The concept of ‘ownership’ is increasingly central to debates, in the media, health policy and bioethics, about the appropriate management of clinical data. I argue that the language of ownership acts as a metaphor and reflects multiple concerns about current data use and the disenfranchisement of citizens and collectives in the existing data ecosystem. But exactly which core interests and concerns ownership claims allude to remains opaque. Too often, we jump straight from ‘ownership’ to ‘private property’ and conclude ‘the data (...) belongs to the patient’. I will argue here that private property is only one type of relevant relationship between people, communities and data. There are several reasons to doubt that conceptualising data as private property presents a compelling response to concerns about clinical data ownership. In particular I argue that clinical data are co-constructed, so a property account would fail to confer exclusive rights to the patient. A non-property account of ownership acknowledges that the data are ‘about the patient’, and therefore the patient has relevant interests, without jumping to the conclusion that the data ‘belongs to the patient’. On this broader account of ownership, the relevant harm is the severing of the connection between the patient and their data, and the solution is to re-engage and re-connect patients to the data research enterprise. (shrink)

The future of health research will be characterised by three continuing trends: rising demand for health data; increasing impracticability of obtaining specific consent for secondary research; and decreasing capacity to effectively anonymise data. In this context, governments, clinicians and the research community must demonstrate that they can be responsible stewards of health data. IRBs and RECs sit at heart of this process because in many jurisdictions they have the capacity to grant consent waivers when research is judged to be of (...) particular value. However, several different terms are used to refer to this value, indicating a lack of conceptual clarity regarding the appropriate test for access to health data for research without consent. In this paper we do three things. First we describe the current confusion and instability in terminology relating to public interest in the context of consent waivers. Second we argue for harmonisation of terminology on the grounds of clarity, transparency and consistency. Third we argue that the term ‘public interest’ best reflects the normative work required to justify consent waivers because it is the broadest of the competing terms. ‘Public interest’ contains within its scope positive and negative implications of a study, as well as welfare, justice and rights considerations. In making this argument, we explain the normative basis for consent waivers, and provide a starting place for further discussion about the precise conditions in which a given study can be said to advance the public interest. Ipsos MORI study found that: … the public would be broadly happy with administrative data linking for research projects provided Those projects have social value, broadly defined. Data are de-identified. Data are kept secure. Businesses are not able to access the data for profit. (shrink)

There is an alleged tension between undue inducement and exploitation in research trials. This paper considers claims that increasing the benefits to research subjects enrolled in international, externally-sponsored clinical trials should be avoided on the grounds that it may result in the undue inducement of research subjects. This article contributes to the debate about exploitation versus undue inducement by introducing an analysis of the available empirical research into research participants' motivations and the influence of payments on research subjects' behaviour and (...) risk assessment. Admittedly, the available research in this field is limited, but the research that has been conducted suggests that financial rewards do not distort research subjects' behaviour or blind them to the risks involved with research. Therefore, I conclude that research sponsors should prioritise the prevention of exploitation in international research by providing greater benefits to research participants. (edited). (shrink)

When we evaluate artworks, we often point to what an artist could have done or what a work could have been in order to say something about the work as it actually is. Call this counterfactual reasoning in art criticism. On my account, counterfactual claims about artworks involve comparative aesthetic judgments between actual artworks and hypothetical variations of those works. The practice of imagining what an artwork could have been is critically useful because it can help us understand how artworks (...) achieve specific aesthetic effects. I conclude by responding to an objection to my account on the basis that it violates the widely accepted acquaintance principle in aesthetics, on which aesthetic judgments must be based on firsthand perceptual encounters with their objects. (shrink)

Locke’s theory of consciousness is often appropriated as a forerunner of present-day Higher-Order Perception (HOP) theories, but not much is said about it beyond that. We offer an interpretation of Locke’s account of consciousness that portrays it as crucially different from current-day HOP theory, both in detail and in spirit. In this paper, it is argued that there are good historical and philosophical reasons to attribute to Locke the view not that conscious states are accompanied by higher-order perceptions, but rather (...) that conscious states constitute perceptions of themselves. (shrink)

In their response to ‘Public interest in health data research: laying out the conceptual groundwork’, Grewal and Newson critique us for inattention to the law and putting forward an impracticably broad conceptual understanding of public interest. While we agree more work is needed to generate a workable framework for Institutional Review Boards/Research Ethics Committees, we would contend that this should be grounded on a broad conception of public interest. This broadness facilitates regulatory agility, and is already reflected by some current (...) frameworks such as that found in the guidelines approved under Australia’s Privacy Act. It remains unclear which elements of our broad account Grewal and Newson would reject, or indeed where the substantive disagreement with our position lies. (shrink)

Moving away from the strong body of critique of pervasive ‘bad data’ practices by both governments and private actors in the globalized digital economy, this book aims to paint an alternative, more optimistic but still pragmatic picture of the datafied future. The authors examine and propose ‘good data’ practices, values and principles from an interdisciplinary, international perspective. From ideas of data sovereignty and justice, to manifestos for change and calls for activism, this collection opens a multifaceted conversation on the kinds (...) of futures we want to see, and presents concrete steps on how we can start realizing good data in practice. (shrink)

Scientists and historians have often presumed that the divide between biochemistry and molecular biology is fundamentally epistemological.100 The historiography of molecular biology as promulgated by Max Delbrück's phage disciples similarly emphasizes inherent differences between the archaic tradition of biochemistry and the approach of phage geneticists, the ur molecular biologists. A historical analysis of the development of both disciplines at Berkeley mitigates against accepting predestined differences, and underscores the similarities between the postwar development of biochemistry and the emergence of molecular biology (...) as a university discipline. Stanley's image of postwar biochemistry, with its focus on viruses as key experimental systems, and its preference for following macromolecular structure over metabolism pathways, traced the outline of molecular biology in 1950.Changes in the postwar political economy of research universities enabled the proliferation of disciplines such as microbiology, biochemistry, biophysics, immunology, and molecular biology in universities rather than in medical schools and agricultural colleges. These disciplines were predominantly concerned with investigating life at the subcellular level-research that during the 1930s had often entailed collaboration with physicists and chemists. The interdisciplinary efforts of the 1930s (many fostered by the Rockefeller Foundation) yielded a host of new tools and reagents that were standardized and mass-produced for laboratories after World War II. This commercial infrastructure enabled “basic” researchers in biochemistry and molecular biology in the 1950s and 1960s to become more independent from physics and chemistry (although they were practicing a physicochemical biology), as well as from the agricultural and medical schools that had previously housed or sponsored such research. In turn, the disciplines increasingly required their practitioners to have specialized graduate training, rather than admitting interlopers from the physical sciences.These general transitions toward greater autonomy for biochemistry and allied disciplines should not mask the important particularities of these developments on each campus. At the University of Caliornia at Berkeley, agriculture had provided, with medicine, significant sponsorship for biochemistry. The proximity of Lawrence and his cyclotrons supported the early development of Berkeley as a center for the biological uses of radioisotopes, particularly in studies of metabolism and photosynthesis. Stanley arrived to establish his department and virus institute before large-scale federal funding of biomedical research was in place, and he courted the state of California for substantial backing by promising both national prominence in the life sciences and virus research pertinent to agriculture and public health. Stanley's venture benefited significantly from the expansion of California's economy after World War II, and his mobilization against viral diseases resonated with the concerns of the Cold War, which fueled the state's rapid growth. The scientific prominence of contemporary developments at Caltech and Stanford invites the historical examination of the significance of postwar biochemistry and molecular biology within the political and cultural economy of the Golden State.In 1950, Stanley presented a persuasive picture of the power of biochemistry to refurbish life science at Berkeley while answering fundamental questions about life and infection. In the words of one Rockefeller Foundation officer,There seems little doubt in [my] mind that as a personality Stanley will be well able to dominate the other personalities on the Berkeley campus and will be able to drive his dream through to completion, which, incidentally, leaves Dr. Hubert [sic] Evans and the whole ineffective Life Sciences building in the somewhat peculiar position of being by-passed by much of the truly modern biochemistry and biophysics research that will be carried out at Berkeley. Furthermore, it seems likely that Dr. S's show will throw Dr. John Lawrence's Biophysics Department strongly in the shade both figuratively and literally, but should make the University of California pre-eminent not only in physics but in biochemistry as well.101Stanley, Sproul, Weaver, and this officer (William Loomis) all testified to a perceptible postwar opportunity to capitalize on public support for biological research that relied on the technologies from physics and chemistry without being captive to them, and that addressed issues of medicine and agriculture without being institutionally subservient. What is striking, given the expectation by many that Stanley would ‘be able to drive his dream through to completion,” was that in fact he did not. Biochemists who had succeeded in making their expertise valued in specialized niches were resistant to giving up their affiliations to joint Stanley's “liberated” organization. Stanley's failure was not simply due to institutional factors: researchers as well as Rockefeller Foundation officers faulted him for his lack of scientific imagination, which made it difficult for him to gain credibility in leading the field. Moreover, many biochemists did not share Stanley's commitment to viruses as the key material for the “new biochemistry.”In the end, Stanley's free-standing department did become a first-rate department of biochemistry, but only after freeing itself from Stanley's leadership and his single-minded devotion to viruses. Nonetheless, the falling-out with the Berkeley biochemists was rapidly followed by the establishment of a Department of Molecular Biology, attesting to the unabating economic and institutional possibilities for an authoritative “general biology” (or two, for that matter) to take hold. In each case, following Stanley's dream sheds light on how the possible and the real shaped the (re)formation of biochemistry and molecular biology as postwar life sciences. (shrink)

We single out an alternative, strict interpretation of the Einstein-Podolsky-Rosen criterion of reality, and identify the implied extensions of quantum correlations. Then we prove that the theorem of Bell, and the non-locality theorems without inequalities, fail if the new extensions are adopted. Therefore, these theorems can be interpreted as arguments against the wide interpretation of the criterion of reality rather than as a violation of locality.

There is increasing global pressure to ensure that pregnant women are responsibly and safely included in clinical research in order to improve the evidence base that underpins healthcare delivery during pregnancy. One supposed barrier to inclusion is the assumption that pregnant women will be reluctant to participate in research. There is however very little empirical research investigating the views of pregnant women. Their perspective on the benefits, burdens and risks of research is a crucial component to ensuring effective recruitment. The (...) Research In Pregnancy Ethics study set out to ascertain the views of pregnant women about research participation using an inductive thematic analysis. We conducted semi-structured interviews with 20 women who had participated in a double-blind randomised placebo controlled trial in Wellington while pregnant. Our results show that at least some pregnant women recognise the value and importance of research during pregnancy. The women we interviewed were deeply invested in the research process and outcomes. Key motivations for participating were altruism, playing a valuable civic role and the importance of research. The main perceived burdens related to inconvenience and time commitment. For some women, possible randomization to the placebo arm was regarded as a burden or disadvantage. (shrink)

Resumen: Esta exposición intenta comprender las formas culturales de comunicación y fijación mnémica en una narración específica que Davi Kopenawa, chamán Yanomami, expone al antropólogo Bruce Albert, en virtud de los modos de existencia amazónicos, refiriéndose en particular a la intensidad de los espíritus selváticos y a la experiencia chamánica con los mundos espirituales. En el contexto de una extensión vegetal dispersa y sobresaliente, afirmamos una sociabilidad cotidiana en el marco de una “ética respetuosa o amorosa” entre todas las formas (...) de vida, expresada estéticamente en formas significantes y transportadoras de emociones desarrolladas por la cosmología amazónica. Para ello utilizamos las nociones que Aby Warburg emplea en su estudio de la cultura de las imágenes, en tanto curso por el que estas pueden entenderse como organismos vivientes susceptibles a transformación, preservando su propia biología en la trasmisión codificada de la memoria.: This exhibition tries to understand the cultural forms of communication and mnemic fixation in a specific narrative that Davi Kopenawa, Yanomami shaman, exposes to the anthropologist Bruce Albert, by virtue of Amazonian modes of existence, especially referring to the intensity of jungle spirits and experience Shamanic with spiritual worlds. In the context of a dispersed and outstanding plant extension, we affirm a daily sociability within the framework of a “respectful or loving ethic” among all life forms, aesthetically expressed in significant and transporting forms of emotions developed by Amazonian cosmology. For this we use the notions that Aby Warburg uses in his study of the culture of images, as a course by which they can be understood as living organisms susceptible to transformation, preserving their own biology in the coded transmission of memory. (shrink)

Scientific realism is a thesis about the success of science. Most traditionally: science has been so successful at prediction and guiding action because its best theories are true (or approximately true or increasing in their degree of truth). If science is in the business of doing its best to generate true theories, then we should turn to those theories for explanatory knowledge, predictions, and guidance of our actions and decisions. Views that are popular in contemporary philosophy of science about scientific (...) modeling and the centrality of idealization create several challenges for this traditional form of scientific realism. Yet the basic idea behind scientific realism that science has been and will continue to be epistemically successful is deeply appealing. This chapter explores the challenges posed by idealization and scientific modeling to motivate a scientific realism fully divorced from the idea that science is in the business of generating true theories. On the resulting view, the objects of scientific knowledge are causal patterns, so this knowledge only ever provides partial, simplified accounts of a complex reality. This variety of selective realism better accommodates the nature of our present-day scientific successes and offers an interpretation of scientific progress that resists the antirealist’s pessimism. (shrink)

In his chapter in this volume, Christopher Pincock develops an argument for scientific realism based on scientific understanding, and he argues that Giere’s (2006) and my (2017, 2020) commitment to the context-dependence of scientific understanding or knowledge renders our views unable to account for an essential step in how scientists come to know. Meanwhile, in my chapter in this volume, I motivate a view that I call "causal pattern realism." In this response to Pincock's chapter, I will sketch a revised (...) version of Pincock’s argument for realism that is consistent with causal pattern realism. Then I will respond to Pincock’s concern that the context-dependence of understanding on my view would interfere with the scientific community’s ability to extrapolate from specific experimental and observational contexts as needed to develop knowledge. My goal is not to convince anyone to be a causal pattern realist but rather to create the space for such a view, taking into account the concerns motivating Pincock. (shrink)

What leads people to believe in conspiracy theories? In this paper, we explore the possibility that people might be drawn towards conspiracy theories because believing in them might satisfy certain existential needs and help people find meaning in their life. Through two studies (N = 289 and 287 after exclusion), we found that par­ ticipants higher in the need and search for meaning were more likely to believe in conspiracy theories. This relationship was not moderated by participants' feelings of control. (...) We also found that believing in conspiracy theories was associated with more presence of meaning (Study 1), and more precisely with a heightened feeling of mattering in the grand scheme of things (Study 2). Additionally, we found that participants were more likely to endorse conspiracy theories that left them more agency and allowed them the possibility to make a difference. Overall, we argue that our results suggest that people might sometimes be drawn towards conspiracy theories because they allow them to feel as if they can make a difference and have a positive impact on the world, and thus that conspiracy theories can be used as tools to satisfy existential needs. (shrink)

En este artículo se desarrolla una reflexión acerca del suicidio hetero-referido o no-personal. Se lo analiza en tanto forma de voluntad e instrumento de presión política que tensiona críticamente los modos en que se organiza la vida en nuestras sociedades. Se indaga en el potencial de contra-soberanía que supone en tanto intenta desactivar el poder al que se enfrenta. Se tematiza cierta ética de la pasividad que surge en esta acción y se examina la lógica que recorre el acto de (...) darse muerte. Finalmente, el artículo contribuye a complejizar el debate en torno al suicidio hetero-referido en tanto se destacan sus límites y potencialidades, así como las paradojas que plantean a nuestras democracias liberales las diversas demandas de grupos minorizados. (shrink)

We agree with the author's working model, but we suggest that (a) the classical distinction between fast and slow processes as separable processes can be softened, and (b) human performance might result from an interplay between fast and slow processing and these processes may be mediated by systems that evolve to satisfy the need for operation in a complex environment.

This is a report on the Doctoral Consortium co-located with the 17th International Conference on Artificial Intelligence and Law in Montreal.

The Pathways Commission calls on accounting educators to develop students’ skills in ethical judgment and decision making, but there is uncertainty about how best to accomplish this task. We test if participation in Volunteer Income Tax Assistance programs is positively associated with students’ ethical judgment and decision making. Using a questionnaire administered to students participating in VITA and students not participating in VITA at seven universities, we form multiple measures of students’ ethical judgment and students’ ethical decision making. Regression analyses (...) reveal that VITA participation is positively and significantly associated with ethical judgment and, in certain cases, is also positively and significantly associated with ethical decision making, even after controlling for other determinants including completion of ethics courses. We conclude that VITA programs can be effective educational interventions to promote ethical development in students. Our study adds to the growing literature on positive student outcomes associated with VITA participation, provides empirical evidence to support the tenets of situated learning and service-learning theories, and contributes to the development of effective ethics education. (shrink)