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)

This book is a co-publication and appears in conjunction with an exhibition organized and presented by the Mead Art Museum at Amherst College, on the occasion of the centennial celebration nationwide of Singer's birth in 2004.

The literature on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises concerns that these technologies may affect personality, mood, and behavior. We conducted semi-structured interviews with researchers (n = 23) involved in developing next-generation DBS systems, exploring their perspectives on ethics and policy topics including whether DBS/aDBS can cause such changes. The majority of researchers reported being aware of personality, mood, or behavioral (PMB) changes in recipients of DBS/aDBS. Researchers offered varying estimates of the frequency of PMB changes. A (...) smaller majority reported changes in personality specifically. Some expressed reservations about the scientific status of the term ‘personality,’ while others used it freely. Most researchers discussed negative PMB changes, but a majority said that DBS/aDBS can also result in positive changes. Several researchers viewed positive PMB changes as part of the therapeutic goal in psychiatric applications of DBS/aDBS. Finally, several discussed potential causes of PMB changes other than the device itself. (shrink)

Researchers are developing a fertility preservation technique?testicular tissue cryopreservation (TTCP)?for prepubescent boys who may become infertile as a result of their cancer treatment. Although this technique is still in development, some researchers are calling for its widespread use. They argue that if boys do not bank their tissue now, they will be unable to benefit from any therapies that might be developed in the future. There are, however, risks involved with increasing access to an investigational procedure. This article examines four (...) methods of expanding access to TTCP: (1) expansion of institutional review board (IRB)-approved research trials; (2) offering TTCP as an innovative procedure in hospitals; (3) offering TTCP as a standard practice in hospitals; and (4) commercialization of TTCP. The ethical and practical implications of each are evaluated through a comparison with umbilical cord blood banking (UCBB), a technology that has achieved widespread use based on similar claims of future benefit. (shrink)

The expansion of research on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises important neuroethics and policy questions related to data sharing. However, there has been little empirical research on the perspectives of experts developing these technologies. We conducted semi-structured, open-ended interviews with aDBS researchers regarding their data sharing practices and their perspectives on ethical and policy issues related to sharing. Researchers expressed support for and a commitment to sharing, with most saying that they were either sharing their data (...) or would share in the future and that doing so was important for advancing the field. However, those who are sharing reported a variety of sharing partners, suggesting heterogeneity in sharing practices and lack of the broad sharing that would reflect principles of open science. Researchers described several concerns and barriers related to sharing, including privacy and confidentiality, the usability of shared data by others, ownership and control of data (including potential commercialization), and limited resources for sharing. They also suggested potential solutions to these challenges, including additional safeguards to address privacy issues, standardization and transparency in analysis to address issues of data usability, professional norms and heightened cooperation to address issues of ownership and control, and streamlining of data transmission to address resource limitations. Researchers also offered a range of views on the sensitivity of neural activity data (NAD) and data related to mental health in the context of sharing. These findings are an important input to deliberations by researchers, policymakers, neuroethicists, and other stakeholders as they navigate ethics and policy questions related to aDBS research. (shrink)

Children’s ability to pretend, and the apparent lack of pretence in children with autism, have become important issues in current research on ‘theory of mind’, on the assumption that pretend play may be an early indicator of metarepresentational abilities.

Infants are sensitive to statistical regularities (i.e., transitional probabilities, or TPs) relevant to segmenting words in fluent speech. However, there is debate about whether tracking TPs results in representations of possible words. Infants show preferential learning of sequences with high TPs (HTPs) as object labels relative to those with low TPs (LTPs). Such findings could mean that only the HTP sequences have a word‐like status, and they are more readily mapped to a referent for that reason. But these findings could (...) also suggest that HTP sequences are easier to encode, just like any other predictable sequence. Here we aimed to distinguish between these explanations. To do so, we built on findings that infants become resistant to learning labels that are not typical of their native language as they approach 2 years of age and add words to their lexicons. If tracking TPs in speech results in identifying candidate words, at this age TPs may have reduced power to confer lexical status when they yield a unit that is very dissimilar to word forms that are typical of infants’ native language. Indeed, we found that at 20 months, English‐learning infants with relatively small vocabularies learned HTP Italian words (but not LTP words) as object labels, while infants with larger vocabularies resisted learning HTP Italian words. These findings suggest that the HTP sequences may be represented as candidate words, and more broadly, that TP statistics are relevant to word learning. (shrink)

Concerned especially with the work of making a democracy of distinction, Frank shows that such a democracy requires freedom and equality achieved through the exercise of virtue.

People are motivated to acquire self-evaluative information that favours themselves or information that confirms their present self-views. We proposed that par...

We are used to talking about the “structure” posited by a given theory of physics, such as the spacetime structure of relativity. What is “structure”? What does the mathematical structure used to formulate a theory tell us about the physical world according to the theory? What if there are different mathematical formulations of a given theory? Do different formulations posit different structures, or are they merely notational variants? I consider the case of Lagrangian and Hamiltonian classical mechanics. I argue that, (...) contrary to standard wisdom, these are not genuinely equivalent theories: they differ in statespace structure. I suggest that we should be realists about statespace structure. (shrink)

The conversation with Jill H. Casid and Anna Campbell is a reconceptualization of several themes to develop an aesthetic that incorporates notions of the necropolitical and redefines the concept of the Anthropocene as the Necrocene. The Necrocene implies an era marked by death, decay, and the consequences of human impact on the environment, as well as a critical reflection on the choices individuals and societies make that contribute to the transition from the Anthropocene to the Necrocene. These reflections serve (...) as cautionary tales or reflections on the unsustainable path of the Anthropocene. An important reflection in the interview is how queer and transgender people are using art and assemblages to refuse the terms of the current tensions of the culture wars. (shrink)

Despite significant ethical advances in recent years, including professional developments in ethical review and codification, research deception continues to be a pervasive practice and contentious focus of debate in the behavioral sciences. Given the disciplines' generally stated ethical standards regarding the use of deceptive procedures, researchers have little practical guidance as to their ethical acceptability in specific research contexts. We use social contract theory to identify the conditions under which deception may or may not be morally permissible and formulate practical (...) recommendations to guide researchers on the ethical employment of deception in behavioral science research. (shrink)

Staff reported paranormal experiences in connection with the outpatient Medical Assistance in Dying room at the hospital. This case study reports on staff experiences and illustrates how the Ethics team’s role expanded to deal with this novel situation by facilitating an interdisciplinary response.

The capacity of next-generation closed-loop or adaptive deep brain stimulation devices to read and write shows great potential to effectively manage movement, seizure, and psychiatric disorders, and also raises the possibility of using aDBS to electively modulate mood, cognition, and prosociality. What separates aDBS from most neurotechnologies currently used for enhancement is that aDBS remains an invasive, surgically-implanted technology with a risk-benefit ratio significantly different when applied to diseased versus non-diseased individuals. Despite a large discourse about the ethics of enhancement, (...) no empirical studies yet examine perspectives on enhancement from within the aDBS research community. We interviewed 23 aDBS researchers about their attitudes toward expanding aDBS use for enhancement. A thematic content analysis revealed that researchers share ethical concerns related to safety and security; enhancement as unnecessary, unnatural or aberrant; and fairness, equality, and distributive justice. Most researchers felt that enhancement applications for DBS will eventually be technically feasible and that attempts to develop such applications for DBS are already happening. However, researchers unanimously felt that DBS ideally should not be considered for enhancement until researchers better understand brain target localization and functioning. While many researchers acknowledged controversies highlighted by scholars and ethicists, such as potential impacts on personhood, authenticity, autonomy and privacy, their ethical concerns reflect considerations of both gravity and perceived near-term likelihood. (shrink)

This is a study involving three HIV clinics in the Canadian provinces of Newfoundland and Labrador, and Manitoba. We sought to identify ethical issues involving health care providers and clinic clients in these settings, and to gain an understanding of how different ethical issues are managed by these groups. We used an institutional ethnographic method to investigate ethical issues in HIV clinics. Our researcher conducted in-depth semi-structured interviews, compiled participant observation notes, and studied health records in order to document ethical (...) issues in the clinics, and to understand how health care providers and clinic clients manage and resolve these issues. We found that health care providers and clinic clients have developed work processes for managing ethical issues of various types: conflicts between client-autonomy and public health priorities, difficulties associated with the criminalization of nondisclosure of HIV positive status, challenges with non-adherence to HIV treatment, the protection of confidentiality, barriers to treatment access, and negative social determinants of health and well-being. Some ethical issues resulted from structural disadvantages experienced by clinic clients. The most striking findings in our study were the negative social determinants of health and well-being experienced by some clinic clients – such as experiences of violence and trauma, poverty, racism, colonization, homelessness, and other factors affecting well-being such as problematic substance use. These negative determinants were at the root of other ethical issues, and are themselves of ethical concern. (shrink)

In the US, research payments are technically taxable income. This article argues that tax liability is a form of possible economic and legal risk of paid research participation. Findings are presented from empirical research on Phase I healthy volunteer trials. The article concludes by discussing the implications of these findings for the informed consent process, as well as for broader ethical issues in whether and how payments for research participation should be regulated.

Jill North offers answers to questions at the heart of the project of interpreting physics. How do we figure out the nature of the world from a mathematically formulated theory? What do we infer about the world when a physical theory can be mathematically formulated in different ways? The notion of structure is crucial to North's answers.

Altered Reading will interest philosophers, literary critics, scholars of religion, and others drawn to Levinas's work.

Inspired by Jill Kraye's many contributions to European intellectual history, this volume presents a diverse collection of studies in Renaissance philosophy and humanism by leading experts in the field.

O’Loughlin and Thagard (2000) present a specific computational implementation of the idea that the problems encountered by a child with autism in classic False Belief tasks derive from a failure to maintain coherence among multiple propositions. They argue that this failure can be explained as a structural feature of a connectionist network attempting to maintain coherence. The current paper criticizes this implementation because it falsely predicts that the same children will have a parallel problem with the False Photographs task. The (...) fact that the content of representations makes a difference while the structure remains constant casts doubt upon their claim. (shrink)

In her 2023 Agriculture, Food & Human Values Society (AFHVS) Presidential Address, Jill Clark reflects on the importance of “joy” in academic pursuits to confront the power of the conventional, industrial food system and generate power through our collective work. Clark addresses the various dimensions of power and their role in addressing systemic injustices by turning questions of power back on herself, examining her engaged research in public participation and collaborative governance. She delves into the need for reflexivity, emphasizing (...) the burden of participation and the ethical dilemmas faced when engaging within inherently inequitable systems. The address acknowledges the potential for collectively generating power to change the conversation and normalize diverse perspectives in the food system discourse. It highlights the role of organizations like the AFHVS in providing spaces for interdisciplinary work and proposes boundary-spanning with other food movement organizations. Clark invites scholars and practitioners to join in table-building efforts to promote inclusivity and reflexivity within AFHVS. (shrink)

I argue that the fundamental space of a quantum mechanical world is the wavefunction's space. I argue for this using some very general principles that guide our inferences to the fundamental nature of a world, for any fundamental physical theory. I suggest that ordinary three-dimensional space exists in such a world, but is non-fundamental; it emerges from the fundamental space of the wavefunction.

Plato's entire fictive world is permeated with philosophical concern for Eros, well beyond the so-called erotic dialogues. Several metaphysical, epistemological and cosmological conversations - Timaeus, Cratylus, Parmenides, Theaetetus and Phaedo - demonstrate that Eros lies at the root of the human condition and that properly guided Eros is the essence of a life well lived. This book presents a holistic vision of Eros, beginning with the presence of Eros at the origin of the cosmos and the human soul, surveying four (...) types of human self-cultivation aimed at good guidance of Eros and concluding with human death as a return to our origins. The book challenges conventional wisdom regarding the 'erotic dialogues' and demonstrates that Plato's world is erotic from beginning to end: the human soul is primordially erotic and the well-cultivated erotic soul can best remember and return to its origins, its lifelong erotic desire. (shrink)

Ensure learners truly understand all the essential TOK foundations and provide a practical learning scaffold to confidently progress them onto higher order thinking. Comprehensively supporting the TOK course book and mapped to the 2013 syllabus, this focused guide distils the big TOK ideas and builds student confidence right from the start.

In a recent paper, Malament (2004) employs a time reversal transformation that differs from the standard one, without explicitly arguing for it. This is a new and important understanding of time reversal that deserves arguing for in its own right. I argue that it improves upon the standard one. Recent discussion has focused on whether velocities should undergo a time reversal operation. I address a prior question: What is the proper notion of time reversal? This is important, for it will (...) affect our conclusion as to whether our best theories are time-reversal symmetric, and hence whether our spacetime is temporally oriented. *Received February 2007; revised March 2008. †To contact the author, please write to: Department of Philosophy, Yale University, P.O. Box 208306, New Haven, CT 06520-8306; e-mail: jill[email protected]. (shrink)

Engagement happens when academics and non-academics form partnerships to create mutual understanding, and then take action together. An example is the “value web” work associated with W. K. Kellogg Foundation’s Food Systems Higher Education–Community Partnership. Partners nationally work on local food systems development by building value webs. “Value chains,” a concept with considerable currency in the private sector, involves creating non-hierarchical relationships among otherwise disparate actors and entities to achieve collective common goals. The value web concept is extended herein by (...) separating the values of the web itself, such as the value of collaboration, from values “in” the web, such as credence values associated with a product or service. By sharing and discussing case examples of work underway around the United States, the authors make a case for employing the value webs concept to represent a strategy for local food systems development, specifically, and for higher education–community partnerships, generally. (shrink)

The concept of meaningful work has recently received increased attention in philosophy and other disciplines. However, the impact of the increasing robotization of the workplace on meaningful work has received very little attention so far. Doing work that is meaningful leads to higher job satisfaction and increased worker well-being, and some argue for a right to access to meaningful work. In this paper, we therefore address the impact of robotization on meaningful work. We do so by identifying five key aspects (...) of meaningful work: pursuing a purpose, social relationships, exercising skills and self-development, self-esteem and recognition, and autonomy. For each aspect, we analyze how the introduction of robots into the workplace may diminish or enhance the meaningfulness of work. We also identify a few ethical issues that emerge from our analysis. We conclude that robotization of the workplace can have both significant negative and positive effects on meaningful work. Our findings about ways in which robotization of the workplace can be a threat or opportunity for meaningful work can serve as the basis for ethical arguments for how to—and how not to—implement robots into workplaces. (shrink)

_Wittgenstein, Mind and Meaning_ offers a provocative re-reading of Wittgenstein's later writings on language and mind, and explores the tensions between Wittgenstein's ideas and contemporary cognitivist conceptions of the mental. This book addresses both Wittgenstein's later works as well as contemporary issues in philosophy of mind. It provides fresh insight into the later Wittgenstein and raises vital questions about the foundations of cognitivism and its wider implications for psychology and cognitive science.