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

The Americans with Disabilities Act and Discrimination Based on Predictive Health Data

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 Sharona Hoffman

The excellent article, “Evaluating NFL Player Health and Performance:  Legal and Ethical Issues,” argues that some of the existing assessments of NFL players appear to violate the Americans with Disabilities Act (ADA).  The authors call for revisions to the ADA to clarify the statute’s applicability to professional football and the scope of permitted medical examinations under the ADA.

I would like to take the argument a step further and urge that the ADA be extended to cover employer conduct that is now outside the statutory scope but is highly relevant to athletes’ employment prospects.  Specifically, the ADA should cover discrimination based on predictions of future physical and mental impairments. Continue reading

New Blog Symposium! Applying the Americans with Disabilities Act and Genetic Information Nondiscrimination Act to the NFL Workplace

By Christopher R. Deubert

In recent years, there has been a growing amount of attention to different types of technologies (wearable and otherwise) that can measure various health- and performance-related metrics for athletes (see here, here, here, here, and here).  While no categorization is perfect, these technologies generally fall into eight categories: (1) player tracking, (2) heart rate, (3) sleep, (4) readiness, (5) body temperature, (6) force, (7) hydration, and (8) head impact sensors. Teams may use these technologies for evaluating and improving player performance, as well as for preventing or minimizing injury.

These new technologies are exciting, but they also raise concerns about how the data they generate might be used unfavorably towards players. For example, a team might discover that a player is no longer creating the same amount of force as he used to, which could threaten the player’s status with the team.

It was these types of concerns that led our team – Jessica L. Roberts, I. Glenn Cohen, Holly Fernandez Lynch, and me – to conduct an analysis of potential legal concerns related to these technologies, as well as other health and performance evaluations of NFL players, in our recent article, Evaluating NFL Player Health and Performance: Legal and Ethical Issues (165 U. Penn. L. Rev. 227, Jan. 2017).*  Specifically, we focused on the application of two federal employment antidiscrimination statutes: the Americans with Disabilities Act (ADA) and the Genetic Information Nondiscrimination Act (GINA) to the NFL workplace. Continue reading

Bill of Health Blog Symposium: How Patients Are Creating the Future of Medicine

We are pleased to host this symposium featuring commentary from participants in the University of Minnesota’s Consortium on Law and Values in Health, Environment & the Life Sciences event, “How Patients Are Creating Medicine’s Future: From Citizen Science to Precision Medicine.”  Below, Susan M. Wolf tees up the issues.  All posts in the series will be available here.

How Patients Are Creating the Future of Medicine: Roundtable at the University of Minnesota

By Susan M. Wolf, JD (Chair, Consortium on Law and Values in Health, Environment & the Life Sciences; McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine, University of Minnesota)

Citizen science, the use of mobile phones and other wearables in research, patient-created medical inventions, and the major role of participant-patients in the “All of Us” Precision Medicine Initiative are just a few of the indicators that a major shift in biomedical research and innovation is under way. Increasingly, patients, families, and the public are in the driver’s seat, setting research priorities and the terms on which their data and biospecimens can be used. Pioneers such as Sharon Terry at Genetic Alliance and Matthew Might at NGLY1.org have been forging a pathway to genuine partnership linking patients and researchers. But the legal and ethical questions remain daunting. How should this research be overseen? Should the same rules apply as in more conventional, academically driven research? What limits should apply to parental use of unvalidated treatments on children affected by severe, rare disease? And should online patient communities be able to set their own rules for research?

In December 2016, the University of Minnesota’s Consortium on Law and Values in Health, Environment & the Life Sciences convened four thinkers with diverse academic and professional backgrounds to analyze these trends. This event, “How Patients Are Creating Medicine’s Future: From Citizen Science to Precision Medicine” was part of the Consortium’s Deinard Memorial Lecture Series on Law & Medicine, co-sponsored by the University’s Center for Bioethics and Joint Degree Program in Law, Science & Technology, with support from the Deinard family and law firm of Stinson Leonard Street. To see a video of the event, visit http://z.umn.edu/patientledvideo.

The four speakers offered diverse and provocative perspectives, each of which is highlighted in this series.

Citizen-Led Bioethics for the Age of Citizen Science: CRexit, BioEXIT, and Popular Bioethics Uprisings

By Barbara J. Evans, MS, PhD, JD, LLM (Alumnae College Professor of Law; Director, Center on Biotechnology & Law, University of Houston)

This post is part of a series on how patients are creating the future of medicine.  The introduction to the series is available here, and all posts in the series are available here.

The citizen science movement goes beyond merely letting people dabble in science projects. It involves giving regular people a voice in how science should be done. And citizen science calls for a new, citizen-led bioethics.

Twentieth-century bioethics was a top-down affair. Ethics experts and regulators set privacy and ethical standards to protect research subjects, who were portrayed as autonomous but too vulnerable and disorganized to protect themselves. The Common Rule’s informed consent right is basically an exit right: people can walk away from research if they dislike the study objectives or are uncomfortable with the privacy protections experts think are good for them. An exit right is not the same thing as having a voice with which to negotiate the purposes, terms, and conditions of research.

Continue reading

Participant Power

By Jason Bobe, MSc (Associate Professor, Icahn School of Medicine at Mount Sinai; Executive Director, Open Humans Foundation; Co-founder, DIYbio.org)

This post is part of a series on how patients are creating the future of medicine.  The introduction to the series is available here, and all posts in the series are available here. Jason Bobe will be participating in an NIH videocast on return of genetic results in the All of Us research program starting at 8AM on Monday, March 6, 2017.  You can tune in here

People across the world regularly rank health and health care near the top of what they value. Yet most people don’t volunteer to participate in organized health research. This is the “participation paradox.” We appear to be neglecting the very inquiry that feeds our ability to understand our bodies and to evaluate approaches to preserve, improve, or recover health from disease.

Better advertising and more effective recruitment strategies for research studies may help drive numbers up. But catchy slogans won’t drive a cultural shift toward a new future, where research participation becomes a regular part of life and organized health research is seen as a first step toward solving our health challenges, not merely the last hope for people with devastating illnesses.

Given how long it took patient-centered medicine to catch on, participant-centered research may face a long road ahead. Warner Slack was publishing about “patient power” at least as far back as 1972 (in his chapter on “Patient Power: A Patient-Oriented Value System,” in Computer Diagnosis and Diagnostic Methods, edited by John A. Jacquez, 1978). More than forty years later, great strides have been made, yet “patient power” is still a work in progress.

Continue reading

The Wearables Revolution: Personal Health Information as the Key to Precision Medicine

By Ernesto Ramirez, PhD (Director of Research & Development, Fitabase)

This post is part of a series on how patients are creating the future of medicine.  The introduction to the series is available here, and all posts in the series are available here.

Personal health data has historically been controlled by the healthcare industry. However, much has changed in the last decade. From wearable devices for tracking physical activity, to services that decode the personal microbiome, there has been an explosion of methods to collect and understand our personal health and health behavior. This explosion has created a new type of data that has the potential to transform our understanding of the deep interactions of health behaviors, exposure, and outcomes — data that is large-scale, longitudinal, real-time, and portable.

New devices, applications, and services are creating large amounts of data by providing methods for collecting information repeatedly over long periods of time. For example, I have tracked over 20 million steps since 2011 using a Fitbit activity tracker. Many of the new tools of personal health data are also connected to the Internet through Bluetooth communication with smartphones and tablets. This connectivity, while commonly used to update databases as devices sync, also provides an opportunity to view data about ourselves in real-time. Lastly, there is an increasing interest in making this data accessible through the use of application programming interfaces (APIs) that allow third parties to access and analyze data as is becomes available. Already we are seeing unique and useful tools being developed to bring consumer personal health data to bear in clinical settings, health research studies, and health improvement tools and services.

The availability of this type of personal health data is having a big impact. The examples provided by the #WeAreNotWaiting and #OpenAPS communities showcase the groundbreaking potential of portable, usable, personal data. It is transforming the quality of life for individuals living with type 1 diabetes. Through access to data from continuous glucose monitors and wireless control of insulin pumps, over 100 individuals have implemented their own version of an artificial pancreas. These pioneering individuals are at the forefront of a revolution using personal health data to take charge of care and customize treatment decisions.

Personal health data will play a major role in the future of precision medicine, healthcare, and health research. Sensors will continue to improve. New data streams will become available. More analytical tools will surface. There will be more support for portable and sharable data. The availability of large-scale, longitudinal, and real-time personal health data will improve not only the ability of individuals to understand their own health, but when pooled, may produce new insights about what works, for what people, under what conditions.

Patient-Driven Medical Innovations: Building a Precision Medicine Supply Chain for All

Kingshuk K. Sinha, PhD (Department Chair and Mosaic Company-Jim Prokopanko Professor of Corporate Responsibility Supply Chain and Operations Department, Carlson School of Management, University of Minnesota)

This post is part of a series on how patients are creating the future of medicine.  The introduction to the series is available here, and all posts in the series are available here.

While the promise and potential of precision medicine are clear, delivering on that promise and making precision medicine accessible to all patients will require clinical adoption and a reliable and responsible supply chain. We already know this is a big problem in pharmacogenomics technology; the science is advancing rapidly, but clinical adoption is lagging. While Big Data can be a powerful tool for health care – whether it be an individual’s whole genome or an online aggregation of information from many patients with a particular disease – building implementation pathways to analyze and use the data to support clinical decision making is crucial. All of the data in the world doesn’t mean much if we can’t ensure that the development of precision medicine is linked with the efficient, safe, and equitable delivery of precision medicine.

Effective implementation means addressing the stark realities of health disparities. Leveraging citizen science to develop and deliver precision medicine has the potential to reduce those disparities. Citizen science complements more traditional investigator-driven scientific research and engages amateur and non-professional scientists, including patients, patients’ families, and communities across socio-economic strata as well as country boundaries.

Continue reading

Henrietta Lacks and the Great Healthdata Giveaway

Part Seven of Seven-Part Blog Series by Guest Blogger Patrick Taylor

A suggestion runs through the debate on the NPRM to amend the Common Rule that the proposed changes are a tribute to Henrietta Lacks, a necessity so her story is not repeated.

That story was told in a the national bestseller  The Immortal Life of Henrietta Lacks, a moving biography of the young woman whose  aggressive tumor was the source of the ubiquitous HeLa cells (probably without her consent, certainly without her awareness of what followed); her family;  the  cells’  (and her) dehumanization into a research tool to be exploited unthinkingly; and the poverty, disconnection, racism,  lack of health care and lack of concern for her family. Society and scientists received a bonanza, and did nothing for her family in return.  The book criticizes phony consent, and advocates sharing  cell line proceeds with donors and their families. It rekindled discussion of consent and racist legacies, while urging that injustice required social change.

Continue reading