The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists....

The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...) are embracing this populist rhetoric to encourage wider public participation. We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance. (shrink)

À l’été 2014, les mouvements Black Lives Matter et Free Palestine convergent. C’est l’occasion pour la théoricienne transdisciplinaire Jasbir K. Puar de réfléchir à la dévalidation forcée des populations racialisées. S’appuyant sur les théories handies décoloniales et crip-of-color, Puar considère la manière dont les corps non-blancs sont exclus de la reconnaissance du handicap. Alors que les meurtres policiers de personnes noires aux États-Unis touchent une large majorité de personnes noires handicapées, et alors que la destruction systématique des hôpitaux palestiniens par (...) Israël apparaît comme une stratégie d’affaiblissement de la population, Puar développe les outils théoriques intersectionnels pour nommer « le droit de mutiler » exercés par les États modernes/coloniaux contre les populations qu’ils subjuguent. Appelant à ne pas se satisfaire des rhétoriques de l’empuissancement et de la fierté handie, ce texte (qui sert d’avant-propos au livre éponyme, Le droit de mutiler. Débilité, capacité, handicap ) jette les fondations théoriques d’une coalition antivalidiste/antiraciste contre les brutalités policières et néocoloniales. (shrink)

Le néologisme dévalider est formé sur le radical « valide » (compris au sens de : validé par le validisme) auquel s’ajoute le préfixe privatif « dé- » (compris au sens de : défaire, déconstruire, détruire). Il reprend et littéralise l’anglais disabled, qui se traduit habituellement en « personne handicapée ». À côté de cette signification ordinaire, les luttes handies se sont emparées du verbe dévalider pour signifier deux aspects contradictoires mais complémentaires. D’un côté, les mondes dévalidés sont les mondes (...) que prépare la lutte anti-validiste, c’est-à-dire une société sans validisme (dé-validé en ce sens qu’il n’est plus rapporté à la norme valide). De l’autre, les mondes dévalidés désignent les mondes que prépare le capitalisme extractiviste, c’est-à-dire des mondes où plus personne ne peut être dit valide (dévalidé en ce sens que tout le monde, bien qu’à des degrés différents, y voit ses capacités déplacées, par exemple en raison de la toxicité de l’atmosphère). Les mouvements pour la justice handie se situent au point de tension entre d’un côté une lutte pour une dévalidation libératrice (contre le validisme qui rend le handicap invivable) et de l’autre une lutte contre la dévalidation forcée (contre l’extractivisme qui exploite la débilitation des vies). Ce texte sert d’introduction à la majeure « Justice handie », qui rassemble des écrits universitaires, militants et poétiques écrits depuis et avec les luttes anti-validistes. (shrink)

Une nouvelle écrite pour l’anthologie Octavia’s Brood: Science Fiction Stories from Social Justice Movements [enfants d’Octavia: des histoires SF tirées des mouvements de justice sociale], éditée par adrienne maree brown et Walidah Imarisha. L’histoire parle d’un futur dans lequel toutes les personnes handicapées (appelées I. P. ou ImParfait·es) ont été envoyées sur une autre planète où, débarrassées des soldats envoyés pour les surveiller, ielles se sont créé une vie faite d’entraide. Cette vie est menacée par les Parfait·es, qui s’apprêtent à (...) revenir prendre le contrôle et créer une nouvelle dystopie pour eux. (shrink)

Bruce L. Kinzer offers a rich examination of personal and political themes in the life of John Stuart Mill, one of the most influential liberal thinkers of the nineteenth century. By investigating young Mill's formative period and his relations with his father, Harriet Taylor, and Thomas Carlyle, Kinzer casts light on the challenges Mill faced in understanding himself and what he wished to become. Kinzer's political explorations probe issues central to the appreciation of Mill as an engaged political thinker (...) and actor and offers an insightful portrait of a complex and towering figure."--BOOK JACKET. (shrink)

This essay examines Harriet Jacobs’s Incidents in the Life of a Slave Girl (1861) in light of new archival findings on the medical practices of Dr. James Norcom (Dr. Flint in the narrative). While critics have sharply defined the feminist politics of Jacobs’s sexual victimization and resistance, they have overlooked her medical experience in slavery and her participation in reform after escape. I argue that Jacobs uses the rhetoric of a woman-led health reform movement underway during the 1850s to (...) persuade her readers to end slavery. This essay reconstructs both contexts, revealing that Jacobs links enslaved women’s physical and sexual vulnerability with her female readers’ fears of male doctors’ threats to modesty and of their standard bleed-and-purge treatments. Jacobs illustrates that slavery damages women’s health as much as heroic medicine, and thus merits the political activism of her readers. Specifically, Jacobs dramatizes her conflicts with the rapacious physician-master at moments that are crucial to women’s health: marriage, pregnancy, childbirth, and motherhood. Ultimately, this essay advances a new understanding of the role of health reform in social change: it galvanized other movements such as women’s rights and abolition, particularly around issues of bodily autonomy for women and African Americans. (shrink)

George Herbert Mead, one of America’s most important and influential philosophers, a founder of pragmatism, social psychology, and symbolic interactionism, was also a keen observer of American culture and early modernism. In the period from the 1870s to 1895, Henry Northrup Castle maintained a correspondence with family members and with Mead—his best friend at Oberlin College and brother-in-law—that reveals many of the intellectual, economic, and cultural forces that shaped American thought in that complex era. Close friends of John Dewey, Jane (...) Addams, and other leading Chicago Progressives, the author of these often intimate letters comments frankly on pivotal events affecting higher education, developments at Oberlin College, Hawaii, progressivism, and the general angst that many young intellectuals were experiencing in early modern America. The letters, drawn from the Mead-Castle collection at the University of Chicago, were collected and edited by Mead after the tragic death of Henry Castle in a shipping accident in the North Sea. Working with his wife Helen Castle, he privately published fifty copies of the letters to record an important relationship and as an intellectual history of two progressive thinkers at the end of the nineteenth century. American historians, such as Robert Crunden and Gary Cook, have noted the importance of the letters to historians of the late nineteenth century. The letters are made available here using the basic Mead text of 1902. Additional insights into the connection between Mead, John Dewey, Henry and Harriet Castle, and Hawaii’s progressive kindergarten system are provided by the foundation’s executive director Alfred L. Castle. Marvin Krislov, president of Oberlin College, has added additional comments on the importance of the letters to understanding the intellectual relationship that flourished at Oberlin College. Published with the support of the Samuel N. and Mary Castle Foundation. (shrink)

According to the Argument for Autonomous Mental Disorder, mental disorder can occur in the absence of brain disorder, just as software problems can occur in the absence of hardware problems in a computer. This article argues that the AAMD is unsound. I begin by introducing the “natural dysfunction analysis” of disorder, before outlining the AAMD. I then analyze the necessary conditions for realizer autonomous dysfunction. Building on this, I show that software functions disassociate from hardware functions in a way that (...) mental functions do not disassociate from brain functions. It follows that mental disorders are brain disorders necessarily. (shrink)

Justin Garson has recently advanced a Generalised Selected Effects Theory of biological proper function. According to Garson, his theory spells trouble for the Dysfunction Account of Disorder. This paper argues that Garson’s critique of the Dysfunction Account from the Generalised Theory fails, and that we should reject the Generalised Theory outright. I first show that the Generalised Theory does not, as Garson asserts, imply that neurally selected disorders are not dysfunctional. Rather, it implies that they are both functional and dysfunctional. (...) I argue on this basis that the Generalised Theory yields conflicting functional norms, and we that should reject it outright on these grounds. (shrink)

This paper asks when a natural disease kind is truly 'reactive' and when it is merely associated with a corresponding social kind. I begin with a permissive account of real kinds and their structure, distinguishing natural kinds, indifferent kinds and reactive kinds as varieties of real kind characterised by super-explanatory properties. I then situate disease kinds within this framework, arguing that many disease kinds prima facie are both natural and reactive. I proceed to distinguish ‘simple dependence’, ‘secondary dependence’ and ‘essential (...) dependence’ between a natural kind and its classification, and argue that a natural kind is only really reactive, in an important sense, under conditions of essential dependence. On this basis, I offer a principled hypothesis for why psychiatric kinds tend to be more metaphysically unstable than paradigm somatic disease kinds. (shrink)

Background Generally, there is unanimity about the value of community engagement in health-related research. There is also a growing tendency to view genetics and genomics research (GGR) as a special category of research, the conduct of which including community engagement (CE) as needing additional caution. One of the motivations of this study was to establish how differently if at all, we should think about CE in GGR. Aim To assess the perspectives of genetics and genomics researchers in Uganda on CE (...) in GGR. Method A cross-sectional qualitative study was conducted at Makerere University and Uganda Virus Research Institute. Twenty-five individuals participated, the majority being male (sixteen). Participants included nineteen genetics and genomics researchers (researchers and research coordinators), two CE officers, three nurses and one nursing counsellor. Data were collected using in-depth interviews and analyzed in a thematic manner using NVivo version 12 Plus. Study findings Thirteen of the respondents had conducted CE in their GGR in either a geographical and disease-specific community. Some respondents said CE principles are the same and there is no need for special consideration for CE in GGR. Others gave ethical issues in GGR that require special consideration for CE in such research and these were categorized into six themes: GGR is new to communities, Difficulty in communicating GGR by the researchers, Genes are shared in communities, Cultural sensitivities against GGR, Community attitude toward GGR, Some GGR studies take long to end, and Negotiation of research benefits. Special considerations for CE when conducting GGR were suggested and categorized into seven themes: creating awareness of GGR in communities, obtaining both community acceptance and individual consent, CE team composition, involve communities in solving GGR challenges, prolong CE in some GGR, develop guidelines for CE in GGR, and legal considerations on GGR. Conclusion GGR was characterized by special issues that require special CE considerations for such research. (shrink)

Defining Mental Disorder: Jerome Wakefield and His Critics, edited by Denis Forest and Luc Faucher, is essential reading for students and researchers in philosophy of medicine whose work is informed by that of Jerome Wakefield, or the disease debate in general. If you are anything like me, this book will open the door to a new depth of understanding of the harmful dysfunction analysis (HDA) and its methodical underpinnings, and an enriched appreciation of what is at stake in defining medical (...) disorder. To those confident that they understand Wakefield’s view and the surrounding debate, thinking perhaps that they do not need a refresher, I would say: perhaps you do not understand it as well as you think. Defining Mental Disorder provides much more than an overview of previously well-trodden ground. The chapters themselves, and Wakefield’s own detailed responses, help to elucidate a number of methodological nuances and peculiarities that have rarely been covered in such depth before. I was startled to learn how philosophically complex Wakefield’s position actually is, and how shallow my own understanding of it has been. It emerges as a far more nuanced and sophisticated account than I had given it credit for, and one that deserves serious reevaluation. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Medical Tourism:Crossing Borders to Access Health CareHarriet Hutson Gray (bio) and Susan Cartier Poland (bio)Traveling abroad for one's health has a long history for the upper social classes who sought spas, mineral baths, innovative therapies, and the fair climate of the Mediterranean as destinations to improve their health. The newest trend in the first decade of the twenty-first century has the middle class traveling from developed countries to those (...) with emerging economies to avoid treatment delays, prohibitive costs for life-saving procedures, or simply high costs for elective surgery. Others leave to have access to assisted suicide in countries that have legalized it: Belgium, The Netherlands, and Switzerland. This new era of globalization in health care has arrived without the benefit of international standards, government oversight, or ethical and legal review.Howard Staab, a self-employed carpenter from North Carolina, flew to India for his medically necessary heart surgery, scheduled a side trip to the Taj Mahal, and returned home to work in North Carolina. He spent a total of less than $10,000, instead of the $200,000 required from the local hospital (I, Milstein and Smith 2006).At first blush, the outsourcing of medical care to India seems to be a particular solution for a particular problem. However, the particularity of Mr. Staab is not unique. His experience is emblematic of those patients in the United States with a medical need for major and elective procedures, but who also must bear the total cost of these procedures. These middle-class, under-insured Americans go abroad.In tandem with increasingly aggressive marketing campaigns, American hospitals and companies have begun to leverage their connections in Asia to grow the medical tourism business into a major economic force. What are the consequences of this?Several authors point to the effect on the host country's population, particularly the poor, to be pushed farther down the queue to receive adequate, affordable care. Resources are applied to the foreign trade instead of building the local [End Page 193] medical infrastructure. Another potential problem is the obligation of the home-country physician to provide follow-up care. What are the legal ramifications when the procedure was illegal to begin with? Are there opportunities for redress for medical errors?These factors may be converging into a "perfect storm" for health care in the U.S., in which the potential participation of the major insurance companies in promoting offshore care will be the tipping point in the precarious structure that represents the economic currents in health care. Third-party administrators and self-funded employers may be on the cutting edge in 2009 by providing incentives to employees to travel overseas for care.I. Economic ConsiderationsConnell, John. Medical Tourism: Sea, Sun, Sand and... Surgery. Tourism Management 27: 1093–1100, 2006.As evidence of the interest of traditional tour operators in this newer twist on the industry, the author explores medical tourism as an element of the growth of world tourism. In promoting medical tourism, he urges consideration of such issues as the privatization of health care, the foundational role of technology, and uneven access to health resources.Dunn, Philip. Medical Tourism Takes Flight. H and HN: Hospitals and Health Networks: 40–44, November 2007.Writing for U.S. health care executives, Dunn emphasizes that the reality of medical tourism competes with the local medical center for patients and their insurance dollars in a significant way. He examines the possibility that U.S. insurance plans soon may offer to pay for what is currently a cash only business and that the economic impact to the local medical center could be significant or even devastating.Frontiers of Health Services Management [Selected Articles] 24 (2), Winter 2007.In "Managing Healthcare Services in the Global Marketplace" (pp. 3–18), Bruce J. Fried and Dean M. Harris consider legal, ethical, and financial implications of the international workforce. In "Globalization of Health Care" (pp. 19–30), Lynn Schroth and Ruthy Khawahja point out that the transfer of comprehensive management expertise and intellectual property from U.S. medical centers to international sites is driving the success of collaboration between U.S. and foreign health care centers. In "Is... (shrink)

During the past four decades the governance of environmental problems – the definition of issues and their political and practical resolution – has evolved to include a wider range of stakeholders in more extensive open discussions. In the introduction to this issue of Environmental Values on ‘Environment, Policy and Participation’, we outline some features of these recent developments in participatory environmental governance, indicate some key questions that arise, and give an overview of the collection of papers in this special issue.

Utilising empirical ethics analysis, we evaluate the merits of systems proposed to increase deceased organ donation in South Africa. We conclude that SA should maintain its soft opt-in policy, and enhance it with ‘required transplant referral’ in order to maximise donor numbers within an ethically and legally acceptable framework. In SA, as is the case worldwide, the demand for donor organs far exceeds the supply thereof. Currently utilising a soft opt-in system, SA faces the challenge of how to increase donor (...) numbers in a context which is imbued with inequalities in access to healthcare, multiplicitous personal beliefs and practices, distrust of organ transplant and varying levels of education and health literacy. We argue that a hard opt-in, opt-out or mandated consent system would be problematic, and we present empirical data from Gauteng Province illustrating barriers to ethically sound practice in soft consent systems. Ultimately, we argue that in spite of some limitations, a soft opt-in system is most realistic for SA because its implementation does not require extensive public education campaigns at national level, and it does not threaten to further erode trust at a clinical level. However, to circumvent some of the clinical-level barriers identified in our empirical study, we propose a contextually sensitive option for “enabling” soft opt-in through “required transplant referral”. We argue that this system is legally defensible, enhances ethical practice and could also increase donor numbers as it has in many other countries. (shrink)

This reflection item provides an edited account of human rights lawyer Harriet Wistrich’s conversation with Manvir Grewal, Visiting Lecturer and Ph.D. student, and Harriet Samuels, Reader in Law at the University of Westminster. It summarises the exchange which focused on Harriet Wistrich’s career trajectory and the many public interest law cases that she has brought on behalf her clients, mainly women, in both domestic and international forums. It also includes a condensed version of the question and answer (...) session with the audience. Questions included the broader issues around domestic violence, rape, coercive control, sex work and the nature of feminism. (shrink)

Climate science denial is serious. It facilitates political procrastination and brings us ever closer to a world beset by growing food insecurity, heatwaves, floods, storms, fires and extensive los...

The archive can take many forms but all are marked by a connective sequence: archive, memory, the past, narrative. The author explores this sequence through an account of her engagement with four different types of archive, constructing a phenomenology of the archive which highlights the promises and seductions offered to the researcher. Postmodern questioning may throw in doubt older conceptions, whereby the archive is used to legitimate knowledge claims about the past of a nomological nature. However, in a context where (...) intellectuals become interpreters rather than legislators, the role of the archive as repository of inert meanings is strengthened rather than weakened; using the archive helps us to understand the dialectical nature of the relationship between past and present and our own positioning within this. (shrink)

All authors in this symposium use a food regime perspective to ask questions about the present which—as these articles demonstrate—have several possible answers. History suggests a time perspective of 25–40 year cycles so far—a food regime 1870–1914, an experimental and chaotic era 1914–1947, and a food regime 1947–1973. It has been less than 40 years since 1973, when food regime analysts agree that a contested and experimental period began. There is no consensus on whether it has already ended or how (...) it might issue into a new food regime. The conversation is more fruitful than the conclusions. I intend these comments as an invitation to join in. (shrink)

This paper presents four arguments in favour of respecting Ulysses Contracts in the case of individuals who suffer with severe chronic episodic mental illnesses, and who have experienced spiralling and relapse before. First, competence comes in degrees. As such, even if a person meets the usual standard for competence at the point when they wish to refuse treatment, they may still be less competent than they were when they signed the Ulysses Contract. As such, even if competent at time 1 (...) and time 2, there can still be a disparity between the levels of competence at each time. Second, Ulysses Contracts are important to protect people’s most meaningful concerns. Third, on the approach defended, the restrictions to people’s liberty would be temporary, and would be consistent with soft paternalism, rather than hard paternalism: the contracts would be designed in such a way that individuals would be free to change their minds, and to change or cancel their Ulysses Contracts later. Finally, even if one rejects the equivalence thesis, this is still consistent with the claim that, in particular cases, it can be as wrong to allow a harm as to do a harm. Nevertheless, controversies remain. This paper also highlights several safeguards to minimise risks. Ultimately, we argue that people who are vulnerable to spiralling deserve a way to protect their autonomy as far as possible, using Ulysses Contracts when necessary. (shrink)

The triumph was the most prestigious accolade a politician and general could receive in republican Rome. After a brief review of the role played by the triumph in republican political culture, this article analyzes the severe limits Augustus placed on triumphal parades after 19 BC, which then became very rare celebrations. It is argued that Augustus aimed at and almost succeeded in eliminating traditional triumphal celebrations completely during his lifetime, by using a combination of refusing them for himself and his (...) relatives and of rewarding his legates who fought under his auspices with ornamenta triumphalia and an honorific statue in the Forum of Augustus. Subsequently, the elimination of the triumph would have been one natural result of the limit placed on further imperial expansion recommended by Augustus in his will, a policy his successors chose not to follow. Tiberius, however, was unwilling to conform to this new order and retired from public life to Rhodes the year after celebrating a triumph in 7 BC, the first such celebration since 19 BC. Tiberius' two triumphs and the senate's repeated offers of further triumphs to Augustus himself represented a different vision of the role triumphal celebration should take in a restored res publica and an ongoing challenge to the princeps. (shrink)

To mark International Women’s Day the Research Group for Law, Gender and Sexuality at Westminster Law School held an evening conversation on 10 March 2016 on Women and Asylum. Speakers working in different areas of the asylum system shared their insights and experiences with an audience of staff, students, activists and other visitors. Harriet Samuels chaired the conversation and the speakers were Princess Chine Onyeukwu, Debora Singer, Priya Solanki and Zoe Harper. This article is an edited extract from the (...) transcript of the presentations and wide-ranging discussion, including the question and answer session. The discussion focused on the different steps in the refugee determination process and considered, in particular, the gendering of credibility and how women’s perceived lack of credibility has a significant impact on determinations and processes. (shrink)

The prior issue of Krisis (42:1) published Critical Naturalism: A Manifesto, with the aim to instigate a debate of the issues raised in this manifesto – the necessary re-thinking of the role (and the concept) of nature in critical theory in relation to questions of ecology, health, and inequality. Since Krisis considers itself a place for philosophical debates that take contemporary struggles as starting point, it issued an open call and solicited responses to the manifesto. This is one of the (...) sixteen selected responses, which augment, specify, or question the assumptions and arguments of the manifesto. (shrink)