[Participant-funded clinical trials on rare diseases]. / Ensayos clínicos en enfermedades raras financiados por los participantes.

The development of medicines for certain rare diseases can be frustrated by lack of funding. In certain cases the patients themselves, or their relatives, occasionally fund the clinical trial in which they will be treated with the investigational medicine. There are 3models of self-funded research: 2of them, "pay to try" and "pay to participate", have already been put into practice. The third, the "plutocratic" proposal, which has been recently put forward is still a theoretical model. In this work the scientific, social and ethical benefits and risks of the 2clinical research models, "pay to participate" and the "plutocratic" proposal, are reviewed. Patient-funded clinical trials are frequently performed through crowdfunding. The most controversial aspects of this funding modality are also addressed in this article from several perspectives. Finally, a future scenario that would allow the launching of self-funded clinical trials in Spain by the "plutocratic" proposal is proposed.

Crowdsourced Research: Vulnerability, Autonomy, and Exploitation.

The use of crowd workers as research participants is fast becoming commonplace in social, behavioral, and educational research, and institutional review boards are encountering more and more research protocols concerning these workers. In what sense are crowd workers vulnerable as research participants, and what should ethics reviewers look out for in evaluating a crowdsourced research protocol? Using the popular crowd-working platform Amazon Mechanical Turk as the key example, this article aims to provide a starting point for a heuristic for ethical evaluation. The first part considers two reputed threats to crowd workers' autonomy-undue inducements and dependent relationships-and finds that autonomy-focused arguments about these factors are inconclusive or inapplicable. The second part proposes applying Alan Wertheimer's analysis of exploitation instead to frame the ethics of crowdsourced research. The article then provides some concrete suggestions for ethical reviewers based on the exploitation framework.

Medical Crowdfunding for Unproven Medical Treatments: Should Gofundme Become a Gatekeeper?

Medical crowdfunding has raised many ethical concerns, among them that it may undermine privacy, widen health inequities, and commodify health care. One motivation for medical crowdfunding has received particular attention among ethicists. Recent studies have shown that many individuals are using crowdfunding to finance access to scientifically unsupported medical treatments. Recently, GoFundMe prohibited campaigns for antivaccination groups on the grounds that they "promote misinformation about vaccines" and for treatment at a German clinic offering unproven cancer treatments due to "the need to make sure people are equipped to make well-informed decisions." GoFundMe has not taken any additional actions to regulate the much larger presence of campaigns seeking to fund unproven medical interventions on the platform. In this article, we make the ethical case for intervention by GoFundMe and other crowdfunding platforms.

Medical crowdfunding in China: empirics and ethics.

Medical crowdfunding has become a popular choice worldwide for people with unaffordable health needs. In low-income and middle-income countries with limited social welfare arrangements and a high incidence of catastrophic health spending, the market for medical crowdfunding is booming. However, relevant research was conducted exclusively in North America and Europe; little is known about medical crowdfunding activities inother contexts. As a first step towards filling this knowledge gap, this study depicts the realities of medical crowdfunding in a middle-income country China through empirical investigation and ethical analysis. We examine 100 randomly selected medical campaigns from a major Chinese crowdfunding platform and analyse the relevance of the previously identified ethical concerns to the Chinese context. The empirical findings show that Chinese campaigns have low and uneven success rates, require legally the participation of charitable organisations and focus on financial distress and family values in appealing for donations. In addition, the ethical analysis suggests that medical crowdfunding in China shares several ethical concerns raised in developed countries such as the veracity of claims and privacy violation. More importantly, our research reveals the inadequacy of current evidence and the lack of indicators to evaluate ethical issues in practice. Additional research is needed to better understand this fundraising practice across different social and cultural contexts.

Citizen Science and Gamification.

According to the mainstream conception of research involving human participants, researchers have been trained scientists acting within institutions and have been the individuals doing the studying, while participants, who are nonscientist members of the public, have been the individuals being studied. The relationship between the public and scientists is evolving, however, giving rise to several new concepts, including crowdsourcing and citizen science. In addition, the practice of gamification has been applied to research protocols. The role of gamified, crowdsourced citizen scientist is new in the domain of scientific research and does not fit into the existing taxonomy of researchers and participants. We delineate and explicate this role and show that, while traditional roles are governed by well-established norms and regulations, individuals engaged in gamified, crowdsourced citizen science-gamers-fall through the cracks of research protections and regulations. We consider the issues this raises, including exploitation and the absence of responsibility and accountability. Finally, we offer suggestions for how the current lack of appropriate norms may be rectified.

Medical crowdfunding and the virtuous donor.

Patients and families are increasingly turning to crowdfunding to help them cover the cost of medical care. The ethics of crowdfunding has garnered some attention in the bioethical literature. In this paper I examine an ethical aspect of medical crowdfunding (MCF) that has received limited attention: the role of donors. I defend a virtue ethical approach to analyzing the role of donors in MCF. Vicious donation, where donors do not exercise the relevant virtues, can compound some of the ethical risks associated with MCF, as seen in the several recent, high-profile cases. My primary contention in this paper is that encouraging donors to think about how donating to a particular campaign would measure against the virtues I outline could help to discourage acts of ethically problematic donation to MCF campaigns.

Legal and ethical issues surrounding the use of crowdsourcing among healthcare providers.

As the pace of medical discovery widens the knowledge-to-practice gap, technologies that enable peer-to-peer crowdsourcing have become increasingly common. Crowdsourcing has the potential to help medical providers collaborate to solve patient-specific problems in real time. We recently conducted the first trial of a mobile, medical crowdsourcing application among healthcare providers in a university hospital setting. In addition to acknowledging the benefits, our participants also raised concerns regarding the potential negative consequences of this emerging technology. In this commentary, we consider the legal and ethical implications of the major findings identified in our previous trial including compliance with the Health Insurance Portability and Accountability Act, patient protections, healthcare provider liability, data collection, data retention, distracted doctoring, and multi-directional anonymous posting. We believe the commentary and recommendations raised here will provide a frame of reference for individual providers, provider groups, and institutions to explore the salient legal and ethical issues before they implement these systems into their workflow.

Democratización de la comunicación, aprendizaje mutuo y acción política colectiva: reflexiones desde Guatemala / Democratization of communication, mutual learning and collective action: Thoughts from Guatemala / Democratització de la comunicació, aprenentatge mutu i acció política col·lectiva: reflexions des de Guatemala

Cuidar del planeta es una responsabilidad común, para ello, el diálogo intercultural es ahora más necesario que nunca. Este artículo pretende analizar herramientas desarrolladas en Guatemala que promueven la democratización de la comunicación, el aprendizaje mutuo y la acción política colectiva para garantizar los derechos de los Pueblos Indígenas. Este análisis tiene el fin de brindar una oportunidad de aprender de voces ausentes en nuestros medios de comunicación, fomentar la cooperación y promover la crítica a las políticas de nuestros países que fomentan un sistema desigual e injusto a escala local y global

Caring for the planet is a shared responsibility. Thus, intercultural dialogue is now more necessary than ever. This article aims to analyse some tools developed in Guatemala that promote democratization of communication, mutual learning and collective action in order to guarantee the rights of Indigenous Peoples. These examples are presented here with the goal to encourage us to learn from absent voices in our media and to be more critical with respect to unequal and unfair policies in our countries, whether in a global or a local context

Cuidar del planeta és una responsabilitat comuna, per això, el diàleg intercultural és ara més necessari que mai. Aquest article pretén analitzar eines desenvolupades a Guatemala que promouen la democratització de la comunicació, l'aprenentatge mutu i l'acció política col·lectiva per a garantir els drets dels Pobles Indígenes. Aquest anàlisi vol brindar l'oportunitat d'aprendre de veus absents als nostres mitjans de comunicació, fomentar la cooperació i promoure la crítica a les polítiques dels nostres països que fomenten un sistema desigual i injust a escala local i global

Ethical implications of medical crowdfunding: the case of Charlie Gard.

Patients are increasingly turning to medical crowdfunding as a way to cover their healthcare costs. In the case of Charlie Gard, an infant born with encephalomyopathic mitochondrial DNA depletion syndrome, crowdfunding was used to finance experimental nucleoside therapy. Although this treatment was not provided in the end, we will argue that the success of the Gard family's crowdfunding campaign reveals a number of potential ethical concerns. First, this case shows that crowdfunding can change the way in which communal healthcare resources are allocated. Second, within the UK's National Health Service, healthcare is ostensibly not a market resource; thus, permitting crowdfunding introduces market norms that could commodify healthcare. Third, pressures inherent to receiving funds from external parties may threaten the ability of patients-cum-recipients to voluntarily consent to treatment. We conclude that while crowdfunding itself is not unethical, its use can have unforeseen consequences that may influence conceptions of healthcare and how it is delivered.

Ethical Concerns of and Risk Mitigation Strategies for Crowdsourcing Contests and Innovation Challenges: Scoping Review.

BACKGROUND: Crowdsourcing contests (also called innovation challenges, innovation contests, and inducement prize contests) can be used to solicit multisectoral feedback on health programs and design public health campaigns. They consist of organizing a steering committee, soliciting contributions, engaging the community, judging contributions, recognizing a subset of contributors, and sharing with the community. OBJECTIVE: This scoping review describes crowdsourcing contests by stage, examines ethical problems at each stage, and proposes potential ways of mitigating risk. METHODS: Our analysis was anchored in the specific example of a crowdsourcing contest that our team organized to solicit videos promoting condom use in China. The purpose of this contest was to create compelling 1-min videos to promote condom use. We used a scoping review to examine the existing ethical literature on crowdsourcing to help identify and frame ethical concerns at each stage. RESULTS: Crowdsourcing has a group of individuals solve a problem and then share the solution with the public. Crowdsourcing contests provide an opportunity for community engagement at each stage: organizing, soliciting, promoting, judging, recognizing, and sharing. Crowdsourcing poses several ethical concerns: organizing-potential for excluding community voices; soliciting-potential for overly narrow participation; promoting-potential for divulging confidential information; judging-potential for biased evaluation; recognizing-potential for insufficient recognition of the finalist; and sharing-potential for the solution to not be implemented or widely disseminated. CONCLUSIONS: Crowdsourcing contests can be effective and engaging public health tools but also introduce potential ethical problems. We present methods for the responsible conduct of crowdsourcing contests.

Appealing to the crowd: ethical justifications in Canadian medical crowdfunding campaigns.

Medical crowdfunding is growing in terms of the number of active campaigns, amount of funding raised and public visibility. Little is known about how campaigners appeal to potential donors outside of anecdotal evidence collected in news reports on specific medical crowdfunding campaigns. This paper offers a first step towards addressing this knowledge gap by examining medical crowdfunding campaigns for Canadian recipients. Using 80 medical crowdfunding campaigns for Canadian recipients, we analyse how Canadians justify to others that they ought to contribute to funding their health needs. We find the justifications campaigners tend to fall into three themes: personal connections, depth of need and giving back. We further discuss how these appeals can understood in terms of ethical justifications for giving and how these justifications should be assessed in light of the academic literature on ethical concerns raised by medical crowdfunding.

Are all "research fields" equal? Rethinking practice for the use of data from crowdsourcing market places.

New technologies like large-scale social media sites (e.g., Facebook and Twitter) and crowdsourcing services (e.g., Amazon Mechanical Turk, Crowdflower, Clickworker) are impacting social science research and providing many new and interesting avenues for research. The use of these new technologies for research has not been without challenges, and a recently published psychological study on Facebook has led to a widespread discussion of the ethics of conducting large-scale experiments online. Surprisingly little has been said about the ethics of conducting research using commercial crowdsourcing marketplaces. In this article, I focus on the question of which ethical questions are raised by data collection with crowdsourcing tools. I briefly draw on the implications of Internet research more generally, and then focus on the specific challenges that research with crowdsourcing tools faces. I identify fair pay and the related issue of respect for autonomy, as well as problems with the power dynamic between researcher and participant, which has implications for withdrawal without prejudice, as the major ethical challenges of crowdsourced data. Furthermore, I wish to draw attention to how we can develop a "best practice" for researchers using crowdsourcing tools.

Crowdfunding FOR MEDICAL CARE: Ethical Issues in an Emerging Health Care Funding Practice.

Crowdfunding websites allow users to post a public appeal for funding for a range of activities, including adoption, travel, research, participation in sports, and many others. One common form of crowdfunding is for expenses related to medical care. Medical crowdfunding appeals serve as a means of addressing gaps in medical and employment insurance, both in countries without universal health insurance, like the United States, and countries with universal coverage limited to essential medical needs, like Canada. For example, as of 2012, the website Gofundme had been used to raise a total of 8.8 million dollars (U.S.) for seventy-six hundred campaigns, the majority of which were health related. This money can make an important difference in the lives of crowdfunding users, as the costs of unexpected or uninsured medical needs can be staggering. In this article, I offer an overview of the benefits of medical crowdfunding websites and the ethical concerns they raise. I argue that medical crowdfunding is a symptom and cause of, rather than a solution to, health system injustices and that policy-makers should work to address the injustices motivating the use of crowdfunding sites for essential medical services. Despite the sites' ethical problems, individual users and donors need not refrain from using them, but they bear a political responsibility to address the inequities encouraged by these sites. I conclude by suggesting some responses to these concerns and future directions for research.

Lay Crowd-Sourced Expertise (LCE) and Its Influence on the New Role of Patients: Ethical and Societal Issues.

The emergence of social media on the Internet allows patients to discuss about their chronic diseases within online communities sharing common interests. This allows patients to gather other patients' experience, and gain new knowledge that is usually not shared by healthcare professionals. In this context, further studies are required on the actual impact of the use of social networks on the quality of life of patients participating in these online communities, focusing on the evolving role and impact of Lay Crowdsourced expertise (LCE) in improving disease management and control. We present a study on a large number of posts from social networks of different online communities. This study allowed us to choose four pathologies, with distinctive characteristics relevant for our future analysis, and to define the themes that will be covered in future work by online questionnaires. The analysis of responses from patients, who volunteer to participate, will help us in exploring how interactions between patients, on these online communities, may help them to gain useful information for managing their conditions and improving their quality of life. Furthermore, we will identify new ethical issues that arise in the sharing of health data.