius Rufus, a famous first-century teacher. And they wrote letters of consolation to their loved ones, as Seneca, also in the first century, did to his mother Helvia.
In that letter, Seneca says that Fortune comes and goes, but what remains constant, and independent of Fortune, is our character, our determination to always be the best human beings we can be. Indeed, it is in times of difficulties and setbacks that we have an opportunity to shine. As he puts it, everyone is a good pilot when the sea is calm. It's only in the midst of a storm that we see who is truly skilled. So let's think of the current storm as an opportunity to improve our proficiency at navigating life.
Massimo Pigliucci, Professor of Philosophy, City College and the Graduate Center, City University of New York
Morocco
Our communication efforts have included webinars on the environment, climate change, and inter-linkages with the pandemic, for example effects of coronavirus on biodiversity, how COVID-19 has benefitted climate, and the green economic recovery from COVID-19. Our members have also written opinion articles published in journals and media in more than ten Arab countries. These activities have attracted the attention of communities, raised awareness as the scientific material was communicated in the Arabic language, and significantly unleashed the potential of our members.
Hajar Khamlichi, President and Co-Founder, Mediterranean Youth Climate Network; Board Member, Moroccan Alliance for Climate and Sustainable Development
Iran
Iran was one of the first countries to be involved in the crisis. Widespread international sanctions have restricted the capability to control the virus. In response to the pandemic, scientific institutions, non-governmental organizations, and government agencies have facilitated the transition from this crisis by:
Akram Ghadimi, Associate Professor, Department of Popularization of Science, National Research Institute for Science Policy
Philippines
Here in the Philippines, government agencies regularly post pandemic-related visual aids through social media in order to prove a point (e.g., "The curve is flattening," "We have more or fewer cases"), except the visual aids are unintuitive, if not altogether cherry-picked: Trend lines are traced haphazardly, bar charts are not drawn to scale, and government spokespersons almost literally tell people what to believe. Instead of just mocking these visual aids, younger data scientists and statisticians have taken to social media to talk about how to interpret data and why some visual aids are badly made. These scientists use these social media posts as a starting point to help people think critically rather than accept knowledge wholesale, which fits well with how the practice of science is about questioning, critical thinking, and healthy skepticism.
Inez Ponce de Leon, Assistant Professor, Department of Communication, Ateneo de Manila University
U.S.A. / Colombia
Seven years ago, I wrote a book in Spanish called Un enemigo invisible / An Invisible Enemy. This science and adventure novel for young adults is read in several schools throughout Colombia. The plot deals with a deadly virus that gets into Miami via a howler monkey brought from Guyana in a shipment of wild monkeys for lab research. The monkey is a reservoir (whose original host is a bat) of the (fictitious) virus Canzanboria, which infects one of the young main characters. The book thus becomes a race to find out what this virus is, where it comes from, how to get a vaccine, and how to stop it—like what is happening now.
The exciting part is that, because of the pandemic, several schools are hosting videoconferences where I can talk to kids about the book and my behind-the-scenes work with real-life virus hunters—research I did in order to write the novel. These kids are hugely interested and love my explanations about the evolution of viruses, the roles they play in our life, and the fact that were it not for a virus, none of us mammals would exist.
This pandemic has opened a window for me to take the scientific process to young minds in often inaccessible places in Colombia, as well as in China (the book was translated into Mandarin). I think reaching young people is the way to achieve a well-educated and interested society that will eventually grow up to support science in a meaningful way.
Ángela Posada-Swafford, Science, environment, and exploration journalist, lecturer, moderator, and book author; Board Member, Colombian Association of Science Journalists
Ghana
Shortly after the first case was reported, various professional science societies and associations came together to form a COVID response team. The purpose was simple: to coordinate availability of scientists for media engagements. It worked well and continues to do so, making sure that people remain informed based on accurate science. It has been a lesson on coming together and communicating science collaboratively.
Thomas Tagoe, Lecturer, Physiology and Pharmacology, University of Ghana; Co-Founder, GhScientific
Nepal
In order to control the rate of proliferation of COVID-19, social distancing has been a globally accepted effective method. In order to maintain such distancing and yet continue our business as usual, information and communication technology available today is very much useful. Also, mobile technology has been easily accessible even to people living in poverty in Nepal. Therefore, we can take the widespread use of internet platforms such as Skype, Facebook, Zoom, MS Teams, Voov, WhatsApp, Kakao, Viber, WeChat, etc. for any kind of communication including for science teaching, seminars, conferences, meetings, and discussions.
Sunil Babu Shrestha, Vice-Chancellor, Nepal Academy of Science and Technology (NAST)
"During this pandemic, perhaps most confusing of all has been the unexpected ideological struggle on the fundamentals of medicine."
Sudan
When it comes to disseminating scientific information, social media can do more harm than good in a time of crisis, due to the spread of inaccurate scientific information. In Sudan, a country that is fighting the spread of COVID-19 with little to almost no resources, WhatsApp, as usual, became the main source of news about the virus for the majority of internet users. Sudanese people's phones are flooded with misinformation, including unverified home remedies (the most viral one was drinking red tea before sunrise), fake research findings that the virus cannot survive the country's climate, and conspiracy theories claiming that the virus is a lie made up by the government to close down mosques and stop people from practicing their religion freely.
All this misinformation has led to people not following recommended policies, such as non-essential travel and social distancing. In fact, it has made some people go as far as protesting in huge numbers against the government's decision to close down the borders. In areas where access to smartphones is limited, the few people who do have smartphones end up being the main source of information for the rest.
The low level of tech literacy in many developing countries, especially among elderly communities, makes people less likely to verify sources. With the continuous increase of COVID-19 cases, misinformation will pose an even more dangerous threat for many countries. Some, like Qatar and Saudi Arabia, have criminalized its spread, but implementing such strict policies isn't always possible. This is why I believe youth- and community-led initiatives in countries like Sudan can take a leading role in raising awareness about the dangers of misinformation. People here have little trust in government but are welcoming of youth work.
Lina Yassin, Programme Manager, Climate Tracker, MENA (Middle East and North Africa)
Guatemala / U.S.A.
At the Cornell Alliance for Science, we are currently highlighting how science is being used to fight COVID-19 and dispelling myths through our online platform. In Guatemala, there have been different spaces created for "science innovation" to address the challenges this pandemic brings with communication strategies that include hashtags such as #nuestrascienciarespone (our science has answers) and #cienciaGTenaccion [GT (Guatemala) science in action]. However, there is also a lot of misinformation spread through the many social media platforms used in the country. We believe we can amplify projects that bring attention to how science is pivotal in a crisis and, at the same time, dispel misinformation by circulating fact-checked pieces in Spanish for our Central American audiences.
Pablo Ivan Orozco, Policy Affairs Associate, Cornell Alliance for Science
France
During this pandemic, perhaps most confusing of all has been the unexpected ideological struggle on the fundamentals of medicine. While evidence-based medicine was demonstrating its power, a discourse combining postmodernism and medieval thinking was developing "against the method," celebrating "common sense" medicine as opposed to medicine presented as big data and big pharma.
France found itself, with its "Marseille Protocol" at the center of this tornado whose effects were felt as far as the U.S.A.–Brazil axis. At the heart of the turmoil, the French Association for Scientific Information has endeavoured to communicate daily on its public website and its internal forum the reliable sources of information enabling everyone to untangle scientific facts from unfounded rumours, to understand where the established knowledge is and where the uncertainties lie, and to remind people that medicine is not a game of poker.
Michel Naud, Director and Former President, Association Française pour l'Information Scientifique (French Association for Scientific Information)
Serbia
During the COVID-19 pandemic, the Center for the Promotion of Science was active in raising citizens' awareness of the challenges they faced. Very early on, at the end of March, the Serbian translation of the extensive database was published on the Center's portal, enabling citizens to find out what is really behind the often confusing statistics that the media conveyed to the public in a clumsy and sometimes distorted manner. In early June, a new issue of the Center's popular science magazine Elementi was released. In a special segment containing six articles accompanied by appropriate visual storytelling, eminent physicians, philosophers, data scientists, science journalists, and graphic designers addressed some important topics related to the pandemic, such as the evolution of SARS-CoV-2, data modeling, mental health of physicians and citizens, and the moral challenges with which decision-makers were faced.
Ivan Umelji, Head of the Department for Publishing and Media Production, Centar za Promociju Nauke (Center for the Promotion of Science)
Marko Krstić, Acting Director, Centar za Promociju Nauke (Center for the Promotion of Science)
U.S.A. / U.K.
At Annual Reviews, we removed access control to all of our content—everything that we have published in the past 88 years—on March 13, 2020 in response to the COVID-19 pandemic. Compared to April 2019, usage of the content in April 2020 increased more than threefold (to 3.1 million downloads worldwide). It was not just our virology and public-health related content that was read more—every field from astronomy to vision science saw a substantial uptick. Removing barriers to access reveals the breadth interest in science for the public good: in the U.S., 28 different city governments, 18 state governments, the U.S. Department of Justice, the U.S. Senate, and the U.S. House of Representatives all recorded usage, as did parliaments in scores of other countries.
Strikingly, access from less wealthy nations rose dramatically; for example, Morocco by 1,403 percent and Ecuador by 1,033 percent. This usage re-emphasizes the value of democratizing access to science across all disciplines (not just COVID-19) and parts of the world.
While the great majority appreciate their personal and public duty to reduce the chance of infection, in the face of weeks of isolation and economic hardship, many people experience angst, anger, and disbelief. Using science to help people understand the dissonances that they were experiencing, and the necessity of their sacrifice, we developed a free service called Pandemic Life as a way to relate the body of social science research to the COVID-19 pandemic. Several times a week, articles that offer insights into such matters as the benefits of social norms, how to guide children's development, dealing with isolation, and the nature of happiness are covered on social media and in a short news story, and the relevant review article is made available for a deeper dive.
This evolved into a series of online conversations called Pandemic Live, during which some of the world's foremost researchers discuss and answer questions on aspects of the pandemic. Directly connecting the public with researchers in ways that go beyond sound bites and political posturing provides a powerful way to communicate reliable science insights into health, social, and economic issues in an age of misinformation.
Richard Gallagher, President & Editor-in-Chief, Annual Reviews, Publisher, Knowable Magazine
Russia
The experience of the South Korean church spreading coronavirus has not taught us—in Russia—anything. There have been large masses of people standing in line in the Kazan Cathedral to kiss the remains of a dead saint. A number of Russian Orthodox priests have commented that you cannot catch a virus in church. The head of church public communications has stated that people should avoid massive gatherings—but religious gatherings are an exception. In the Vatican, Pope Francis was a welcome contrast, giving Easter mass behind closed doors and praying in an empty St. Peter's Square, showing by example the distancing and isolation to which we must adhere in order to save lives. Unfortunately, the Russian Orthodox church does not have such concerns for the people.
Alexander Panchin, Senior Researcher, Institute for Information Transmission Problems (Kharkevich Institute); Member, Commission on Pseudoscience and Research Fraud, Russian Academy of Sciences
U.S.A.
Vaccination has fallen dramatically in the U.S. since the World Health Organization declared a pandemic. One proposal is to use gain-framed messages. This idea builds on insights from prospect theory, which was developed by Nobel laureate Daniel Kahneman. The theory suggests that prevention and treatment behaviors are motivated better by messages with a gain than a loss frame. As applied to our current crisis, the idea is to focus on the benefits of vaccination and on doctors' offices as being safe places. Many of us know more about what our grocery store is doing to keep us safe than what our doctor is doing. Proactively addressing this can help get vaccination back on track.
Noel Brewer, Professor, Department of Health Behavior, Gillings School of Global Public Health, University of North Carolina, Chapel Hill
Ethiopia
In Ethiopia, there are difficulties with governments, stakeholders, and the biomedical community regarding how media should further COVID-19 education and prevention. On March 27, 2020, the Ethiopian Ministry of Health and Ministry of Technology Innovation announced that Ethiopia made significant progress toward development of a cure for the virus: "In collaboration with Ethiopian traditional doctors and modern science research and clinical doctors, we are exploiting our indigenous and traditional knowledge and shaping it into modern science procedures to prepare a cure for COVID-19. The medicine has potential to prevent the virus, is non-poisonous, and is promising."
Following this announcement, many maverick and dissident scientists opposed the statement and said it was premature to make an announcement before a clinical trial was started and that it distracts people's attitudes from vigilance and alertness against the pandemic and politicizes the situation. The majority of Ethiopian people agree: a poll conducted through the messaging platform Telegram found that 71% of people said it was incorrect to make such an announcement before a clinical trial.
Tenaw Terefe, Assistant Professor, Faculty of Journalism and Communication, Addis Ababa University
Italy
As fake news and conspiracy theories about the coronavirus piled up every single day during lockdown, I found myself, as many other science popularizers here in Italy did, with an urge to share—with those following us on social media—analysis, critical thinking skills, and tools to overcome the craze and better understand what was happening.
Day after day, I noticed a closer bond developing with more and more people. They were not only asking the "expert" for information or insights in clearing up some new absurd claim, but they were also looking for some kind and reassuring words from someone they now perceived as a calm and rational friend, someone who could take even the wildest fears back down to earth.
Eventually, as things started to get a little easier and those who could returned to their jobs, crazier claims lost their grip, but the bond of trust between us, pop science talkers, and our audience, not only is still there, but has grown stronger. And it looks like a lot of good and promising things can come out of this.
Massimo Polidoro, Executive Director, Comitato Italiano per il Controllo delle Affermazioni sul paranormale (Italian Committee for the Investigation of Claims on the Paranormal)
Saudi Arabia
The infodemic we're currently seeing alerted me to a crucial point: the correct, reliable, and verified scientific information and evidence is widely available to all those who seek it.
In our digital age, the root cause of ignorance cannot be limited to only knowledge scarcity. A century ago, illiteracy was prevalent in the majority of the global population, and knowledge was only available to a small group of society. All of that has changed, but ignorance still prevails. The root causes must be deeper and broader.
I reckon that this particular ignorance is rooted in the wrong understanding of the scientific methodology process (making an observation, formalizing a hypothesis, experimenting, gathering data, analyzing it, and building a theory). The overwhelming majority of conspiracy theorists' arguments are based on a misconception of one of these basic principles, whether by confusing hypothesis for a theory, or lack of familiarity with methods of constructing a solid experiment, or ways of examining data and evidence, or erroneous analysis of experiments' results outside their scientific context.
Assuming the validity of this observation, the answer to all the ongoing "scientific" controversies won't be by discussing each issue separately, but by referring back to the basics of the scientific methodology, and determining the cognitive origins of this collective fault and reforming it.
Unfortunately, schools do not pay as much attention to the methodology as it deserves, but consider it as another lesson that must be finished to complete the curriculum. This has contributed to the emergence of many strange beliefs in our society without the slightest evidence or collective scrutiny. It is our role as science communicators to bring back the central role of the scientific methodology and reeducate the public about its importance and applications in our daily lives.
Faris Bukhamsin, CEO, Scientific Saudi
U.S.A. / India
Calling out scientific misinformation explicitly is critical for effective science communication. This can be an arduous task since misinformation can be generated rapidly (and at low cost!) through internet platforms. A group of scientists from top research institutes in India (the Tata Institute for Fundamental Research, Mumbai and the Indian Institute of Science, Bangalore) have set up a website with "Hoax Busters" that contains simple infographics explicitly calling out misinformation circulating in social media. This is a critical tool for science communication in a country like India where scientific literacy remains low but technology access has increased significantly (over 500 million smartphone users), leading to an explosion in the circulation of misinformation.
Abhilash Mishra, Director, Kevin Xu Initiative on Science, Technology, and Global Development, University of Chicago
Kenya
The Kenyan Government has been consistent in providing status updates with three key messages, while keeping communication short and simple:
1. Wash hands regularly with soap and sanitize often,
2. Social distancing, and
3. Wear face masks.
One other lesson is use of spokespersons trusted by communities such as faith-based leaders and local administration (not as widely, but at least this is a positive).
Margaret Karembu, Director, International Service for the Acquisition of Agri-biotech Applications (ISAAA) AfriCenter
Chad
This pandemic has shown us that we have an intimate relationship with nature and that there is an urgent need to enhance biodiversity protection. Biodiversity is a protection against the development of pandemics, and nature is our pharmacy and provides the molecules needed for both modern and traditional knowledge. Indigenous peoples have known this for centuries, living in harmony with nature, and advocating for a paradigm shift in our relationship to the environment. My hope is that this crisis will be a wake-up call for all of us. COVID-19 has demonstrated that politicians and business leaders are lost without science, and that listening to scientists can save lives.
Hindou Oumarou Ibrahim, Coordinator, Association des Femmes Peules Autochtones du Tchad (AFPAT) (Association of Peul Women and Autochthonous Peoples of Chad)
[Editor's Note: This article was originally published on June 8th, 2020 as part of a standalone magazine called GOOD10: The Pandemic Issue. Produced as a partnership among LeapsMag, The Aspen Institute, and GOOD, the magazine is available for free online.]
Regenerative medicine has come a long way, baby
After a cloned baby sheep, what started as one of the most controversial areas in medicine is now promising to transform it.
The field of regenerative medicine had a shaky start. In 2002, when news spread about the first cloned animal, Dolly the sheep, a raucous debate ensued. Scary headlines and organized opposition groups put pressure on government leaders, who responded by tightening restrictions on this type of research.
Fast forward to today, and regenerative medicine, which focuses on making unhealthy tissues and organs healthy again, is rewriting the code to healing many disorders, though it’s still young enough to be considered nascent. What started as one of the most controversial areas in medicine is now promising to transform it.
Progress in the lab has addressed previous concerns. Back in the early 2000s, some of the most fervent controversy centered around somatic cell nuclear transfer (SCNT), the process used by scientists to produce Dolly. There was fear that this technique could be used in humans, with possibly adverse effects, considering the many medical problems of the animals who had been cloned.
But today, scientists have discovered better approaches with fewer risks. Pioneers in the field are embracing new possibilities for cellular reprogramming, 3D organ printing, AI collaboration, and even growing organs in space. It could bring a new era of personalized medicine for longer, healthier lives - while potentially sparking new controversies.
Engineering tissues from amniotic fluids
Work in regenerative medicine seeks to reverse damage to organs and tissues by culling, modifying and replacing cells in the human body. Scientists in this field reach deep into the mechanisms of diseases and the breakdowns of cells, the little workhorses that perform all life-giving processes. If cells can’t do their jobs, they take whole organs and systems down with them. Regenerative medicine seeks to harness the power of healthy cells derived from stem cells to do the work that can literally restore patients to a state of health—by giving them healthy, functioning tissues and organs.
Modern-day regenerative medicine takes its origin from the 1998 isolation of human embryonic stem cells, first achieved by John Gearhart at Johns Hopkins University. Gearhart isolated the pluripotent cells that can differentiate into virtually every kind of cell in the human body. There was a raging controversy about the use of these cells in research because at that time they came exclusively from early-stage embryos or fetal tissue.
Back then, the highly controversial SCNT cells were the only way to produce genetically matched stem cells to treat patients. Since then, the picture has changed radically because other sources of highly versatile stem cells have been developed. Today, scientists can derive stem cells from amniotic fluid or reprogram patients’ skin cells back to an immature state, so they can differentiate into whatever types of cells the patient needs.
In the context of medical history, the field of regenerative medicine is progressing at a dizzying speed. But for those living with aggressive or chronic illnesses, it can seem that the wheels of medical progress grind slowly.
The ethical debate has been dialed back and, in the last few decades, the field has produced important innovations, spurring the development of whole new FDA processes and categories, says Anthony Atala, a bioengineer and director of the Wake Forest Institute for Regenerative Medicine. Atala and a large team of researchers have pioneered many of the first applications of 3D printed tissues and organs using cells developed from patients or those obtained from amniotic fluid or placentas.
His lab, considered to be the largest devoted to translational regenerative medicine, is currently working with 40 different engineered human tissues. Sixteen of them have been transplanted into patients. That includes skin, bladders, urethras, muscles, kidneys and vaginal organs, to name just a few.
These achievements are made possible by converging disciplines and technologies, such as cell therapies, bioengineering, gene editing, nanotechnology and 3D printing, to create living tissues and organs for human transplants. Atala is currently overseeing clinical trials to test the safety of tissues and organs engineered in the Wake Forest lab, a significant step toward FDA approval.
In the context of medical history, the field of regenerative medicine is progressing at a dizzying speed. But for those living with aggressive or chronic illnesses, it can seem that the wheels of medical progress grind slowly.
“It’s never fast enough,” Atala says. “We want to get new treatments into the clinic faster, but the reality is that you have to dot all your i’s and cross all your t’s—and rightly so, for the sake of patient safety. People want predictions, but you can never predict how much work it will take to go from conceptualization to utilization.”
As a surgeon, he also treats patients and is able to follow transplant recipients. “At the end of the day, the goal is to get these technologies into patients, and working with the patients is a very rewarding experience,” he says. Will the 3D printed organs ever outrun the shortage of donated organs? “That’s the hope,” Atala says, “but this technology won’t eliminate the need for them in our lifetime.”
New methods are out of this world
Jeanne Loring, another pioneer in the field and director of the Center for Regenerative Medicine at Scripps Research Institute in San Diego, says that investment in regenerative medicine is not only paying off, but is leading to truly personalized medicine, one of the holy grails of modern science.
This is because a patient’s own skin cells can be reprogrammed to become replacements for various malfunctioning cells causing incurable diseases, such as diabetes, heart disease, macular degeneration and Parkinson’s. If the cells are obtained from a source other than the patient, they can be rejected by the immune system. This means that patients need lifelong immunosuppression, which isn’t ideal. “With Covid,” says Loring, “I became acutely aware of the dangers of immunosuppression.” Using the patient’s own cells eliminates that problem.
Microgravity conditions make it easier for the cells to form three-dimensional structures, which could more easily lead to the growing of whole organs. In fact, Loring's own cells have been sent to the ISS for study.
Loring has a special interest in neurons, or brain cells that can be developed by manipulating cells found in the skin. She is looking to eventually treat Parkinson’s disease using them. The manipulated cells produce dopamine, the critical hormone or neurotransmitter lacking in the brains of patients. A company she founded plans to start a Phase I clinical trial using cell therapies for Parkinson’s soon, she says.
This is the culmination of many years of basic research on her part, some of it on her own cells. In 2007, Loring had her own cells reprogrammed, so there’s a cell line that carries her DNA. “They’re just like embryonic stem cells, but personal,” she said.
Loring has another special interest—sending immature cells into space to be studied at the International Space Station. There, microgravity conditions make it easier for the cells to form three-dimensional structures, which could more easily lead to the growing of whole organs. In fact, her own cells have been sent to the ISS for study. “My colleagues and I have completed four missions at the space station,” she says. “The last cells came down last August. They were my own cells reprogrammed into pluripotent cells in 2009. No one else can say that,” she adds.
Future controversies and tipping points
Although the original SCNT debate has calmed down, more controversies may arise, Loring thinks.
One of them could concern growing synthetic embryos. The embryos are ultimately derived from embryonic stem cells, and it’s not clear to what stage these embryos can or will be grown in an artificial uterus—another recent invention. The science, so far done only in animals, is still new and has not been widely publicized but, eventually, “People will notice the production of synthetic embryos and growing them in an artificial uterus,” Loring says. It’s likely to incite many of the same reactions as the use of embryonic stem cells.
Bernard Siegel, the founder and director of the Regenerative Medicine Foundation and executive director of the newly formed Healthspan Action Coalition (HSAC), believes that stem cell science is rapidly approaching tipping point and changing all of medical science. (For disclosure, I do consulting work for HSAC). Siegel says that regenerative medicine has become a new pillar of medicine that has recently been fast-tracked by new technology.
Artificial intelligence is speeding up discoveries and the convergence of key disciplines, as demonstrated in Atala’s lab, which is creating complex new medical products that replace the body’s natural parts. Just as importantly, those parts are genetically matched and pose no risk of rejection.
These new technologies must be regulated, which can be a challenge, Siegel notes. “Cell therapies represent a challenge to the existing regulatory structure, including payment, reimbursement and infrastructure issues that 20 years ago, didn’t exist.” Now the FDA and other agencies are faced with this revolution, and they’re just beginning to adapt.
Siegel cited the 2021 FDA Modernization Act as a major step. The Act allows drug developers to use alternatives to animal testing in investigating the safety and efficacy of new compounds, loosening the agency’s requirement for extensive animal testing before a new drug can move into clinical trials. The Act is a recognition of the profound effect that cultured human cells are having on research. Being able to test drugs using actual human cells promises to be far safer and more accurate in predicting how they will act in the human body, and could accelerate drug development.
Siegel, a longtime veteran and founding father of several health advocacy organizations, believes this work helped bring cell therapies to people sooner rather than later. His new focus, through the HSAC, is to leverage regenerative medicine into extending not just the lifespan but the worldwide human healthspan, the period of life lived with health and vigor. “When you look at the HSAC as a tree,” asks Siegel, “what are the roots of that tree? Stem cell science and the huge ecosystem it has created.” The study of human aging is another root to the tree that has potential to lengthen healthspans.
The revolutionary science underlying the extension of the healthspan needs to be available to the whole world, Siegel says. “We need to take all these roots and come up with a way to improve the life of all mankind,” he says. “Everyone should be able to take advantage of this promising new world.”
Joy Milne's unusual sense of smell led Dr. Tilo Kunath, a neurobiologist at the Centre for Regenerative Medicine at the University of Edinburgh, and a host of other scientists, to develop a new diagnostic test for Parkinson's.
Forty years ago, Joy Milne, a nurse from Perth, Scotland, noticed a musky odor coming from her husband, Les. At first, Milne thought the smell was a result of bad hygiene and badgered her husband to take longer showers. But when the smell persisted, Milne learned to live with it, not wanting to hurt her husband's feelings.
Twelve years after she first noticed the "woodsy" smell, Les was diagnosed at the age of 44 with Parkinson's Disease, a neurodegenerative condition characterized by lack of dopamine production and loss of movement. Parkinson's Disease currently affects more than 10 million people worldwide.
Milne spent the next several years believing the strange smell was exclusive to her husband. But to her surprise, at a local support group meeting in 2012, she caught the familiar scent once again, hanging over the group like a cloud. Stunned, Milne started to wonder if the smell was the result of Parkinson's Disease itself.
Milne's discovery led her to Dr. Tilo Kunath, a neurobiologist at the Centre for Regenerative Medicine at the University of Edinburgh. Together, Milne, Kunath, and a host of other scientists would use Milne's unusual sense of smell to develop a new diagnostic test, now in development and poised to revolutionize the treatment of Parkinson's Disease.
"Joy was in the audience during a talk I was giving on my work, which has to do with Parkinson's and stem cell biology," Kunath says. "During the patient engagement portion of the talk, she asked me if Parkinson's had a smell to it." Confused, Kunath said he had never heard of this – but for months after his talk he continued to turn the question over in his mind.
Kunath knew from his research that the skin's microbiome changes during different disease processes, releasing metabolites that can give off odors. In the medical literature, diseases like melanoma and Type 2 diabetes have been known to carry a specific scent – but no such connection had been made with Parkinson's. If people could smell Parkinson's, he thought, then it stood to reason that those metabolites could be isolated, identified, and used to potentially diagnose Parkinson's by their presence alone.
First, Kunath and his colleagues decided to test Milne's sense of smell. "I got in touch with Joy again and we designed a protocol to test her sense of smell without her having to be around patients," says Kunath, which could have affected the validity of the test. In his spare time, Kunath collected t-shirt samples from people diagnosed with Parkinson's and from others without the diagnosis and gave them to Milne to smell. In 100 percent of the samples, Milne was able to detect whether a person had Parkinson's based on smell alone. Amazingly, Milne was even able to detect the "Parkinson's scent" in a shirt from the control group – someone who did not have a Parkinson's diagnosis, but would go on to be diagnosed nine months later.
From the initial study, the team discovered that Parkinson's did have a smell, that Milne – inexplicably – could detect it, and that she could detect it long before diagnosis like she had with her husband, Les. But the experiments revealed other things that the team hadn't been expecting.
"One surprising thing we learned from that experiment was that the odor was always located in the back of the shirt – never in the armpit, where we expected the smell to be," Kunath says. "I had a chance meeting with a dermatologist and he said the smell was due to the patient's sebum, which are greasy secretions that are really dense on your upper back. We have sweat glands, instead of sebum, in our armpits." Patients with Parkinson's are also known to have increased sebum production.
With the knowledge that a patient's sebum was the source of the unusual smell, researchers could go on to investigate exactly what metabolites were in the sebum and in what amounts. Kunath, along with his associate, Dr. Perdita Barran, collected and analyzed sebum samples from 64 participants across the United Kingdom. Once the samples were collected, Barran and others analyzed it using a method called gas chromatography mass spectrometry, or GS-MC, which separated, weighed and helped identify the individual compounds present in each sebum sample.
Barran's team can now correctly identify Parkinson's in nine out of 10 patients – a much quicker and more accurate way to diagnose than what clinicians do now.
"The compounds we've identified in the sebum are not unique to people with Parkinson's, but they are differently expressed," says Barran, a professor of mass spectrometry at the University of Manchester. "So this test we're developing now is not a black-and-white, do-you-have-something kind of test, but rather how much of these compounds do you have compared to other people and other compounds." The team identified over a dozen compounds that were present in the sebum of Parkinson's patients in much larger amounts than the control group.
Using only the GC-MS and a sebum swab test, Barran's team can now correctly identify Parkinson's in nine out of 10 patients – a much quicker and more accurate way to diagnose than what clinicians do now.
"At the moment, a clinical diagnosis is based on the patient's physical symptoms," Barran says, and determining whether a patient has Parkinson's is often a long and drawn-out process of elimination. "Doctors might say that a group of symptoms looks like Parkinson's, but there are other reasons people might have those symptoms, and it might take another year before they're certain," Barran says. "Some of those symptoms are just signs of aging, and other symptoms like tremor are present in recovering alcoholics or people with other kinds of dementia." People under the age of 40 with Parkinson's symptoms, who present with stiff arms, are often misdiagnosed with carpal tunnel syndrome, she adds.
Additionally, by the time physical symptoms are present, Parkinson's patients have already lost a substantial amount of dopamine receptors – about sixty percent -- in the brain's basal ganglia. Getting a diagnosis before physical symptoms appear would mean earlier interventions that could prevent dopamine loss and preserve regular movement, Barran says.
"Early diagnosis is good if it means there's a chance of early intervention," says Barran. "It stops the process of dopamine loss, which means that motor symptoms potentially will not happen, or the onset of symptoms will be substantially delayed." Barran's team is in the processing of streamlining the sebum test so that definitive results will be ready in just two minutes.
"What we're doing right now will be a very inexpensive test, a rapid-screen test, and that will encourage people to self-sample and test at home," says Barran. In addition to diagnosing Parkinson's, she says, this test could also be potentially useful to determine if medications were at a therapeutic dose in people who have the disease, since the odor is strongest in people whose symptoms are least controlled by medication.
"When symptoms are under control, the odor is lower," Barran says. "Potentially this would allow patients and clinicians to see whether their symptoms are being managed properly with medication, or perhaps if they're being overmedicated." Hypothetically, patients could also use the test to determine if interventions like diet and exercise are effective at keeping Parkinson's controlled.
"We hope within the next two to five years we will have a test available."
Barran is now running another clinical trial – one that determines whether they can diagnose at an earlier stage and whether they can identify a difference in sebum samples between different forms of Parkinson's or diseases that have Parkinson's-like symptoms, such as Lewy Body Dementia.
"Within the next one to two years, we hope to be running a trial in the Manchester area for those people who do not have motor symptoms but are at risk for developing dementia due to symptoms like loss of smell and sleep difficulty," Barran had said in 2019. "If we can establish that, we can roll out a test that determines if you have Parkinson's or not with those first pre-motor symptoms, and then at what stage. We hope within the next two to five years we will have a test available."
In a 2022 study, published in the American Chemical Society, researchers used mass spectrometry to analyze sebum from skin swabs for the presence of the specific molecules. They found that some specific molecules are present only in people who have Parkinson’s. Now they hope that the same method can be used in regular diagnostic labs. The test, many years in the making, is inching its way to the clinic.
"We would likely first give this test to people who are at risk due to a genetic predisposition, or who are at risk based on prodomal symptoms, like people who suffer from a REM sleep disorder who have a 50 to 70 percent chance of developing Parkinson's within a ten year period," Barran says. "Those would be people who would benefit from early therapeutic intervention. For the normal population, it isn't beneficial at the moment to know until we have therapeutic interventions that can be useful."
Milne's husband, Les, passed away from complications of Parkinson's Disease in 2015. But thanks to him and the dedication of his wife, Joy, science may have found a way to someday prolong the lives of others with this devastating disease. Sometimes she can smell people who have Parkinson’s while in the supermarket or walking down the street but has been told by medical ethicists she cannot tell them, Milne said in an interview with the Guardian. But once the test becomes available in the clinics, it will do the job for her.
[Ed. Note: A older version of this hit article originally ran on September 3, 2019.]