Visual content captures attention, is easy to understand, and is more likely to be remembered. However, it is not limited to conveying informative content; it can also be used to propagate hate. While existing research has predominantly focused on textual hate speech, this study aims to address a research gap by analyzing the characteristics of visual hate, including its channels, intensity, sources, and targets, through a standardized manual content analysis. The hate images were collected through the citizen science (...) approach of data donation. Findings highlight that transgender individuals and migrants are the primary targets of visual hate. It reveals a presence of hate images not only on communication platforms but also in various intermediaries and journalistic media. Half of these images use factual or humorous methods to discriminate against individuals or groups, while an equal number adopt a highly aggressive tone. The study suggests governance measures to combat this issue effectively. (shrink)

uBiome offers a gut bacteria sequencing service to consumers to entice data donation. It aims to establish a genomic repository for microbiomics. In 2013, some bloggers worried that uBiome operations had not received any Institutional Review Board ethics approval. uBiome co-founders Richman and Apte replied by effectively arguing that crony research agencies hamper innovation by requiring cumbersome for-fee IRBs to so-called “citizen science” projects. The debate soon ascended from ethics to appropriate institutional design for research and innovation. (...) I reconstruct the ethical issues underpinning the uBiome-IRB debate and situate them in the emerging context of entrepreneurial science relying on crowdsourcing. This paper contributes to the dialogue between social scientists and bioethicists promoted in this volume by offering an analysis of a case study that requires attention to the organizational and economic context and lends itself to collaboration across disciplines. (shrink)

Much of today’s geopolitical conflict is taking place online, carried out in significant measure by volunteers, even as governments seek to emphasize information technology cooperation. Computational social scientists have discovered multiple online environments in which to collect relevant statistical data, including Wikipedia pageviews, archives of government research grant abstracts, and behavior in massively multiplayer online war games. Three very different examples of the dynamics of collaboration and conflict provide alternative perspectives: (1) the Pirate Parties that seem to have been (...) an overly ambitious attempt to transform democracy in the Information Age, (2) citizen science that had some success attracting volunteers to donate labor to academic research projects, but generally avoided controversial research projects in areas such as human conflict, and (3) a genre of online role-playing games that emphasized spontaneous organization of volunteer armies to develop skills and resources for victory. Without claiming to offer strict rules for success, this article considers the organizational structures and practical methodologies that might be adapted for achievement of goals by ethical social movements. (shrink)

In this commentary, I reflect on the differences between two independent citizen approaches to monitoring radiological contamination, one in Belarus after the 1986 Chernobyl nuclear accident and the other in Japan following the 2011 Fukushima Daiichi accident. I examine these approaches from the perspective of their contribution to making radiological contamination more publicly visible. The analysis is grounded in my earlier work, where I examined how we have come to know what we know about post–Chernobyl contamination and its effects (...) in Belarus, a former Soviet republic most heavily affected by the fallout. As I described in this study, much of what we know about the consequences of Chernobyl is based on the work of the Belarusian nonprofit Institute of Radiation Safety, “Belrad.” I compare Belrad’s approach to radiological monitoring with the work of the volunteer network Safecast, arguably one of the best-known citizen science projects in the world, which is working to monitor the scope of the post–Fukushima contamination. Through this comparison of approaches, I raise broader questions about a form of sensing practices—data-related practices of citizen science that make environmental hazards publicly in/visible. (shrink)

Dominant forms of contemporary big-data based digital citizen science do not question the institutional divide between qualified experts and lay-persons. In our paper, we turn to the historical case of a large-scale amateur project on biogeographical birdwatching in the late nineteenth and early twentieth century to show that networked amateur research can operate in a more autonomous mode. This mode depends on certain cultural values, the constitution of specific knowledge objects, and the design of self-governed infrastructures. We (...) conclude by arguing that the contemporary quest for autonomous citizen science is part of a broader discourse on the autonomy of scientific research in general. Just as the actors in our historical case positioned themselves against the elitism of gentlemen scientists, avant-garde groups of the twenty first century like biohackers and civic tech enthusiasts position themselves against the system of professional science—while “digital citizen science” remains to oscillate between claims for autonomy and realities of heteronomy, constantly reaffirming the classic lay-expert divide. (shrink)

As citizen science expands, questions arise regarding the applicability of norms and policies created in the context of conventional science. This article focuses on data sharing in the conduct of health-related citizen science, asking whether citizen scientists have obligations to share data and publish findings on par with the obligations of professional scientists. We conclude that there are good reasons for supporting citizen scientists in sharing data and publishing findings, and (...) we applaud recent efforts to facilitate data sharing. At the same time, we believe it is problematic to treat data sharing and publication as ethical requirements for citizen scientists, especially where there is the potential for burden and harm without compensating benefit. (shrink)

This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, similar to the way in which they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute at the University of Oxford. Ten arguments are provided to support the need to foster posthumous medical (...) data donation. Two major risks are also identified—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to secure informed consent is rejected, and instead a voluntary and participatory approach to using personal medical data should be followed. The analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks, and offers five foundational principles for ethical medical data donation suggested as a draft code. (shrink)

James Wynn’s timely investigation highlights scientific studies grounded in publicly gathered data and probes the rhetoric these studies employ. Many of these endeavors, such as the widely used SETI@home project, simply draw on the processing power of participants’ home computers; others, like the protein-folding game FoldIt, ask users to take a more active role in solving scientific problems. In Citizen Science in the Digital Age: Rhetoric, Science, and Public Engagement, Wynn analyzes the discourse that enables these (...) scientific ventures, as well as the difficulties that arise in communication between scientists and lay people and the potential for misuse of publicly gathered data. (shrink)

Improving generalization in psychology will require more expansive data collection to fuel more expansive statistical models, beyond the scale of traditional lab research. We argue that citizen science is uniquely positioned to scale up data collection and, that in spite of certain limitations, can help to alleviate the generalizability crisis.

Wiggins and Wilbanks (2019) raise a number of interesting concerns vis-à-vis citizen science and research. However, one area of innovation in citizen science that has seen significant advancements...

Social innovations are usually understood as new ideas, initiatives, or solutions that make it possible to meet the challenges of societies in fields such as social security, education, employment, culture, health, environment, housing, and economic development. On the one hand, many citizen science activities serve to achieve scientific as well as social and educational goals. Thus, these actions are opening an arena for introducing social innovations. On the other hand, some social innovations are further developed, adapted, or altered (...) after the involvement of scientist-supervised citizens in research and with the use of the citizen science tools and methods such as action research, crowdsourcing, and community-based participatory research. Such approaches are increasingly recognized as crucial for gathering data, addressing community needs, and creating engagement and cooperation between citizens and professional scientists. However, there are also various barriers to both citizen science and social innovation. For example, management, quality and protection of data, funding difficulties, non-recognition of citizens’ contributions, and limited inclusion of innovative research approaches in public policies. In this volume, we open theoretical as well as empirically-based discussion, including examples, practices, and case studies of at least three types of relations between citizen science and social innovation: domination of the citizen science features over social innovation aspects; domination of the social innovation features over the citizen science aspects; and the ways to achieve balance and integration between the social innovation and citizen science features. Each of these relationships highlights factors that influence the development of the main scales of sustainability of innovations in the practice. These innovations are contributing to a new paradigm of learning and sharing knowledge as well as interactions and socio-psychological development of participants. Also, there are factors that influence the development of platforms, ecosystems, and sustainability of innovations such as broad use of the information and communications technologies including robotics and automation; emerging healthcare and health promotion models; advancements in the development and governance of smart, green, inclusive and age-friendly cities and communities; new online learning centers; agri-food, cohousing or mobility platforms; and engagement of citizens into co-creation or co-production of services delivered by public, private, non-governmental organizations as well as non-formal entities. (shrink)

BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based (...) medical research.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law. (shrink)

This book focuses on analyzing data on current initiatives and best practices in citizen engagement and education programs across various disciplines by highlighting emergent research and application techniques within citizen science initiatives.

As we navigate physical (e.g., supermarket) and digital (e.g., social media) systems, we generate personal data about our behavior. Researchers and designers increasingly rely on this data and appeal to several approaches to collect it. One of these is data donation, which encourages people to voluntarily transfer their (personal) data collected by external parties to a specific cause. One of the central pillars of data donation is informed consent, meaning people should be _adequately informed_ about (...) what and how their data will be used. However, can we be _adequately informed_ when it comes to donating our data when many times we don’t even know it is being collected and, even more so, what exactly is being collected? In this paper, we investigate how to foster (personal) data literacy and increase donors’ understanding of their data. We introduce a Research through Design approach where we define a data donation journey in the context of speech records, data collected by Google Assistant. Based on the data donation experiences of 22 donors, we propose a data donation framework that understands and approaches data donation as an encompassing process with mutual benefit for donors and researchers. Our framework supports a donation process that dynamically and iteratively engages donors in exploring and understanding their data and invites them to (re)evaluate and (re)assess their participation. Through this process, donors increase their data literacy and are empowered to give meaningfully informed consent. (shrink)

BackgroundPublic awareness and engagement are among the main prerequisites for protecting the rights of research participants and for successful and sustainable functioning of research biobanks. The aim of our study was to analyse public awareness and attitudes towards research biobanks in Latvia, and to compare these data with the results of the 2010 Eurobarometer study. We also analysed the influence of awareness and attitudes towards biobanks on willingness to participate in biobank studies and on preferred type of informed consent.MethodsWe (...) developed a 12-question survey repeating seven questions about biobanks from the 2010 Eurobarometer questionnaire and adding five others. After describing the study variables, we performed a two-stage analysis of the results. In the first stage we analysed differences between the answers from 2010 and 2019 and conducted univariate analyses of relationships among particular variables, and between those variables and the socio-demographic characteristics of participants. In the second stage we investigated multivariable associations of willingness to participate and type of consent with awareness, trust and the socio-economic characteristics of participants.ResultsAccording to our study, the general public in Latvia is still not well informed about research biobanks. Fewer respondents have heard about research biobanks than in 2010. At the same time, the number of respondents who are willing to donate biological samples and personal data to a biobank has increased, e.g. the number of respondents who would definitely or probably be willing to provide information about themselves has increased from 25.8.% to 40.7 since 2010. Overall, concerns about the donation of different types of biological samples and data to a biobank have slightly decreased.ConclusionsPublic awareness about biobanks is important for their sustainability. It needs to be increased not only by traditional methods of informing the public, but also by more innovative and participatory approaches, e.g. by citizen science projects. There is a need to strengthen the public visibility and trustworthiness of ethics committees in Latvia in the field of biobanking. (shrink)

As with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated with both of these growing methodological and collaborative processes; nonetheless, both bring with them ethical considerations that require careful thought and attention. This paper (...) addresses the ethical considerations that research teams must consider when using participatory methods and/or when working with industry and outlines a novel informed consent matrix designed to maintain the high ethical standard to which academic research in the healthcare arena has traditionally adhered. (shrink)

In light of arguments that citizen science has the potential to make environmental knowledge and policy more robust and democratic, this article inquires into the factors that shape the ability of citizen science to actually influence scientists and decision makers. Using the case of community-based air toxics monitoring with ‘‘buckets,’’ it argues that citizen science’s effectiveness is significantly influenced by standards and standardized practices. It demonstrates that, on one hand, standards serve a boundary-bridging function (...) that affords bucket monitoring data a crucial measure of legitimacy among experts. On the other hand, standards simultaneously serve a boundary-policing function, allowing experts to dismiss bucket data as irrelevant to the central project of air quality assessment. The article thus calls attention to standard setting as an important site of intervention for citizen science-based efforts to democratize science and policy. (shrink)

Citizen science is growing quickly, given its potential to enhance knowledge coproduction by diverse participants, generating large and global data sets. However, uneven participation in CS is still an important concern. This work aims to understand participation dynamics in CS and how they are shaped by participation barriers and drivers. We do so by examining participation in CONECT-e, a CS project that uses a wiki-like platform to document traditional ecological knowledge. More precisely, we analyze quantitative data (...) on participants’ profile and activity patterns and qualitative data on barriers and drivers of participation. Our findings suggest that overcoming the education, age, and residence participation barriers is challenging even in cocreated CS projects. This is potentially due to issues of perceived self-illegitimacy and low access to information and communication technologies. Our results also point out that participants’ alliance with the project’s objectives and trust relationships with the project team are important drivers of participation in CS projects. Finally, we also highlight the need to think beyond participation as single actions and rather consider participation diversity in CS as functional diversity in ecosystems, with participants performing a diverse set of interconnected tasks or functions. (shrink)

Drawing on face-to-face and online ethnographic, survey and interview data with participants in distributed computing projects around the world, this book sheds light on the organizational and social structures of voluntary distributed computing projects, communities and teams, with close attention to questions of motivation in projects that offer little or no traditional forms of reward, either financially or in terms of participants' careers. With its focus on non-market, non-hierarchical cooperation, this book is a case study of networked individuals around (...) the world who are part of a new social production of information. (shrink)

Background Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger—and also more likely to conflict with those of institution-based (...) researchers and other stakeholders—as participants become more involved, quantitatively and qualitatively, in the research process. It is not yet known, however, how genomic citizen science initiatives are managing the interests of their participants in accessing and controlling research outputs in practice. To help fill this gap, we conducted an in-depth review of relevant policies and practices of U.S.-based genomic citizen science initiatives. Methods We queried the peer-reviewed literature and grey literature to identify 22 genomic citizen science initiatives that satisfied six inclusion criteria. A data collection form was used to capture initiative features, policies, and practices relevant to participants’ access to and control over research outputs. Results This analysis revealed that the genomic citizen science landscape is diverse and includes many initiatives that do not have institutional affiliations. Two trends that are in apparent tension were identified: commercialization and operationalization of a philosophy of openness. While most initiatives supported participants’ access to research outputs, including datasets and published findings, none supported participants’ control over results via intellectual property, licensing, or commercialization rights. However, several initiatives disclaimed their own rights to profit from outputs. Conclusions There are opportunities for citizen science initiatives to incorporate more features that support participants’ access to and control over research outputs, consistent with their specific objectives, operations, and technical capabilities. (shrink)

The individual right of access to one’s own data is a crucial privacy protection long recognized in U.S. federal privacy laws. Mobile health devices and research software used in citizen science often fall outside the HIPAA Privacy Rule, leaving participants without HIPAA’s right of access to one’s own data. Absent state laws requiring access, the law of contract, as reflected in end-user agreements and terms of service, governs individuals’ ability to find out how much data (...) is being stored and how it might be shared with third parties. Efforts to address this problem by establishing norms of individual access to data from mobile health research unfortunately can run afoul of the FDA’s investigational device exemption requirements. (shrink)

Citizen science projects have started to utilize Machine Learning to sort through large datasets generated in fields like astronomy, ecology and biodiversity, biology, and neuroimaging. Human–machine systems have been created to take advantage of the complementary strengths of humans and machines and have been optimized for efficiency and speed. We conducted qualitative content analysis on meta-summaries of documents reporting the results of 12 citizen science projects that used machine learning to optimize classification tasks. We examined the (...) distribution of tasks between citizen scientists, experts, and algorithms, and how epistemic agency was enacted in terms of whose knowledge shapes the distribution of tasks, who decides what knowledge is relevant to the classification, and who validates it. In our descriptive results, we found that experts, who include professional scientists and algorithm developers, are involved in every aspect of a project, from annotating or labelling data to giving data to algorithms to train them to make decisions from predictions. Experts also test and validate models to improve their accuracy by scoring their outputs when algorithms fail to make correct decisions. Experts are mostly the humans involved in a loop, but when algorithms encounter problems, citizens are also involved at several stages. In this paper, we present three main examples of citizens-in-the-loop: when algorithms provide incorrect suggestions; when algorithms fail to know how to perform classification; and when algorithms pose queries. We consider the implications of the emphasis on optimization on the ideal of science and the role of citizen scientists from a perspective informed by Science and Technology Studies and Information Systems. Based on our findings, we conclude that ML in CS classification projects, far from being deterministic in its nature and effects, may be open to question. There is no guarantee that these technologies can replace citizen scientists, nor any guarantee that they can provide citizens with opportunities for more interesting tasks. (shrink)

We are developing the Neurological Disease Ontology (ND) to provide a framework to enable representation of aspects of neurological diseases that are relevant to their treatment and study. ND is a representational tool that addresses the need for unambiguous annotation, storage, and retrieval of data associated with the treatment and study of neurological diseases. ND is being developed in compliance with the Open Biomedical Ontology Foundry principles and builds upon the paradigm established by the Ontology for General Medical (...) class='Hi'>Science (OGMS) for the representation of entities in the domain of disease and medical practice. Initial applications of ND will include the annotation and analysis of large data sets and patient records for Alzheimer’s disease, multiple sclerosis, and stroke. (shrink)

This essay takes a historical view on “citizen science” by exploring its socialist version via the case of a Soviet amateur seismologist Vladimir Mannar. In the wake of the 1948 Ashgabat earthquake, which coincided with Lysenko’s victory in his campaign against genetics, Mannar launched an aborted campaign for a participatory “socialist seismology.” Mannar co-opted Lysenkoist language of science for the people and gained professional status within professional seismology but was shut out by the experts capitalizing on a (...) “big science” imperative of cold war. Mannar’s personal experiences of navigating competing pulls of cold war seismology and his vision of “people’s seismology,” marginalized within increasingly technical and instrumental cold war science, shed light on oxymoronic nature of citizen science, and the clash between participatory vision of science and an increasing reliance on high-level technical expertise. This case provides a vantage point from which to examine the dual nature of citizen science with its dual loyalties, ambiguities, and the constantly renegotiated status of data—the raison d’être and the most tangible outcome of the initiatives unfolded on the outer fringes of academic science. (shrink)

ICTs, personal data, digital rights, the GDPR, data privacy, online security… these terms, and the concepts behind them, are increasingly common in our lives. Some of us may be familiar with them, but others are less aware of the growing role of ICTs and data in our lives - and the potential risks this creates. These risks are even more pronounced for vulnerable groups in society. People can be vulnerable in different, often overlapping, ways, which place them (...) at a disadvantage to the majority of citizens; Table 3 in this guide presents some of the many forms and causes of vulnerability. As a result, vulnerable people need greater support to navigate the digital world, and to ensure that they are able to exercise their rights. This guide explains where such support can be found, and also answers the following questions: - What are the main ethical and legal issues around ICTs for vulnerable citizens? - Who is vulnerable in Europe? - How do issues around ICTs affect vulnerable people in particular? This guide is a resource for members of vulnerable groups, people who work with vulnerable groups, and citizens more broadly. It is also useful for data controllers1 who collect data about vulnerable citizens. While focused on citizens in Europe, it may be of interest to people in other parts of the world. It forms part of the Citizens’ Information Pack produced by the PANELFIT project, and is available in English, French, German, Italian and Spanish. You are welcome to translate this guide into other languages. Please send us a link to online versions in other languages, so that we can add them to the project website. (shrink)

BackgroundIn this article, we address questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted by the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public regarding predictive oncology, genetic sequencing, and cancer. MethodsThis paper presents the results of a citizen forum that included 73 participants. A research tool (...) titled "the mechanics of consent" was designed for this study. This tool is a table encouraging participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants’ discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis.ResultsThe results are a compilation of responses from the mechanics of consent tool divided into two sections; the first presents quantitative results of collective responses regarding attitudes to consent to donate their data. The second section present qualitative findings emerged from the discussion amongst participants.DiscussionChoice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits; who will be accessing and using their data; as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, by acting in a competent, reliable, and honest manner. Governance systems ought to be better equipped to address ethical issues raise by the growing presence of non-traditional research actors, consent of exchanges of data via digital devices and online activity such as social media and fairness of data trading. Finally, informed consent is one of the various elements that contribute to conducting ethical research. More needs to be done to strengthen governance and ensure adequate protection of research participants, particularly to address issues related to predictive health analytics. (shrink)

ABSTRACT It is argued that, in certain particular conditions related to the intellectual character of the deliberators and their cognitive diversity, small research teams that engage in deliberation in the analysis of data and involve citizens can better promote good epistemic results than those teams which do not involve citizens. In particular, it is argued that certain communities within the social sciences that lack the relevant cognitive diversity among their professionals can take advantage of the diversity found in the (...) citizenry to increase the epistemic quality of their research, as long as the citizens possess the relevant virtues. (shrink)

As biomedical citizen science initiatives become more prevalent, the unique ethical issues that they raise are attracting policy attention. One issue identified as a significant concern is the ethical oversight of bottom-up biomedical citizen science projects that are designed and executed primarily or solely by members of the public. That is because the federal rules that require ethical oversight of research by institutional review boards generally do not apply to such projects, creating what has been called (...) an ethics gap. -/- Working to close this gap, practitioners and scholars have considered new mechanisms of ethical oversight for biomedical citizen science. To date, however, participants’ attitudes about ethics and oversight preferences have not been systematically examined. This information is useful to efforts to develop ethical oversight mechanisms because it provides a basis for evaluating the likely effectiveness of specific features of such mechanisms and their acceptability from the perspective of biomedical citizen scientists. -/- Here, we report data from qualitative interviews with 35 stakeholders in bottom-up biomedical citizen science about their general ethics attitudes and preferences regarding ethical oversight. Interviewees described ten ethical priorities and endorsed oversight mechanisms that are voluntary, community-driven, and offer guidance. Conversely, interviewees rejected mechanisms that are mandatory, hierarchical, and inflexible. Applying these findings, we conclude that expert consultation and community review models appear to align well with ethical priorities and oversight preferences of many biomedical citizen scientists, although local conditions should guide the development and use of mechanisms in specific communities. (shrink)

Public sector adoption of AI techniques in welfare systems recasts historic national data as resource for machine learning. In this paper, we examine how the use of register data for development of predictive models produces new ‘afterlives’ for citizen data. First, we document a Danish research project’s practical efforts to develop an algorithmic decision-support model for social workers to classify children’s risk of maltreatment. Second, we outline the tensions emerging from project members’ negotiations about which datasets (...) to include. Third, we identify three types of afterlives for citizen data in machine learning projects: (1) data afterlives for training and testing the algorithm, acting as ‘ground truth’ for inferring futures, (2) data afterlives for validating the algorithmic model, acting as markers of robustness, and (3) data afterlives for improving the model’s fairness, valuated for reasons of data ethics. We conclude by discussing how, on one hand, these afterlives engender new ethical relations between state and citizens; and how they, on the other hand, also articulate an alternative view on the value of datasets, posing interesting contrasts between machine learning projects developed within the context of the Danish welfare state and mainstream corporate AI discourses of the bigger, the better. (shrink)

In June 2005, Italy held a referendum on repealing the law on medically assisted fertilization , which limits access to artificial reproduction to infertile couples, and prohibits the donation of gametes, the cryopreservation of embryos, preimplantation genetic diagnosis , and research on human embryos. The referendum was invalidated, and the law remained unchanged. The Italian political e bioethical debate on assisted reproduction was manipulated by the Catholic Church, which distorted scientific data and issues at stake with the help of (...) Catholic politicians and bioethicists. What happened in Italy shows that some perverse socio-cultural e political mechanisms are spreading the absurd and anti-historical view that scientific and technological advancements are threatening democracy and personal freedom. Scientists should not only contrast the political attempts at limiting freedom of scientific research, but also tell politicians, humanists and citizens that the invention of Western science with its view of scientific community as an “open society”, contributed and still contributes, through scientific education, to the construction and maintaining of the moral and political values underlying Western democracies. (shrink)

Background As citizen science continues to grow in popularity, there remains disagreement about what terms should be used to describe citizen science activities and participants. The question of how to self-identify has important ethical, political, and practical implications to the extent that shared language reflects a common ethos and goals and shapes behavior. Biomedical citizen science in particular has come to be associated with terms that reflect its unique activities, concerns, and priorities. To date, (...) however, there is scant evidence regarding how biomedical citizen scientists prefer to describe themselves, their work, and the values that they attach to these terms.Methods In 2018, we conducted semi-structured interviews with 35 biomedical citizen scientists in connection with a larger study to understand ownership preferences. Interview data were analyzed to identify the terms that interviewees used and avoided to describe themselves and their work, as well as the reasons for their preferences.Results Biomedical citizen scientists self-identified using three main terms: citizen scientist, biohacker, and community scientist. However, there was a lack of consensus among interviewees on the appropriateness of each term, two of which prompted conflicting responses. Self-identification preferences were based on personal judgments about whether specific terms convey respect, are provocative, or are broad and inclusive, as well as the desirability of each of these messages.Conclusions The lack of consensus about self-identification preferences in biomedical citizen science reflects the diversity of experiences and goals of individuals participating in this field, as well as different perceptions of the values signaled by and implications of using each term. Heterogeneity of preferences also may signal the parallel development of multiple communities in biomedical citizen science. (shrink)

In various official documents, the European Union has declared its goal to pursue a citizen-centric governance of digital transformation. Through a critical review of several of these documents, here we show how “citizen-centric” is more a glamouring than a driving concept. De facto, the EU is enabling a federated data system that is corporate-driven, economic-oriented, and GDPR-compliant; in other words, a Digital Single Market (DSM). This leaves out societal and collective-level dimensions of digital transformation—such as social inclusion, (...) digital sovereignty, and environmental sustainability—which are acknowledged, but not operationalized, by the EU as pillars of a citizen-centric governance. Hence, the door is open to a complementary approach to the governance of digital transformation. We argue that, while a federated data model can constitute the tech-legal backbone of the emerging DSM, a commoning of data, as an ecosystemic approach that maintains a societal and collective outlook by default, can represent a complement to enact a truly citizen-centric governance. (shrink)

Muitos termos possuem um sentido técnico sem que ele seja evidente para todos, por exemplo, a "governança ambiental", termo que remete no contexto atual a uma participação cidadã nesse tipo de questão, por exemplo, da saúde de um ecossistema específico, tal como uma floresta ou um vale agrícola, a partir de preocupações partilhadas e não a partir de uma problemática de controle organizacional. Após ter tornado preciso o que é a expertise e quais são os principais problemas postos pelo recurso (...) à expertise nos contextos da ação cidadã, proponho que as expertises técnicas podem ser postas no mesmo patamar que outros tipos de expertise, referindo principalmente aos saberes comuns, à prática e à experiência concreta, dita "de campo", o que corresponde a uma ampliação. Sugere-se, então, o modelo de fórum híbrido como quadro teórico possível dessa reformulação da concepção de expertise. Many terms have a technical meaning although it is not evident for everyone, for example, the "environmental governance", term that refers in the present context to citizen participation on this type of question, for example, of the health of a specific ecosystem, such as a forest or an agricultural field, from shared preoccupations and not from a problematic of organizational control. After having made precise what is the expertise and what are the main problems posed by the recourse to the expertise in the contexts of citizen action, I propose that technical expertise can be tantamount to other types of expertise, referring mainly to profane knowledge, to the practice and concrete experience called "of field", which corresponds to an enlargement. Then it is suggested the model of an hybrid forum as a possible theoretical frame of this reformulation of the conception of expertise. (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent and (...) informed consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent and (...) informed consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

The urgency of the paper is to explore the impact of the latest discoveries of the exact and human sciences on the activities of higher education in its ideological perspective. There is a tendency to increasing interest of medical students not only in professional issues, but also in the general atmosphere of changes in health care and the requirements already formulated by the society of the future. The purpose of the article is to continue our study of the historical and (...) philosophical evolution of humanistic ideas and views from the ideas of the times of Antiquity up to modern theories and futuristic predictions. The problem of the study is to analyze the phenomenon of transhumanism as the result of unrealistic expectations about the easy implementation of most people's dreams of health, happiness and even immortality. The prospects of development of means and methods of "artificial intelligence" are also studied. The research methods consist of combining the achievements of classical philosophy with the successes of the youngest sciences that study human beings, operate large data, use foresight and other means of forecasting. The central new notions are noosciences and nootechnologies, which are able to save mankind from the threats to its existence. Results of the research : a philosophical analysis of the new worldview – transhumanism has been undertaken in the article. The reasons for its appearance in the second half of the twentieth century are explained. The social and scientific sources and the main stages of the consolidation of supporters of transhumanism in the world and national associations have been studied. The variety of proposals of transhumanists and their relative unity as to the need for "human perfection" have been also studied. The main variants of "Transhumanistic manifestos " have been analyzed and showed the existence of two flows of proposals - technological and those oriented on changes in human behavior. It is proved that in our time transhumanism is an option of fundraising - the collection of donations from the very rich people who strive to live longer than it is possible now. It is indicated that transhumanism is supported by the male segment of the citizens of the West, who are keen on technological progress and, above all, fear of death. The position of T-m is positive for medical research. The conclusion s of our study showed the fact that existing variants of transhumanistic studies use only a minority of modern and promising technologies. Even leading scientists from Western Europe do not notice that among the nanotechnologies, the number of environmentally friendly nootechnologies is slowly growing. A group of scholars are studying these technologies and offering an increasing number of noosciences. We have chosen for our study the notion of "noohumanism". The article proves that in worldview and educational aspects noohumanism based on the noosciences has not only significant creative advantages over transhumanism, but is also devoid of its shortcomings. Medical and other sectors of higher education in Ukraine should rely on noohumanism, not transhumanism. (shrink)

Recent years have seen a surge in online collaboration between experts and amateurs on scientific research. In this article, we analyse the epistemological implications of these crowdsourced projects, with a focus on Zooniverse, the world’s largest citizen science web portal. We use quantitative methods to evaluate the platform’s success in producing large volumes of observation statements and high impact scientific discoveries relative to more conventional means of data processing. Through empirical evidence, Bayesian reasoning, and conceptual analysis, we (...) show how information and communication technologies enhance the reliability, scalability, and connectivity of crowdsourced e-research, giving online citizen science projects powerful epistemic advantages over more traditional modes of scientific investigation. These results highlight the essential role played by technologically mediated social interaction in contemporary knowledge production. We conclude by calling for an explicitly sociotechnical turn in the philosophy of science that combines insights from statistics and logic to analyse the latest developments in scientific research. (shrink)

Research in the organizational sciences has tended to portray prosocial behavior as an unqualified positive outcome that should be encouraged in organizations. However, only recently, have researchers begun to acknowledge prosocial behaviors that help maintain an organization’s positive image in ways that violate ethical norms. Recent scandals, including Volkswagen’s emissions scandal and Penn State’s child sex abuse scandal, point to the need for research on the individual factors and situational conditions that shape the emergence of these unethical pro-organizational behaviors. Drawing (...) on trait activation theory, we argue that the “dark” trait of Machiavellianism should make individuals more willing to engage in UPB. Further, we argue that this willingness will be augmented when Machiavellians hold bottom-line-mentality climate perceptions, or the perception that ethical standards matter less than organizational performance. Using data from 170 U.S. employees, results suggested that Machiavellians are more willing to engage in UPB, but that BLMCPs may not affect their motivation to engage in UPB. We discuss the study’s theoretical and practical implications, as well as avenues for research. (shrink)

Devices that record from and stimulate the brain are currently available for consumer use. The increasing sophistication and resolution of these devices provide consumers with the opportunity to engage in do-it-yourself brain research and contribute to neuroscience knowledge. The rise of do-it-yourself (DIY) neuroscience may provide an enriched fund of neural data for researchers, but also raises difficult questions about data quality, standards, and the boundaries of scientific practice. We administered an online survey to brain–computer interface (BCI) researchers (...) to gather their perspectives on DIY brain research. While BCI researcher concerns about data quality and reproducibility were high, the possibility of expert validation of data generated by citizen neuroscientists mitigated concerns. We discuss survey results in the context of an established ethical framework for citizen science, and describe the potential of constructive collaboration between citizens and researchers to both increase data collection and advance understanding of how the brain operates outside the confines of the lab. (shrink)

The results of two independent empirical studies with Flemish citizens were combined to address the problem of a short fall of information provision about higher welfare products. The research objectives were (1) to improve our understanding of how citizens conceptualize farm animal welfare, (2) to analyze the variety in the claimed personal relevance of animal welfare in the food purchasing decision process, and (3) to find out people’s needs in relation to product information about animal welfare and the extent to (...) which the current information caters to these needs. The first study consisted of a survey conducted in three consecutive years (2000–2002, n = 521) and was complemented with more recent qualitative data from four focus group discussions (2006, n = 29). Citizens’ conceptualization of farm animal welfare matched reasonably well with those in the scientific literature, although it is clearly influenced by a lower level of practical experience and a higher weight of empathy. In general, respondents indicated that animal welfare was an important product attribute, although it was less important than primary product attributes such as quality, health, and safety. Moral issues, rather than a perception of higher quality, were the main influence on preferences for higher welfare products. At present, higher standards of animal welfare are mostly guaranteed within more general quality assurance schemes. Yet people’s decisions to not choose higher welfare products seems to be related to the perceptual disconnection between eating animal food products and the living producing animals. Respondents generally thought better information provision was required and the present level of provision was strongly criticized. In combination, the findings of both studies help inform the discussion about how citizens can be informed about animal welfare and the preferred content, source, and medium of such information. The paper also provides insights into citizens’ semantic interpretation of the concept of animal welfare (what wordings they use) and the range of relevance that animal welfare has for different groups that, in turn is useful in identifying which segments can be targeted. This can contribute to a more effective valorization of animal welfare as a product attribute. (shrink)

Collecting seeds and specimens was an integral aspect of botany and natural history in the eighteenth century. Historians have until recently paid less attention to the importance of collecting, trading and compiling knowledge of their cultivation, but knowing how to grow and maintain plants free from disease was crucial to agricultural and botanical projects. This is particularly true in the case of food security. At the close of the eighteenth century, European diets (particularly among the poor) began shifting from wheat- (...) to potato-dependence. In Britain and Ireland during these decades, extensive crop damage was caused by diseases like ‘curl’ and ‘dry rot’ – leading many agriculturists and journal editors to begin collecting data on potato cultivation in order to answer practical questions about the causes of disease and methods that might mitigate or even eliminate their appearance. Citizens not only produced the bulk of these data, but also used agricultural print culture and participation in surveys to shape and direct the interpretation of these data. This article explores this forgotten scientific ambition to harness agricultural citizen science in order to bring stability and renewed vitality to the potato plant and its cultivation. I argue that while many agriculturists did recognize that reliance upon the potato brought with it unique threats to the food supplies of Britain and Ireland, their views on this threat were wholly determined by the belief that the diseases attacking potato plants in Europe had largely been produced or encouraged by erroneous cultivation methods. (shrink)

The aim of this workshop was to ask potential end-users of the citizens’ information pack on legal and ethical issues around ICTs the following questions: What is your knowledge of the EU’s General Data Protection Regulation, and what actions have you taken in response to these regulations? What challenges are you experiencing in ensuring the protection and security of your project data, and compliance with the GDPR, within existing data management processes/systems? What information/tools/resources do you need to (...) overcome these challenges? What are the best formats/channels for receiving, sharing and acting upon this information? What is the most appropriate structure/format for the citizens’ information pack? (shrink)

Introduction The paradigm shift to a knowledge‐based economy has incremented the use of personal information applied to health‐related activities, such as biomedical research, innovation, and commercial initiatives. The convergence of science, technology, communication and data technologies has given rise to the application of big data to health; for example through eHealth, human databases and biobanks. Methods In light of these changes, we enquire about the value of personal data and its appropriate use. In order to illustrate (...) the complex ground on which big data applied to health develops, we analyse the current situation of the European Union and two cases: the Catalan VISC+/PADRIS and the UK Biobank, as perspectives. Discussion and conclusions Personal health‐related data in the context of the European Union is being increasingly used for big data projects under diverse schemes. There, public and private sectors participate distinctively or jointly, pursuing very different goals which may conflict with individual rights, notably privacy. Given that, this paper advocates for stopping the unjustified accumulation and commercialisation of personal data, protecting the interests of citizens and building appropriate frameworks to govern big data projects for health. A core tool for achieving such goals is to develop consent mechanisms which allow truly informed but adaptable consent, conjugated with the engagement of donors, participants and society. (shrink)

In 1927, Walter Lippmann published The Phantom Public, denouncing the ‘mystical fallacy of democracy.’ Decrying romantic democratic models that privilege self-governance, he writes: “I have not happened to meet anybody, from a President of the United States to a professor of political science, who came anywhere near to embodying the accepted ideal of the sovereign and omnicompetent citizen.” Almost 90 years later, Lippmann’s pragmatism is as relevant as ever, and should be applied in new contexts where similar self-governance (...) concerns persist. This paper does just that, repurposing Lippmann’s argument in the context of the ongoing debate over the role of the digital citizen in Big Data management. It is argued that proposals by the Federal Trade Commission, the White House and the US Congress, championing failed notice and choice privacy policy, perpetuate a self-governance fallacy comparable to Lippmann’s, referred to here as the fallacy of data privacy self-management. Even if the digital citizen had the faculties and the system for data privacy self-management, the digital citizen has little time for data governance. We desire the freedom to pursue the ends of digital production, without being inhibited by the means. We want privacy, and safety, but cannot complete all that is required for its protection. If it is true that the fallacy of democracy is similar to the fallacy of data privacy self-management, then perhaps the pragmatic solution is representative data management: a combination of non/for-profit digital dossier management via infomediaries that can ensure the protection of personal data, while freeing individuals from what Lippmann referred to as an ‘unattainable ideal.’. (shrink)

The commentary raises political questions about the ways in which data has been constituted as an object vested with certain powers, influence, and rationalities. We place the emergence and transformation of professional practices such as ‘data science’, ‘data journalism’, ‘data brokerage’, ‘data mining’, ‘data storage’, and ‘data analysis’ as part of the reconfiguration of a series of fields of power and knowledge in the public and private accumulation of data. Data (...) politics asks questions about the ways in which data has become such an object of power and explores how to critically intervene in its deployment as an object of knowledge. It is concerned with the conditions of possibility of data that involve things, language, and people that together create new worlds. We define ‘data politics’ as both the articulation of political questions about these worlds and the ways in which they provoke subjects to govern themselves and others by making rights claims. We contend that without understanding these conditions of possibility – of worlds, subjects and rights – it would be difficult to intervene in or shape data politics if by that it is meant the transformation of data subjects into data citizens. (shrink)

Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes. With this in mind, the Science and Values Working Group of the (...) COST Action CHIP ME ‘Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives’ identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals’ trust in research. We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment. (shrink)

Bioethical debates on the use of human embryos and oocytes for stem cell research have often been criticized for the lack of empirical insights into the perceptions and experiences of the women and couples who are asked to donate these tissues in the IVF clinic. Empirical studies that have investigated the attitudes of IVF patients and citizens on the donation of their embryos and oocytes have been scarce and have focused predominantly on the situation in Europe and Australia. This article (...) examines the viewpoints on the donation of embryos for stem cell research among IVF patients and students in China. Research into the perceptions of patients is based on in-depth interviews with IVF patients and IVF clinicians. Research into the attitudes of students is based on a quantitative survey study. The empirical findings in this paper indicate that perceptions of the donation of human embryos for stem cell research in China are far more diverse and complex than has commonly been suggested. Claims that ethical concerns regarding the donation and use of embryos and oocytes for stem cell research are typical for Western societies but absent in China cannot be upheld. The article shows that research into the situated perceptions and cultural specificities of human tissue donation can play a crucial role in the deconstruction of politicized bioethical argumentation and the assumptions about “others” that underlie socio-ethical debates on the moral dilemmas of technology developments in the life sciences. (shrink)

A concise but informative overview of AI ethics and policy. -/- Artificial intelligence, or AI for short, has generated a staggering amount of hype in the past several years. Is it the game-changer it's been cracked up to be? If so, how is it changing the game? How is it likely to affect us as customers, tenants, aspiring homeowners, students, educators, patients, clients, prison inmates, members of ethnic and sexual minorities, and voters in liberal democracies? Authored by experts in fields (...) ranging from computer science and law to philosophy and cognitive science, this book offers a concise overview of moral, political, legal and economic implications of AI. It covers the basics of AI's latest permutation, machine learning, and considers issues such as transparency, bias, liability, privacy, and regulation. -/- Both business and government have integrated algorithmic decision support systems into their daily operations, and the book explores the implications for our lives as citizens. For example, do we take it on faith that a machine knows best in approving a patient's health insurance claim or a defendant's request for bail? What is the potential for manipulation by targeted political ads? How can the processes behind these technically sophisticated tools ever be transparent? The book discusses such issues as statistical definitions of fairness, legal and moral responsibility, the role of humans in machine learning decision systems, “nudging” algorithms and anonymized data, the effect of automation on the workplace, and AI as both regulatory tool and target. (shrink)

ZusammenfassungDer vorliegende Artikel widmet sich der Frage, wie Spiele und spielen zur Big-Data-basierten Wissensproduktion in der Hochenergiephysik beitragen. Als Beispiel dienen Detektorkollaborationen am Large Hadron Collider (LHC) der Europäischen Organisation für Kernforschung (CERN), in denen die Autorin seit 2014 kulturanthropologische Feldforschung unternommen hat. Der ludische Aspekt der Wissensproduktion wird hier in drei verschiedenen Dimensionen analysiert: der symbolischen, der ontologischen und der epistemischen. Erstere verweist auf das CERN als Ort, an dem ein kosmologisches Wahrscheinlichkeitsspiel mithilfe von Monte-Carlo-Simulationen durchgeführt wird. Die (...) Zweite wird durch kompetitive Infrastrukturen in der Arbeitspraxis verschiedener Kollaborationsgruppen sichtbar. Die dritte Dimension entfaltet sich durch ludische Plattformen, wie etwa Online Challenges und Citizen Science Games, die zur Entwicklung von machine learning algorithmen beitragen, deren Funktion notwendig ist, um die ungeheuren Mengen an Big Data verarbeiten zu können, die durch die Experimente gesammelt werden. Das CERN wird als Ort des Deep Play beschrieben, einem von Clifford Geertz entwickeltem Konzept, das dazu beiträgt, größere soziale und kulturelle Ordnungen durch die Analyse ludischer Kollektivphänomene zu begreifen. Der Artikel setzt sich darüber hinaus mit Peter Galisons Idee der Trading Zone auseinander und schlägt vor, diese in Zeiten von Big Data als Playground (Spielplatz) zu begreifen. Die Autorin hofft damit zu einer breiteren sozio-historiografischen Diskussion in den Science and Technology Studies (STS, Wissenschafts- und Technikforschung) und nicht zuletzt der Kulturanthropologie beizutragen, indem das Ludische in den Wissenschaften als zentrales Element für das Verständnis kollaborativer Wissensproduktion begriffen wird. (shrink)

The article analyses practices, perceptions and political dramatizations of bone marrow donation in Cyprus. Based on empirical data from an ethnographic study on practices of organ and bone marrow transplantation in postcolonial Cyprus, forms of oppositional biopolitics are analysed that are not bound by the modern, étatist regime of governing populations but capitalize on new developments in biomedicine, on new political movements, as well as on transformations in the political sphere. These reconfigurations are interpreted as instances of an emerging (...) bio-subpolitics that transcends national borders and produces new complexities, interrelations, associations and social forms that come into being alongside biomedicine. At the same time, these developments co-produce cosmopolitan citizens and new subjectivities, transcending nationally bound regimes of political deliberation and identification. These forms of biopolitics mobilize local historical experiences and take advantage of affordances provided by biomedical platforms operating on a global scale that make available an opportunity structure for a cosmopolitan bio-subpolitics. (shrink)