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

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

New Blog Symposium: Between Complacency and Panic – Legal, Ethical and Policy Responses to Emerging Infectious Diseases

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 E. Parmet and Jennifer L. Huer

Public health is often invisible. In contrast to health services, public health interventions usually operate behind the scenes, reducing risks to broad populations. No one can say who was saved, what deaths were prevented.

For public health, this invisibility presents political and budgetary challenges. Without clear beneficiaries, public health has lacked the political support and dollars allocated to health services. This challenge may be even more formidable today as the Trump Administration seeks enormous cuts to public health programs, while questioning settled public health science.

In the face of such challenges, it may be tempting for public health advocates to emphasize the dangers of emerging infectious diseases. Over the last forty years, a multitude of new or previously tamed infectious diseases such as HIV/AIDS, SARS, Ebola, and Zika have emerged, wrecking morbidity and mortality, and causing panic around the globe. During these outbreaks, public health’s importance becomes, at least briefly, all-too-apparent. 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

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

Do–It–Yourself Biology as Citizen Science: Taking Participation a Step Further

This post is part of Bill of Health’s ongoing blog symposium on Critical Studies of Citizen Science in Biomedical Research. Taking a closer look at the role of public participation in science, Rosen Bogdanov and Eduard Aibar argue that participation in DIY-biology is best understood as a collaborative experiment in technoscientific practices. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Rosen Bogdanov and Eduard Aibar

We begin our small blog contribution from the very proposition suggested by our subtitle – “taking participation a step further”. What do we mean by “a step further” and is participation inherently linear such that we can take it to another level?

Contrary to many accounts of public participation in science (especially those that aim to increase it), we don’t assume that scientific innovation will somehow speed up, or become more accountable, with more public input. Rather, recalling Michael Gibbons and Helga Nowotny’s work (2001), we argue that the production of scientific knowledge can be made more “socially robust” by including other perspectives. This, however, presents a dilemma when thinking about the case of “citizen science” as the current flagship field for public participation in science. Often, citizen science projects are presented as data-driven ventures whereby citizens are invited to participate in a specific stage, or stages, of this process, or they are framed from the start as the non-expert “public” that participates in collecting or analyzing data. Continue reading

More than Data Collectors: Valuing Data Expertise Beyond Professional Science

This post is part of Bill of Health’s ongoing blog symposium on Critical Studies of Citizen Science in Biomedical Research. Responding to controversies over the validity of patient and patient groups’ contributions to biomedical research, in this post, Sabina Leonelli turns to the environmental sciences in order to examine the construction of expertise in participatory research. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Sabina Leonelli

In the context of biomedical research, particularly following the emergence of evidence-based medicine, extensive debate surrounds the choice and evaluation of appropriate sources of evidence. Contributions from patients and patients’ groups generate substantial scientific, ethical and methodological controversies, and clinicians often regard with suspicion any dataset that is gathered by non-professionals outside controlled conditions. At the same time, the collection of health data through social media is becoming increasingly visible as a potential source of information, with defenders of precision medicine going as far as to value those strategies of data collection over traditional clinical trials. To shed some light on this situation and its potential pitfalls, it is useful to consider the experience of fields such as botany, ethology, oceanography, environmental science and ornithology, which have long relied extensively on contributions by non-professionals. With the recent emergence of “citizen science” projects, these contributions are often construed in the form of data offerings, with citizens volunteering to collect data that can be fed into scientific projects – as in the well-known cases of eBird and eOceans. Just as often, researchers conceptualise these offerings as an opportunity to get hold of data that would otherwise remain beyond their reach. Due to their location, occupation or hobbies, citizens may be able to document circumstances and events of interest to researchers, but which researchers themselves do not have the resources and personnel to identify and witness in person. Thus, citizens are positioned as precious data collectors, whose engagement with science consists in the provision of potential sources of evidence. At the same time, a line is drawn between such data collectors and professional scientists as the veritable data experts, who can direct and situate citizens’ efforts to procure the raw materials for scientific investigation. In this configuration, key questions such as what the evidence will be useful for, and whether the data will be of good enough quality to play that role, are left to the scientists in charge; and data collectors remain peripheral to the formulation and development of research projects and related knowledge claims. Continue reading

Experiential Knowledge, Public Participation, and the Challenge to the Authority of Science in the 1970s

This post is part of Bill of Health’s ongoing blog symposium on Critical Studies of Citizen Science in Biomedical Research. Below, Bruno Strasser and Dana Mahr trace the rise of experiential knowledge in the 1970s, probing the historical origins of participatory research through the examples of urban planning, women’s health, civil rights, and toxic sites in the United States. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Bruno J. Strasser & Dana Mahr

In his Social History of Truth, Steven Shapin argued that, in the 17th century, the credibility of the natural philosopher’s testimony — but not that of the drunken sailor — derived from his social status as a gentleman (Shapin 1994). By the 19th century, with the professionalisation of science, the credibility of knowledge claims came to be tied to the professional expertise of the “scientist” and to the institutions where he, or more rarely she, worked. How then, in the 21st century, did a discourse emerge granting “lay people”, “amateurs”, or “citizen scientists” — which are neither gentlemen, nor scientists, and often work from home — credibility in the co-production of scientific knowledge? There is no simple answer to this question, yet we would like to offer one in this contribution.

Three narratives have tried to explain the historical origins of current participatory research. The first looks back at the contributions of amateur naturalists in the 19th century, the second at radical scientists’ movements in the 1960s, and the third at the personal computer revolution in the 1990s (Strasser et al. 2017 – forthcoming). Here, we suggest a different narrative, focussed on the rise of “experiential knowledge” in the 1970s. In current participatory research, the challenges to the monopoly of expert knowledge — experimental and clinical — rest in part on the claim that lay people’s experience of their own bodies and environments can be reliable sources of scientific knowledge. The ability of lay people to identify changes in their bodies (PatientsLikeMe), to notice disturbances in their environment (Community Based Environmental Monitoring Network), and even to recognise subtle patterns in images of galaxies (GalaxyZoo) or to fold proteins in three dimensions (Foldit), all rest on intimate bodily experiences. It is not reason at work, but bodily perception; not objective facts, but subjective sensations; not experiment, but experience. Then how can it be considered legitimate science, knowing that the very exclusion of experiential knowledge was part of the making of modern science? By the 1970s, we suggest, in the turmoil of the counterculture, activists challenging the authority of science attempted to reclaim experiential knowledge as a legitimate source of scientific knowledge, reopening the epistemological toolbox of science. The examples of urban planning, women’s health, civil rights, and toxic sites illustrate how such a transformation might have taken place.   Continue reading

Self-reporting and participatory health platforms: Empowerment through sharing information about oneself online?

This post is part of Bill of Health’s ongoing blog symposium on Critical Studies of Citizen Science in Biomedical Research. Here, Dana Mahr examines claims of empowerment in participatory health platforms and the implications of this for participants and biomedical research more broadly. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Dana Mahr

A new social contract for health?

Since the beginning of the 21st Century, self-reported experiential knowledge of patients (alongside other data) has often been communicated and promoted as an untapped treasure for both medical research and patient empowerment (Goetz 2008). Although this portrayal lacks historical and sociological accuracy (the sharing of experience has always been part of medical practice; e.g. the process of anamnesis) it informs a prominent discourse on so-called “P4-medicine”: “prediction”, “prevention”, “participation” and “personalization” (Hood 2013). Within this coordinate system of concepts, practices of participatory self-reporting (via fitness tracking, information sharing in social health networks, etc.) are seen as steps towards a “New Social Contract for Medical Innovation” (Horne et al. 2015).

Advocates of this social contract claim that it “tackle[s] the rising tide of chronic diseases and transform[s] healthcare from a disease-oriented provision to a true health maintenance service” (Horne et al. 2015). The core element of this new social contract is the collection and use of large amounts of participatory generated data for the democratization of biomedical research. The growing variety of online participatory medicine platforms can be interpreted as part of this trend. Other relevant aspects, however, are market interests, bio-governmentality, and people’s curiosity for self-exploration, self-presentation, and the urge to compare oneself with others. This is most evident in direct-to-consumer (DTC) genetic testing. The slogan of the DTC company 23andMe is telling in this respect: “Welcome to you”. Continue reading

What is Citizen Science anyway? Introduction to the new blog symposium “Citizen Science”

We are pleased to present this symposium featuring commentary from participants in the “Critical Studies of Citizen Science in Biomedical Research” conference held on the March 2, 2017, at King’s College London. Organized by different projects concerned with citizen science in Kiel (A. Buyx) & London (B. Prainsack), Exeter (S. Leonelli), and Geneva (B. Strasser),  the event took a critical look at the role of citizen science in biomedical research in the 21st Century. Presenters from the event give us a peek into their work in the forthcoming posts, which will appear daily. 

By Barbara Prainsack, Alena Buyx, and Amelia Fiske

As many of our teachers have told us, and as we have repeated told to our students: if you have to insist that you are engaging in a “critical” analysis, then something is wrong. We should be able to assume that as social scientists, ethicists, or scholars more generally we always take a critical distance to our materials. So why did we call a meeting on citizen science in biomedicine “critical studies of”?

The reason was one of emphasis: we wanted to bring together people who were not merely cheerleaders for citizen science, offering analyses that remove friction points in the name of making citizen science even better (whatever ‘better’ might mean in this respect). Instead, we were looking for work that challenges the very assumptions portraying citizen science as novel and noteworthy, or as something particularly problematic and in need of ethical attention. We did so not because we necessarily disagree with these portrayals, but because we felt that we should pay as much attention to continuities as to discontinuities; to old practices as well as to new ones; and to offline as well as online collaboration in scientific knowledge creation. We felt that only if we explored the values and goals underpinning practices and initiatives that use the label “citizen science” can we approach the questions that matter most to us: How do these practices change the distribution of power between different actors? Who is (dis)empowered by them? Who or what gains visibility, and who or what is obscured? What new patterns of inclusion or exclusion emerge as a result? We have long been interested in the concept of solidarity and its role in biomedicine (see our new book with Cambridge University Press), and we wanted to know if some of the citizen science initiatives could be seen as emerging forms of solidaristic practice. Continue reading

Medical Records and the NFL Combine

This post is part of our Blog Symposium “Applying the Americans with Disabilities Act and Genetic Information Nondiscrimination Act to the NFL Workplace.” Background on the symposium and links to other blog posts are here

By Jessica L. Roberts

In our recent law review article, published by the University of Pennsylvania Law Review, my co-authors and I explore exactly what kinds of player health data the NFL and its Clubs can lawfully obtain from NFL hopefuls, as well as from current players.  While the Clubs and the NFL have strong interests in accessing all kinds of information about players, current federal employment laws—mainly the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act—limit the collection of employee health data.  Significantly, these statutes not only restrict how an employer can use its employees’ health data.  They also restrict the ability of the employer to even ask.  Among the major takeaways of our paper was that, via National Football Scouting, the NFL and its Clubs may be violating these laws with the interviews and medical examinations that take place during the National Scouting Combine.  Our article focused primarily on evaluative technologies: things like physicals, athletic drills, wearables, ingestibles, and genetic tests.  But what about when the source of the player health data is not a technique or technology but rather simply a medical record?  In this blog post, I take a closer look at how the ADA and GINA apply to requests for medical records.

Medical Waivers at the Combine

As explored in-depth in a recent installment of this blog symposium, prospective players are particularly vulnerable because they are not yet members of the NFL Players Association (NFLPA), and thus cannot reap the benefits of the collective bargaining agreements it negotiates.  The inferior bargaining position of aspiring players is particularly apparent considering the medical waivers they sign to even participate in the Combine.  One waiver authorizes a mind-bogglingly long list of parties—including health care providers, physicians, mental health professionals, hospitals, schools, student health services, and former trainers and teams, even at the amateur level—to release and to discuss the players’ medical records with an equally long list of potential recipients—including National Football Scouting, the NFL and all its Clubs, their representatives, agents, medical staff, team physicians, and trainers, in addition to third-party physicians.  The player consents to share: Continue reading

No Seat at the Table: The Legal Status of Players at the NFL Scouting Combine

This post is part of our Blog Symposium “Applying the Americans with Disabilities Act and Genetic Information Nondiscrimination Act to the NFL Workplace.” Background on the symposium and links to other blog posts are here

By Michael McCann

In Evaluating NFL Player Health and Performance: Legal and Ethical Issues 165 U. Pa. L. Rev. 227 (2017), the authors (Jessica L. Roberts, I. Glenn Cohen, Christopher R. Deubert and Holly Fernandez Lynch) compellingly explain why the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act supply legal protections to football players at the NFL Scouting Combine (“Combine”). In this blog post, I stress the need for such protections in light of the unusual—and vulnerable—legal status of players at the Combine.

The Combine and its relationship to the NFL Draft

Held in late February and early March, the Combine is the annual scouting spectacle for NFL teams. Over seven days, NFL teams evaluate college football players who are eligible for the NFL Draft. The NFL Draft, of course, is the exclusive method of entry for players into the NFL: only players who are either drafted or who are exposed to NFL Draft and not selected are eligible to play in the NFL.

Held each April, the NFL Draft is ostensibly designed to promote parity in the NFL. For teams that fail to make the playoffs, draft order is based on inverse order of teams’ records. This means that the very worst team obtains the first overall pick and thus the chance to draft the best available player. Continue reading