Introducing New Executive Co-Editor and Contributor Carmel Shachar

shachar_peopleCarmel Shachar, the Executive Director of the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School, will being joining Bill of Health as both executive co-editor and regular contributor. Carmel’s scholarship focuses on law and health policy, in particular the regulation of access to care for vulnerable individuals, health care anti-discrimination law and policy, and the use of all-payer claims databases in health care research.

Before coming to the Petrie-Flom Center, Carmel was previously a Clinical Instructor on Law at the Center for Health Law and Policy Innovation at Harvard Law School (CHLPI), where she helped lead CHLPI’s access to care and Affordable Care Act implementation work. During her time at CHLPI, Carmel focused on analyzing and translating health policy issues and opportunities for a broad range of audiences, including many federal and state-level health policy coalitions. She also coordinated and led a major multi-state initiative to document discriminatory benefit designs on the health insurance Marketplaces. Carmel previously practiced health care law at Ropes & Gray, LLP in Boston, Massachusetts. Carmel currently serves on the board of the Fishing Partnership Support Services as well as on the Institutional Animal Care and Use Committee of Boston University. Carmel graduated cum laude from Harvard Law School, where she was a student fellow at the Petrie-Flom Center, and the Harvard T. H. Chan School of Public Health.

Please join us in welcoming Carmel to Bill of Health!

Obamacare as Superstatute

By Abbe R. Gluck

I am have always been a partial skeptic about Eskridge and Ferejohn’s “superstatute” theory—their groundbreaking argument that certain statutes are special because they transform and entrench norms beyond the rights embodied in the statute itself. Some of my resistance stems from how hard it has been for scholars to identify and reach consensus on which statutes, apart from Eskridge and Ferejohn’s paradigm example of the Civil Rights Act (which beautifully fits the theory), fit the bill. (The other part of my resistance comes from dissatisfaction with the doctrinal implications of their theory.)

But since last October, Eskridge and Ferejohn have been paramount in my mind and I may need to eat some crow. It has been impossible to watch the past eight months of debate and drama over the Affordable Care Act without thinking of superstatute theory. I have nearly finished an article making that case, but given this week’s events, I could not resist putting the idea out there sooner.

The ACA seems to clearly satisfy the threshold criteria of superstatute theory. It has survived (several) election cycles, including a change in Administration. It has survived more political contestation than any statute in modern memory, including not only the 50 times Congress tried to repeal it under Obama and the four other, more serious, attempts that we just saw; but also four years’ worth of sabotage by Congress to starve to death with lack of funding. It also has survived not one, but two, high profile showdowns in the U.S. Supreme Court that had the potential to take the entire statute down (NFIB and King), and other important challenges to discrete aspects of the law (e.g., Hobby Lobby). Continue reading

Harvard Grad Students: Applications Due Friday, August 4! Petrie-Flom Center Student Fellowship, 2017 – 2018

PFC_Logo_300x300The Center and Student Fellowship

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics is an interdisciplinary research program at Harvard Law School dedicated to the scholarly research of important issues at the intersection of law and health policy, including issues of health care financing and market regulation, biotechnology and intellectual property, biomedical research, and bioethics. The Student Fellowship Program is designed to support closely-mentored student research in these areas. For more information on our recent fellows and their work, see our website and check out profiles of some of our past Fellows in the PFC Spotlight.

Eligibility

The student fellowship program is open to all Harvard graduate students who will be enrolled at the University during the fellowship year and who are committed to undertaking a significant research project and fulfilling other program requirements. Although the fellowship is open to all graduate students, including those in one-year programs, we encourage those who are in multi-year programs to wait until after their first year to apply. Continue reading

Harvard Grad Students: Apply Now! Petrie-Flom Center Student Fellowship, 2017 – 2018

PFC_Logo_300x300The Center and Student Fellowship

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics is an interdisciplinary research program at Harvard Law School dedicated to the scholarly research of important issues at the intersection of law and health policy, including issues of health care financing and market regulation, biotechnology and intellectual property, biomedical research, and bioethics. The Student Fellowship Program is designed to support closely-mentored student research in these areas. For more information on our recent fellows and their work, see our website and check out profiles of some of our past Fellows in the PFC Spotlight.

Eligibility

The student fellowship program is open to all Harvard graduate students who will be enrolled at the University during the fellowship year and who are committed to undertaking a significant research project and fulfilling other program requirements. Although the fellowship is open to all graduate students, including those in one-year programs, we encourage those who are in multi-year programs to wait until after their first year to apply. Continue reading

Vicarious Traumatization in the Wake of Community Violence: Healing the Helpers

This post is part of a series “Healing in the Wake of Community Violence: Lessons from Newtown and Beyond,” based on an event of the same name hosted at Harvard Law School in April 2017. Background on the series and links to other blog posts are here.

By Michelle Bosquet Enlow, PhD

depression_slideWhen a horrific violent event occurs, the community’s thoughts and efforts to help naturally extend out to the injured and traumatized survivors and the loved ones of those killed. However, the effects of such traumatic events ripple out beyond those so directly impacted. According to the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 2013), the definition of trauma includes not only direct exposure to actual or threatened death or serious injury, but also witnessing such an event or experiencing repeated or extreme exposure to aversive details of such an event. Under this more comprehensive definition, the circle of affected individuals in the wake of community violence widens to include professionals and community leaders who are tasked with tending to the safety, medical, emotional, instrumental, and spiritual needs of those wounded. These “helpers” include first responders (e.g., police officers, emergency medical technicians), medical and mental health professionals, case workers, and religious leaders. Continue reading

Newtown: A Public Health Law Perspective

This post is part of a series “Healing in the Wake of Community Violence: Lessons from Newtown and Beyond,” based on an event of the same name hosted at Harvard Law School in April 2017. Background on the series and links to other blog posts are here.

By Wendy E. Parmet

No man is an island

Entire of itself,

Every man is a piece of the continent,

A part of the main

—John Donne, 1624

Like John Donne’s famous Meditation XVII, Newtown, Kim Snyder’s documentary about the aftermath of the 2012 massacre at the Sandy Hook elementary school in Connecticut, forces us to reflect on the inter-connectedness of human life. As Newtown shows with power and poignancy, the victims of that awful massacre were not islands. They were a part of a continent comprised of their families, friends, community, and indeed, all who recall the awful day they were killed.

parmet-chartThis inescapable reality, that our lives and deaths can affect and even traumatize others, is perhaps sufficient to proclaim that gun violence is a public health problem. None of the over 30,000 Americans who die each year from gun violence (most by suicide), are islands. Nor are any of the over 78,000 Americans who are injured by firearms. All are part of the continent. Gun violence affects us all.

But gun violence is a public health problem for another, equally important reason. As with other public health problems, from obesity to HIV/AIDS, the risk that individuals face with respect to firearms is influenced significantly by factors that lie outside their own control. This is not simply because the victims of the Sandy Hook massacre did nothing, and could do nothing, to cause their own death. It is also because different populations face different levels of risk. Race, age, income, gender, geography and a host of other variables determine one’s risk of dying or being injured by firearms.  Continue reading

Newtown: A Story of Collective Grief and Trauma

This post is part of a series “Healing in the Wake of Community Violence: Lessons from Newtown and Beyond,” based on an event of the same name hosted at Harvard Law School in April 2017. Background on the series and links to other blog posts are here

By Kim Snyder, Director and Producer of Newtown

We believe we must be the family of America, recognizing that at the heart of the matter we are bound one to another. – Mario M. Cuomo

newtown_sign_flags_webWhen I first landed in Newtown over four years ago following the horrific tragedy at the Sandy Hook Elementary School, I was drawn first and foremost to a story of collective grief and trauma. Seeing the story in the larger context of commentary on America’s problem with gun violence came later. My producing partner, Maria Cuomo Cole, and I both felt we hadn’t seen a documentary that chronicled the long tail of collective trauma for years out, after the cameras had left. We also hadn’t seen this story told from the perspective of an entire town. It is important to note that Newtown is a community of 28,000 people, and the vision of the film sought to represent a sample of voices from various sub-communities. Over the course of the next three to four years, we built trust with members of the Newtown community and explored the trajectory of collective trauma and resilience as it reverberated throughout Newtown and beyond. Not surprisingly, survival guilt was a pervasive theme that emerged. Through the perspectives of multiple sub-communities of the town—the educators, first responders, medical providers, clergy, neighbors, and youth—we came to observe a journey of fracture, isolation, and repair as this courageous community struggled to survive in the aftermath of the unthinkable.  Continue reading

Healing in the Wake of Community Violence: Lessons from Newtown and Beyond

This post is part of a series “Healing in the Wake of Community Violence: Lessons from Newtown and Beyond,” based on an event of the same name hosted at Harvard Law School in April 2017. Background on the series and links to other blog posts are here.

By Cristine Hutchison-Jones, PhD

Community members gather at a memorial service after the Sandy Hook school shooting. Still from the documentary Newtown.

Community members gather at a memorial service after the Sandy Hook school shooting. Still from the documentary Newtown.

On June 12, 2016, an armed man walked into the Pulse night club—a gay bar in Orlando, Florida, packed with patrons enjoying Latin night—and opened fire. By the time the police shot the gunman three hours later, he had killed 49 people and wounded more than 50 others in the deadliest mass shooting by a single shooter in American history.

As we mark today’s anniversary, the news is awash with stories of the way the shooting continues to impact people a year later. Much of the coverage—then and now—has rightfully focused on those most directly affected: the victims and their loved ones, and the LGBTQ and Latinx communities who were targeted and disproportionately impacted by the attack. But amidst the coverage of survivors and their loved ones, some stories are taking a step back to look at the broader impact. This is in keeping with a recent trend to discuss the lasting effects of incidents of mass violence on the wider community. Today’s coverage of the Pulse night club shooting includes stories that focus on the EMTs, police officers, and health care workers who were first on the scene and treated victims in the immediate aftermath of the attack, and on the impact of secondary trauma in their lives. Continue reading

The Global Virome Project: Understanding Our Viral Enemies to Create a Safer World

We are pleased to present this symposium featuring commentary from participants in the “Between Complacency and Panic: Legal, Ethical and Policy Responses to Emerging Infectious Diseases” conference held on April 14, 2017, at Northeastern University School of Law. The conference was sponsored by the Center for Health Policy and Law and the American Society for Law, Medicine, and Ethics (ASLME), with support from The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. 

By Ana S. Ayala

There is no doubt that viruses, emerging and re-emerging, have become an imminent global health threat. Starting in 2014, we saw the decimation of West African countries as a result of the Ebola epidemic. Soon after came the Zika outbreak that continues to pose a threat to countries in the Americas and around the world. Since December 2016, Brazil has been experiencing a rise in yellow fever cases , and deaths, among humans and monkeys alike. Colombia and Peru have already reported probable cases. As a response to rising human cases of the H7N9 bird flu, China just ordered the closure of all poultry markets in the eastern province of Zhejiang to stop the trade of live poultry.

Experts warn that the question is not whether but when a pandemic will hit. Unknown or little-known viruses currently looming in animal populations undetected pose a especially dangerous risk–we have little to no experience with them, we do not know whether or when they will spill over to humans, and we do not know where they will emerge next. Continue reading

Emergency Preparedness: Is Quarantine All We Have to Offer?

We are pleased to present this symposium featuring commentary from participants in the “Between Complacency and Panic: Legal, Ethical and Policy Responses to Emerging Infectious Diseases” conference held on April 14, 2017, at Northeastern University School of Law. The conference was sponsored by the Center for Health Policy and Law and the American Society for Law, Medicine, and Ethics (ASLME), with support from The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. Stay tuned for more posts!

By Wendy K. Mariner

On August 1, 2014, while Ebola raged in Guinea, Liberia, and Sierra Leone, Donald Trump tweeted: “The U.S. cannot allow Ebola infected people back! People that go to faraway places to help out are great-but must suffer the consequences.”  Most experts agree that epidemics are best avoided where the population is educated, well-nourished, and resilient, with access to effective medical and public health resources. Yet, too often, the first response to the threat of an epidemic is to keep people out of the country or quarantine them. It is worth considering why this is so, and how we can do better.

A New Foreign and Interstate Quarantine Rule

On January 19, 2017, the day before Trump’s inauguration as President, the Centers for Disease Control and Prevention (CDC) issued final regulations for detaining individuals suspected of harboring a “quarantinable” communicable disease (QCD). Why would the Obama Administration issue new rules? The explanation in the Federal Register offers 2 reasons: (1) responding to the Ebola epidemic and outbreaks like MERS and measles; and (2) clarifying and codifying “current practice” “to make the public aware of their use.” Continue reading

Harvard Grad Students: Apply Now! Petrie-Flom Center Student Fellowship, 2017 – 2018

PFC_Logo_300x300The Center and Student Fellowship

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics is an interdisciplinary research program at Harvard Law School dedicated to the scholarly research of important issues at the intersection of law and health policy, including issues of health care financing and market regulation, biotechnology and intellectual property, biomedical research, and bioethics. The Student Fellowship Program is designed to support closely-mentored student research in these areas. For more information on our recent fellows and their work, see our website and check out profiles of some of our past Fellows in the PFC Spotlight.

Eligibility

The student fellowship program is open to all Harvard graduate students who will be enrolled at the University during the fellowship year and who are committed to undertaking a significant research project and fulfilling other program requirements. Although the fellowship is open to all graduate students, including those in one-year programs, we encourage those who are in multi-year programs to wait until after their first year to apply. Continue reading

When a Nurse Needs an Attorney: US Quarantine Policy

We are pleased to present this symposium featuring commentary from participants in the “Between Complacency and Panic: Legal, Ethical and Policy Responses to Emerging Infectious Diseases” conference held on April 14, 2017, at Northeastern University School of Law. The conference was sponsored by the Center for Health Policy and Law and the American Society for Law, Medicine, and Ethics (ASLME), with support from The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. Stay tuned for more posts!

By Kaci Hickox, MPH, MSN, RN

As new cases of Ebola in the Democratic Republic of Congo (DRC) are announced, I am reminded of the importance of applying lessons learned from U.S. quarantine policies during the 2014 West Africa Ebola outbreak. I watched the suffering of entire families and communities facing the largest Ebola outbreak in history. During my Ebola training in Brussels, I will never forget hearing an Ebola expert explain, “Remember to have compassion because this disease turns peoples’ loved ones into a biological hazard.” I remember the moment I understood Ebola with my heart, not merely my head, when a young woman admitted to the Doctors Without Borders/Médecins Sans Frontières (MSF) Ebola Treatment Unit in Bo, Sierra Leone, explained, “Nineteen of my family members have died of Ebola.”

Yet, in the midst of extreme fear and suffering, I also witnessed the profound courage of the staff responding to stop the outbreak. On my last day in the unit we had celebrated the discharge of 39 Ebola survivors. Offering isolation, testing, and treatment for persons who developed symptoms of Ebola was necessary to stop disease transmission and finally, after two years of response, the outbreak was declared over in December 2015! In this globalized world, we must be prepared to react not only to Ebola, but to any infectious disease threat with courage instead of fear, science instead of politics.

How do we ensure courageous responses to infectious disease threats? Continue reading

The First Human Body Transplant – Ethical and Legal Considerations

By Ana S. Iltis, PhD

brain_glowingprofileTo what lengths should we go to preserve human life? This is a question many are asking after hearing that three men plan to make medical history by conducting the first human head transplant. Or, rather, whole body transplant. Italian neurosurgeon Dr. Sergio Canavero and Chinese surgeon Dr. Xiaoping Ren plan to provide a Russian volunteer, Valery Spiridonov, a new body. During the procedure, Spiridonov’s body and head would be detached and, with the help of a crane, surgeons would move the head and attach it to the donor body.  But is this ethical? What role might law and regulation play in monitoring them or in assessing their conduct after the fact?

Critics call the plan crazy, unethical, and sure to fail. The likelihood of success is very low and the risk of Spiridinov dying is high. Spiridonov says that as soon as animal studies confirm the possibility of survival, the risks will be worth taking. He has Werdnig-Hoffmann Disease, a genetic disorder that destroys muscle and nerve cells. He is confined to a wheelchair and has lived longer than expected. Body transplantation offers him the best chance at a life worth living. Continue reading

Genomes on-line and the Health of Privacy

By Effy Vayena and Alessandro Blasimme

Technology Concept

In January 1999, Scott McNealy, CEO of Sun Microsystems (now part of Oracle Corporation), announced that we should no longer be concerned with privacy, since consumers ‘have zero privacy anyway’ and should just ‘get over it.’ His argument, that in the era of information technology we have become unable to protect precisely what such technology relies on and delivers (information) has met the full spectrum of imaginable reactions – from outrage to enthusiastic endorsement. Many different cures have been proposed to treat at least the symptoms of the disease caused by the loss of privacy. Yet there is little disagreement concerning the diagnosis itself: privacy does not enjoy an enviable state of health. Recent emphasis on big data and their inescapable presence have only made the prognosis dimmer for the once cherished ‘right to be let alone’ – as Samuel D. Warren and justice Louis D. Brandeis famously defined privacy back in 1890.

Such a deteriorating outlook should sound especially alarming in the fields of healthcare and medical research. In such domains, professional norms of medical confidentiality have long ensured sufficient levels of privacy protection, accountability, and trust. Yet we are told that this may no longer be the case: sensitive, personal, health-related information – just like any other type of information – now comes in electronic formats, which makes it much more reachable than before, and increasingly difficult to protect. Imagine the consequences this may have in the case of genomic data – arguably one of the most sensitive forms of personal information. Should such information fall into the wrong hands, we may face harsh consequences ranging from discrimination to stigmatization, loss of insurance, and worse. To enjoy the right to genomic privacy, one has to be able to exercise some meaningful amount of control over who gets access to her genetic data, be adequately shielded from harms of the sort just mentioned, and yet retain the possibility of deciphering what’s written in her DNA for a variety of purposes – including, but not limited to, health-related ones. All this is undoubtedly demanding. All the more so now that we know how even apparently innocent and socially desirable uses, like genomic research employing anonymized DNA, are not immune from the threat of malicious re-identification.

In light of such considerations, one might be led to think that health privacy protection is a lost cause. In fact, one may go even further and argue that, all things considered, we shouldn’t worry too much about the decline of privacy. Having our sensitive data in a state of highly restricted accessibility, so the argument goes, prevents us from extracting medically valuable insight from those data and hinders medical discovery from which we may all benefit. Continue reading

Quantified Self as Personal (Citizen) Science

This post is part of Bill of Health’s symposium on Critical Studies of Citizen Science in Biomedical Research. Here, drawing upon interviews with self-trackers, Nils Heyen analyzes the different types of activities that self-trackers engage in and reflects on what kind of knowledge they produce. Background on the symposium is here. You can call up all of the symposium contributions published by clicking here.

By Nils B. Heyen

Quantified Self (QS) is the name of a growing international movement of people united by mainly one thing: an interest in collecting data about their own bodies and lives in order to obtain insights into their everyday health or performance. “Self knowledge through numbers” is the movement’s slogan, and indeed QS can be seen as an emerging field of knowledge production. Less obvious is, however, what type of knowledge is actually being produced here, how this knowledge production is to be characterized and how it relates to both science and citizen science. Based on interviews with self-trackers and participant observations of QS meetups and conferences in the context of an explorative empirical study, my post briefly deals with these questions (see this book chapter for more extensive considerations). Accordingly, my intention here is not to give a comprehensive classification or interpretation of the QS movement as a cultural phenomenon, but simply to shed some light on the aspect of knowledge production and on the relationship of self-tracking and citizen science. Continue reading

Petrie-Flom Center Welcomes New Executive Director!

PFC Logo-New-Horizontal_slide

shachar_peopleWe are thrilled to announce that Carmel Shachar, JD, MPH (HLS ’10, HSPH ’10) will join the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School as our next Executive Director. In this role, Carmel will be responsible for oversight of the Center’s sponsored research portfolio, event programming, fellowships, student engagement, development, and a range of other projects and collaborations.

“We are delighted that Carmel will be joining the Center,” said I. Glenn Cohen, Professor of Law and Faculty Director of the Petrie-Flom Center. “Throughout her career, Carmel has focused on designing, developing, and executing large health law and policy projects. This expertise and leadership will be a strong resource for the Center as it implements the vision for its second decade.”  Continue reading

Citizen Science and Precision Medicine: a Route to Democracy in Health?

This post is part of Bill of Health’s symposium on Critical Studies of Citizen Science in Biomedical Research. Here, Ilaria Galasso and Giuseppe Testa share their comparative case studies of the Precision Medicine Initiative and the 100K Genomes Project, examining the kinds of citizen science pursued in precision medicine projects. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Ilaria Galasso and Giuseppe Testa

Our post investigates the participatory dimensions in health and healthcare by analysing the cutting-edge approach of precision medicine, its societal impact, its discursive framings and its (potential) contribution to further public health and civic engagement.

Precision Medicine is defined by the NIH as “a groundbreaking approach to disease prevention and treatment based on people’s individual differences in environment, genes and lifestyle”(nih.gov), aimed at “delivering the right treatments, at the right time, to the right person”(whitehouse.gov).To pursue this aim, precision medicine efforts typically work on large cohorts of people to dissect individual differences in health and disease. Thence, massive large-scale involvement of “lay” participants is a key resource of precision medicine initiatives. Continue reading

Citizen Science: Non-scientists enable sampling conditions in ocean sciences

This post is part of Bill of Health’s symposium on Critical Studies of Citizen Science in Biomedical Research. In light of calls for stronger ‘crowdsourcing’ oceanic data production, Gregor Halfmann focuses in on the practices of non-professional seafarers who create scientific knowledge of the oceans as a means of shedding light on citizen science practices in medicine and science more broadly. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Gregor Halfmann

Outside of the medical sciences, the relationship between science and non-professionals has often developed in a more harmonious and less fraught manner. A consideration of ocean sciences, as an example of practices in the environmental sciences, may call attention to different conditions of and approaches to citizen science, and introduce new and potentially fruitful perspectives.

The size and adverse nature of the oceans, the variety of temporal and spatial scales relating to physical, biological, and chemical oceanic processes, and the high economic demands of operating research vessels impede the continuous production of important oceanographic data. As in other environmental sciences, oceanography has a long history of practices involving professional as well as non-professional seafarers, who create knowledge of the oceans. Yet, in light of today’s digital network technologies and the methodological simplicity of many fundamental oceanographic observations, ocean scientists have recently called for stronger “crowdsourcing” of oceanographic data production, in particular with citizen science projects (Lauro et al., 2014). A common way to characterize the involvement and contribution of people without scientific credentials in research processes is a view of participants being deployed as “collectors” of data or samples; volunteering citizens, who follow tight instructions provided by scientists, resulting in a contribution of materials and data (e.g. samples of water and organisms, reports of species sightings, water temperature data) for the scientists to interpret. Continue reading

Health in the Factory: The Historical Roots of Italian Citizen Science

This post is part of Bill of Health’s symposium on Critical Studies Citizen Science in Biomedical Research. In this post, Giulia Frezza and Mauro Capocci offer a historical look at how workers and scientists shaped a new approach to occupational and environmental health in Italy, asking if current practices of citizen science share the lineages of such radical movements. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Giulia Frezza and Mauro Capocci

The radical movement  critique of science in the turbulent decades of 1960s-70s in Italy, is a significant episode that can be useful for a critical reappraisal of contemporary definitions of the scope and the aims of Citizen Science (CS).

In those years, the deep social transformation of Italian society also involved a new perception of science and technology which emphasized that science was not neutral. Far from being a tool for workers’ empowerment, it became apparent that science and technology were ideologically determined. Trespassing the orthodox boundaries of Marxism, a group of scientists advocated a new relationship between science and society, while at the same time workers understood that they needed a new alliance with scientists in order to foster real social progress. An early result of this movement was the involvement of researchers and health professionals in the struggle for better working conditions within the factory. Through their personal experience and developing hegemonic power, workers criticized the traditional notions of risk management and health protection by actively collecting data and pointing to flaws in the existing industrial systems and the science behind them. Eventually, this activism resulted in a widespread science-based “Health in the Factory” movement. At the same time, a large number of sympathetic physicians and epidemiologists engaged in social efforts to create groups and associations that lent scientific support to activists. This proved to be of paramount importance when tragic accidents happened, such as the Seveso and Manfredonia chemical explosions that occurred within the span of a few months in 1976. Such tragedies proved instrumental for breaking “the illusory boundary” separating the factory and the outside world; the impact of what took place inside the production sites was far-reaching. Industrial accidents eventually connected local ecology, the city environment, families, citizens, scientists studying harmful substances in the lab, and society as a whole. These events were a turning point for spreading social awareness, allowing local struggles to turn into national developments, and resulting in the evolution of the public health system and regulations of risk prevention (exposure thresholds, health assessment of working conditions, prevention and management of industrial accidents). Continue reading

Citizen Science where there are no citizens: participation and exclusion in Antarctic science

This post is part of Bill of Health’s symposium on Critical Studies of Citizen Science in Biomedical Research. Challenging the lay-professional divide in portrayals of citizen science, Vanessa Heggie examines a case study of an expedition to the Antarctic in the 1950s, where participants were at once researchers, research subjects, experts, and technicians. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Vanessa Heggie

The Antarctic environment poses plenty of challenges for scientists, but for those who need human participants there’s the additional problem of finding and recruiting ‘citizen scientists’.  With no indigenous residents, the residents of the Antarctic are a carefully selected population, most of whom are already doing some form of scientific work and juggling multiple identities and roles.  Radio operators take readings for meteorologists, geologists volunteer as guinea pigs for physiologists, and botanists collect rocks. There isn’t a clear divide between ‘scientist’ and ‘lay participant’; often human subjects, whether they’re collecting data or acting as human guinea-pigs, understand the principles of experimental design, and are able to give feedback about the experiment itself, not just the data generated.  At what point do citizen scientists become experimental collaborators? And who gets left out of these relationships? Continue reading