In their article “The Rise of Citizen Science in Health and Biomedical Research,” Wiggins and Wilbanks (2019) present a new typology for understanding the complex landscape of health and biomedical...

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 speed and scale of the COVID‐19 pandemic has highlighted the limits of current health systems and the potential promise of non‐establishment research such as “DIY” research. We consider one example of how DIY research is responding to the pandemic, discuss the challenges faced by DIY research more generally, and suggest that a “trust architecture” should be developed now to contribute to successful future DIY efforts.

The perspectives of genomic citizen scientists on ownership of research outputs are not well understood, yet they are useful for identifying alignment of participant expectations and project practices and can help guide efforts to develop innovative tools and strategies for managing ownership claims. Here, we report findings from 52 interviews conducted in 2018 and 2019 to understand genomic citizen science stakeholders’ conceptualizations of, experiences with, and preferences for ownership of research outputs. Interviewees identified four approaches for recognizing genomic citizen scientists’ (...) ownership and related credit interests in research outputs: shared governance via commons models; fractional ownership of benefits; full and creative attribution; and offensive and defensive patenting. Interviewees also agreed that the model selected by any project should at least maximize access to research outputs and, as appropriate and to the extent possible, broadly distribute rights of control and entitlements to research benefits. (shrink)

A key feature of unregulated mHealth research is the diversity of participants in this space. Applying an approach drawn from user experience design, we describe a set of archetypal unregulated mHealth researcher “personas,” which range from individuals who seek empowerment or have philanthropic objectives to those who are primarily motivated by financial gain or have misanthropic objectives. These descriptions are useful for evaluating policies applicable to mHealth to understand how they will impact various stakeholders.

Insurance coverage of abortion varies widely across the United States and is an extensively debated issue. Medicaid coverage of abortion is particularly relevant because the majority of abortion patients are poor or low‐income and are thus often covered by Medicaid. Since the Hyde Amendment was first passed in 1976, federal Medicaid funds have been banned from covering the costs of elective abortion. Although states are allowed to use their own funds to cover abortions for their Medicaid recipients, only 17 states (...) currently do so. Of these 17 states, only five cover abortion costs voluntarily; the others do so pursuant to court order. The medical literature includes few ethical analyses of the Hyde Amendment’s ban on Medicaid funding of elective abortions. To fill this gap, we perform an ethical analysis of federal policy to fund elective abortions using a consequentialist approach focused on consequences for pregnant women and their children. (shrink)

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...) groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers. (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)

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)

Background Investigative genetic genealogy (IGG) is a technique that involves uploading genotypes developed from perpetrator DNA left at a crime scene, or DNA from unidentified remains, to public genetic genealogy databases to identify genetic relatives and, through the creation of a family tree, the individual who was the source of the DNA. As policymakers demonstrate interest in regulating IGG, it is important to understand public perspectives on IGG to determine whether proposed policies are aligned with public attitudes.Methods We conducted eight (...) focus groups with members of the public (N = 72), sampled from four geographically diverse US regions, to explore general attitudes and perspectives regarding aspects of IGG practices, applications, and policies. Five major topics were explored in each focus group: when IGG should be used; who should perform IGG; how to approach consent for genetic database users; what systems of oversight should govern IGG practitioners; and whether to notify database users if their data are involved in law enforcement (LE) matching.Results Participants were supportive of IGG in most scenarios, especially for cold and violent cases. The favorable attitudes toward IGG were, however, tempered by distrust of law enforcement among some participants. All participants agreed that databases must inform users if IGG is allowed, but they did not agree on how individual database users should be allowed to opt out or whether to notify them if their data are involved in specific investigations. All participants agreed that IGG should be subject to some prescriptive guidelines, regulations, or accountability mechanisms.Conclusions These findings suggest broad public support for IGG, and interest in developing systems of accountability for its practice. Our study provides useful insight for policy makers, genomic database stewards, law enforcement, and other stakeholders in IGG’s practice, and suggests multiple directions for future research. (shrink)

Language has a rich typology of inferential types. It was recently shown that subjects are able to divide the informational content of new visual stimuli among the various slots of the inferential typology: when gestures or visual animations are used in lieu of specific words in a sentence, they can trigger the very same inferential types as language alone (Tieu et al., 2019 ). How general are the relevant triggering algorithms? We show that they extend to the auditory modality and (...) to music cognition. We tested whether pro-speech musical gestures, i.e. musical excerpts that replace words in sentences, can give rise to the same inferences. We show that it is possible to replicate the same typology of inferences using pro-speech music. Minimal and complex musical excerpts can behave just like language, gestures, and visual animations with respect to the logical behavior of their content when embedded in sentences. Specifically, we found that pro-speech music can generate scalar implicatures, presuppositions, supplements, and homogeneity inferences. (shrink)

This book is a defense of political liberalism as a feminist liberalism. A novel and restrictive account of public reason is defended. Then it is argued that political liberalism's core commitments restrict reasonable conceptions of justice to those that secure genuine, substantive equality for women and other marginalized groups.

Zeitgeist Literature is offered here as a term with great potential as a conceptual tool for analyzing literature that responds to the moment in which it was written. Such literature chronicles the social and political life of the current moment, its trends and moods, and the mysterious forces that dictate tastes, manners, feelings, and actions of the collective.

Roots are good to think with indeed most of us use them as a metaphor every day. A root can signify the hiddenness of our beginnings, or, in its bifurcating structure, the various possibilities in the life of an individual or a collective. This book looks at rootedness as a metaphor for the genealogical origins of people and their attachment to place and how this metaphor transformed so rapidly in twentieth-century Europe. Christy Wampole s case study is France, with its (...) contradictory legacies of Enlightenment universalism, anti-Semitism, and colonialism. At one time, French nationalist rhetoric portrayed the Jews as unrooted and thus unrighteous people. After the two world wars, the root metaphor figured in the new French philosophy (notably Deleuze and Guattari). And recently, Caribbean thinkers in Haiti, Guadeloupe, and Martinique have debated whether their roots were in Africa, France, the Caribbean, or in some pan-national network that could not be identified on a map. Walpole argues that while the metaphor was perhaps once useful in the establishment of communities and identities, that usefulness has expired. The longer we remain attached to the figure of rootedness, the more discord it sows. Giving up on the metaphor of rootedness, Wampole urges, allows us to see at last that we are in fact unbound by the land we inhabit.". (shrink)

The data science era is characterized by data-driven automated decision systems (ADS) enabling, through data analytics and machine learning, automated decisions in many contexts, deeply impacting our lives. As such, their downsides and potential risks are becoming more and more evident: technical solutions, alone, are not sufficient and an interdisciplinary approach is needed. Consequently, ADS should evolve into data-informed ADS, which take humans in the loop in all the data processing steps. Data-informed ADS should deal with data responsibly, guaranteeing nondiscrimination (...) with respect to protected groups of individuals. Nondiscrimination can be characterized in terms of different types of properties, like fairness and diversity. While fairness, i.e., absence of bias against minorities, has been widely investigated in machine learning, only more recently this issue has been tackled by considering all the steps of data processing pipelines at the basis of ADS, from data acquisition to analysis. Additionally, fairness is just one point of view of nondiscrimination to be considered for guaranteeing equity: other issues, like diversity, are raising interest from the scientific community due to their relevance in society. This paper aims at critically surveying how nondiscrimination has been investigated in the context of complex data science pipelines at the basis of data-informed ADS, by focusing on the specific data processing tasks for which nondiscrimination solutions have been proposed. (shrink)

(2010). The representation of animals in the early modern period. Annals of Science: Vol. 67, The Representation of Animals in the Early Modern Period, pp. 299-301. doi: 10.1080/00033790.2010.488139.

"To what extent can legal decisions be objective and fair, and how far does government depend on the law for its legitimacy? This concise analytical book examines the theory of both individual and political justice, concluding that many modern legal philosophers have undermined the prestige of the law by exaggerated claims in its defence. This is a basic book in jurisprudence"--Jacket.

This groundbreaking book is the first to provide a critical overview of the relationship between contemporary ceramics and curatorial practice in museum culture. Ceramic objects form a major part of museum collections, with connections to anthropology, archaeology and other disciplines that engage with the cultural and social history of humankind. In recent years museums have provided the impetus for cutting-edge artistic practice, either as a response to particular collections, or as part of exhibitions. But the question of how museums have (...) staged contemporary ceramics and how ceramic artists respond to museum collections has not been the subject of published research to date. This book examines how ceramic artists have, over the last decade, begun to animate museum collections in new ways, and reflects on the impact that these new initiatives have had in the broad context of visual culture. Ceramics in the Expanded Field is the culmination of a three-year AHRC funded project, and reflects its major findings. It brings together leading international voices in the field of ceramics, research undertaken throughout the project and papers delivered at the concluding conference. By examining the benefits and constraints of interventions and the dialogue between ceramics and museological practice, this book will bring focus to an area of museology that has not yet been theorized, and will contribute to policy debates and art practice. (shrink)

In the paper, titled ‘Choosing death in unjust conditions: hope, autonomy and harm reduction,’ Wiebe and Mullin argue that people living in unjust social conditions are sufficiently autonomous to request medical assistance in dying (MAiD). The ethical issue is that some people may request MAiD primarily because of unjust social conditions, not their illness, disease, disability or decline in capability. It is easily agreed that people living in unjust social conditions can be autonomous. Nevertheless, Wiebe and Mullin fail to appreciate (...) that autonomy is only a necessary condition for MAiD. In addition to autonomy, one must decide that providing assisted dying to a patient because they are living in unjust social conditions is ethical. Central to making this ethical decision is the principle of non-maleficence, famously articulated as ‘do no harm.’ The authors admit that performing MAiD in response to unjust social circumstances is harmful, but they justify this harmful action by appealing to the principle of harm reduction. A fundamental flaw of their approach is that it relies on the legislative definition of intolerable suffering, which is based on circular reasoning and given that 99.2% of patients that have applied for MAiD satisfied this criterion, it is essentially equivalent to no standard/criterion. Canadian society is struggling with the ethical implications of its permissive MAiD programme, and, fundamental to this debate, will be determining the proper balance between autonomy and non-maleficence for people living in unjust social conditions. (shrink)

Philosopher Kings? The Adjudication of Conflicting Human Rights and Social Values, by George C. Christie, examines the attempts by courts to sort out conflicts involving freedom of expression, including religious expression, on the one hand, and rights to privacy and other important social values on the other. It approaches the subject from a comparative perspective, using principally cases decided by European and United States courts. A significant part of this book analyzes conflicts between freedom of expression and the right to (...) privacy. In a world in which, freedom of expression and privacy are said to be of equal value, the book explores whether it is possible to develop, through case-by-case adjudication, a legal regime which can give clear direction as to what expression is or is not permitted. Otherwise, if such a regime proves impossible, in the guise of recognizing the equal value of expression and privacy, privacy may become de facto the preferred value. (shrink)

Is a feminist political liberalism possible? Political liberalism’s regard for a wide range of comprehensive doctrines as reasonable makes some feminists skeptical of its ability to address sex inequality. Indeed, some feminists claim that political liberalism maintains its position as a political liberalism at the expense of securing substantive equality for women. We claim that political liberalism’s core commitments actually restrict all reasonable political conceptions of justice to those that secure genuine substantive equality for all, including women and other marginalized (...) groups. In particular, we argue that political liberalism’s criterion of reciprocity limits reasonable political conceptions of justice to those that eliminate social conditions of domination and subordination relevant to reasonable democratic deliberation among equal citizens and that the criterion of reciprocity requires the social conditions necessary for recognition respect among persons as equal citizens. As a result, we maintain that the criterion of reciprocity limits reasonable political conceptions of justice to those that provide genuine equality for women along various dimensions of social life central to equal citizenship. (shrink)

ABSTRACT When hope is discussed in bioethics’ literature, it is most often in the context of ‘false hopes’ and/or how to maintain hope while breaking bad news to patients. Little or no time is generally devoted to the description of hope that supports these analyses. In this paper, I present a detailed description of hope, one designed primarily for the healthcare context. Noting that hope is an emotional attitude, four key aspects are explored. In particular, the function of imagination in (...) hope is discussed in depth. Through an examination of the relationship between hope and vulnerability, I demonstrate how adequately describing hope can broaden the normative inquiry into the role of hope in healthcare. Three ways in which persons with hope can be vulnerable are illustrated, and the challenge of how healthcare providers can attend in moral ways to the hopes of patients is identified. (shrink)

The metaphor of “the ghastly kitchen” of life science research, the places that, said the nineteenth-century physiologist Claude Bernard, stirred “the fetid and throbbing ground of life,” is well known. In the seventeenth century, the kitchen, and particularly the scullery, was the site of the slaughter, butchery, and dismemberment by carving of a variety of animals. The tools and techniques employed in these activities overlapped considerably with those of animal and human dissection. Dissection often took place in residences and the (...) kitchen was the most likely place for this activity. This challenges historians’ identification of the kitchen as an exclusively female realm. The preparation of food and medicines occurred in tandem with experimental natural philosophy, sharing tools as well as the sensory apparatus of cooking, including tasting and smelling. (shrink)

"Essays on Philosophy, Politics, & Economics" offers a critical examination of economic, philosophical, and political notions, with an eye towards working ...

Culture has been identified as a significant determinant of ethical attitudes of business managers. This research studies the impact of culture on the ethical attitudes of business managers in India, Korea and the United States using multivariate statistical analysis. Employing Geert Hofstede's cultural typology, this study examines the relationship between his five cultural dimensions (individualism, power distance, uncertainty avoidance, masculinity, and long-term orientation) and business managers' ethical attitudes. The study uses primary data collected from 345 business manager participants of Executive (...) MBA programs in selected business schools in India, Korea and the United States using Hofstede's Value Survey Module (94) and an instrument designed by the researchers to measure respondents' ethical attitudes (attitudes toward business ethics in general and toward twelve common questionable practices in particular). Results indicate that national culture has a strong influence on business managers' ethical attitudes. In addition to national culture, respondents' general attitudes toward business ethics are related to their personal integrity; their attitudes toward questionable business practices are related to the external environment and gender, as well as to their personal integrity. A strong relationship exists between cultural dimensions of individualism and power distance and respondents' ethical attitudes toward certain questionable practices. The analysis of the relationship between cultural dimensions of masculinity, uncertainty avoidance and long-term orientation and respondents' ethical attitudes toward questionable practices produced mixed results, likely due to the lack of notable differences in cultural dimension scores among the countries surveyed. (shrink)

Recent downward trends in corporate giving have renewed interest in the factors that shape corporate philanthropy. This paper examines the relationships between charitable contributions, firm size and industry. Improvements over previous studies include an IRS data base that covers a much broader range of firm sizes and industries as compared to previous studies and estimation using an instrumental variable technique that explicitly addresses potential simultaneity between charitable contributions and profitability. Important findings provide evidence of a cubic relationship between charitable giving (...) and firm size and evidence of strong industry effects. The plus-minus-plus regression coefficient sign pattern for the cubic firm size model suggests that small and large firms give more relative to total receipts with lower giving ratios among medium size firms. One interpretation for this finding is that small firms are close to the communities they serve while high visibility creates a need for large firm philanthropy. Strong industry effects provide evidence of inter-industry differences in giving culture and/or different public relations requirements across industries. (shrink)

This target article focuses on dynamics that arise in three typical ethically complex cases in which psychiatric consultations are requested by physicians: a dying patient refuses life-prolonging treatment, an uncooperative patient demands to be allowed to go outside and smoke, and an angry patient demands to be admitted to the hospital. The discussion canvasses what is at stake morally and clinically in each of these cases and explores clinician–patient interactions, dynamics in relationships between consulting physicians and consultant psychiatrists, patient transference, (...) and physician countertransference. The article defines legalism and countertransference and argues that an ethically and clinically important consequence of these phenomena for patients is distortion of clinicians' perceptions of patients' decisions and vulnerabilities. The discussion also describes how legalism and countertransference adversely affect how clinicians treat their psychiatrist colleagues. Finally, the article suggests how the effects of legalism and countertransference can be mitigated. (shrink)

There are several important conceptual issues and questions about the practice of healthcare ethics that can, and should, inform the development of any practice standards. This paper provides a relatively short overview of seven of these issues, with the invitation for further critical reflection and examination of their relevance to and implications for practice standards. The seven issues described include: diversity (from the perspective of training and experience); moral expertise and authority/influence; being an insider or outsider; flexibility and adaptability (for (...) local contexts of practice); the relative weighting of procedural and normative aspects of ethics practice; making mistakes or errors; and conflicts of interest in practice. (shrink)

Social cooperation based on reciprocity is the cornerstone of many theories of justice. However, what is central to social cooperation based on reciprocity? How does basing social cooperation on reciprocity structure and constrain theories of justice? In this paper, I consider what is central to reciprocity. I argue that the purpose of reciprocal exchange among persons is important for determining the appropriateness of reciprocal exchanges and that sustaining mutually advantageous relations is not always the point or the only point of (...) reciprocity. This has important implications for theorizing about justice. I show this by outlining two conceptions of justice as reciprocity. (shrink)

The term "callous" has not, to this point, been studied empirically or considered philosophically in the context of healthcare professionalism. It should be, however, because its uses seem peculiar. Sometimes "callous" is used to suggest that becoming callous confers a benefit of some protection against emotional distress, which might be considered expedient in the healthcare work environment. But, "callous" also refers to a person's unappealing demeanor of hardened insensitivity. The tension between these different moral connotations of "callous" prompts several empirical, (...) psychological, and moral questions; I introduce and entertain a few here. I also suggest a distinction between callousness and inurement and argue for why this distinction is important to appreciate and uphold in health professions education. (shrink)