Four ethical values — maximizing benefits, treating equally, promoting and rewarding instrumental value, and giving priority to the worst off — yield six specific recommendations for allocating medical resources in the Covid-19 pandemic: maximize benefits; prioritize health workers; do not allocate on a first-come, first-served basis; be responsive to evidence; recognize research participation; and apply the same principles to all Covid-19 and non–Covid-19 patients.

According to an adequacy-for-purpose view, models should be assessed with respect to their adequacy or fitness for particular purposes. Such a view has been advocated by scientists and philosophers...

A number of recent discussions comparing computer simulation and traditional experimentation have focused on the significance of “materiality.” I challenge several claims emerging from this work and suggest that computer simulation studies are material experiments in a straightforward sense. After discussing some of the implications of this material status for the epistemology of computer simulation, I consider the extent to which materiality (in a particular sense) is important when it comes to making justified inferences about target systems on the basis (...) of experimental results. (shrink)

We critically engage two traditional views of scientific data and outline a novel philosophical view that we call the pragmatic-representational view of data. On the PR view, data are representations that are the product of a process of inquiry, and they should be evaluated in terms of their adequacy or fitness for particular purposes. Some important implications of the PR view for data assessment, related to misrepresentation, context-sensitivity, and complementary use, are highlighted. The PR view provides insight into the common (...) but little-discussed practices of iteratively reusing and repurposing data, which result in many datasets’ having a phylogeny—an origin and complex evolutionary history—that is relevant to their evaluation and future use. We relate these insights to the open-data and data-rescue movements, and highlight several future avenues of research that build on the PR view of data. (shrink)

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

In this paper we discuss ethical implications of the use of mobile phone apps in the control of the COVID-19 pandemic. Contact tracing is a well-established feature of public health practice during infectious disease outbreaks and epidemics. However, the high proportion of pre-symptomatic transmission in COVID-19 means that standard contact tracing methods are too slow to stop the progression of infection through the population. To address this problem, many countries around the world have deployed or are developing mobile phone apps (...) capable of supporting instantaneous contact tracing. Informed by the on-going mapping of ‘proximity events’ these apps are intended both to inform public health policy and to provide alerts to individuals who have been in contact with a person with the infection. The proposed use of mobile phone data for ‘intelligent physical distancing’ in such contexts raises a number of important ethical questions. In our paper, we outline some ethical considerations that need to be addressed in any deployment of this kind of approach as part of a multidimensional public health response. We also, briefly, explore the implications for its use in future infectious disease outbreaks. (shrink)

This article explores some of the roles of computer simulation in measurement. A model-based view of measurement is adopted and three types of measurement—direct, derived, and complex—are distinguished. It is argued that while computer simulations on their own are not measurement processes, in principle they can be embedded in direct, derived, and complex measurement practices in such a way that simulation results constitute measurement outcomes. Atmospheric data assimilation is then considered as a case study. This practice, which involves combining information (...) from conventional observations and simulation-based forecasts, is characterized as a complex measuring practice that is still under development. The case study reveals challenges that are likely to resurface in other measuring practices that embed computer simulation. It is also noted that some practices that embed simulation are difficult to classify; they suggest a fuzzy boundary between measurement and non-measurement. 1 Introduction2 A Contemporary View of Measurement3 Three Types of Measurement4 Can Computer Simulations Measure Real-World Target Systems?5 Case Study: Atmospheric Data Assimilation5.1 Why data assimilation?5.2 A complex measuring practice under development5.3 Epistemic iteration6 The Boundaries of Measurement7 Epistemology, Not Terminology. (shrink)

We call attention to an underappreciated way in which non-epistemic values influence evidence evaluation in science. Our argument draws upon some well-known features of scientific modeling. We show that, when scientific models stand in for background knowledge in Bayesian and other probabilistic methods for evidence evaluation, conclusions can be influenced by the non-epistemic values that shaped the setting of priorities in model development. Moreover, it is often infeasible to correct for this influence. We further suggest that, while this value influence (...) is not particularly prone to the problem of wishful thinking, it could have problematic non-epistemic consequences in some cases. (shrink)

This article identifies conditions under which robust predictive modeling results have special epistemic significance---related to truth, confidence, and security---and considers whether those conditions hold in the context of present-day climate modeling. The findings are disappointing. When today’s climate models agree that an interesting hypothesis about future climate change is true, it cannot be inferred---via the arguments considered here anyway---that the hypothesis is likely to be true or that scientists’ confidence in the hypothesis should be significantly increased or that a claim (...) to have evidence for the hypothesis is now more secure. (shrink)

To study Earth’s climate, scientists now use a variety of computer simulation models. These models disagree in some of their assumptions about the climate system, yet they are used together as complementary resources for investigating future climatic change. This paper examines and defends this use of incompatible models. I argue that climate model pluralism results both from uncertainty concerning how to best represent the climate system and from difficulties faced in evaluating the relative merits of complex models. I describe how (...) incompatible climate models are used together in ‘multi-model ensembles’ and explain why this practice is reasonable, given scientists’ inability to identify a ‘best’ model for predicting future climate. Finally, I characterize climate model pluralism as involving both an ontic competitive pluralism and a pragmatic integrative pluralism. (shrink)

The COVID-19 pandemic revealed numerous weaknesses in pandemic preparedness and response, including underfunding, inadequate surveillance, and inequitable distribution of countermeasures. To overcome these weaknesses for future pandemics, WHO released a zero draft of a pandemic treaty in February, 2023, and subsequently a revised bureau's text in May, 2023. COVID-19 made clear that pandemic prevention, preparedness, and response reflect choices and value judgements. These decisions are therefore not a purely scientific or technical exercise, but are fundamentally grounded in ethics. The latest (...) treaty draft reflects these ethical considerations by including a section entitled Guiding Principles and Approaches. Most of these principles are ethical—they establish core values that undergird the treaty. Unfortunately, the treaty draft's set of principles are numerous, overlapping, and show inadequate coherence and consistency. We propose two improvements to this section of the draft pandemic treaty. First, key guiding ethical principles should be clearer and more precise than they currently are. Second, the link between ethical principles and policy implementation should be clearly established and define boundaries on acceptable interpretation, ensuring that signatories abide by these principles. (shrink)

Lloyd (2009) contends that climate models are confirmed by various instances of fit between their output and observational data. The present paper argues that what these instances of fit might confirm are not climate models themselves, but rather hypotheses about the adequacy of climate models for particular purposes. This required shift in thinking—from confirming climate models to confirming their adequacy-for-purpose—may sound trivial, but it is shown to complicate the evaluation of climate models considerably, both in principle and in practice.

Philosophers continue to debate both the actual and the ideal roles of values in science. Recently, Eric Winsberg has offered a novel, model-based challenge to those who argue that the internal workings of science can and should be kept free from the influence of social values. He contends that model-based assignments of probability to hypotheses about future climate change are unavoidably influenced by social values. I raise two objections to Winsberg’s argument, neither of which can wholly undermine its conclusion but (...) each of which suggests that his argument exaggerates the influence of social values on estimates of uncertainty in climate prediction. I then show how a more traditional challenge to the value-free ideal seems tailor-made for the climate context. (shrink)

BackgroundGenome-wide association studies (GWAS) provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania.DiscussionWe explore ethical (...) issues in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations.SummaryMany ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects. (shrink)

A comprehensive and systematic reconstruction of the philosophy of Charles S. Peirce, perhaps America's most far-ranging and original philosopher, which reveals the unity of his complex and influential body of thought. We are still in the early stages of understanding the thought of C. S. Peirce (1839-1914). Although much good work has been done in isolated areas, relatively little considers the Peircean system as a whole. Peirce made it his life's work to construct a scientifically sophisticated and logically rigorous philosophical (...) system, culminating in a realist epistemology and a metaphysical theory ("synechism") that postulates the connectedness of all things in a universal evolutionary process. In The Continuity of Peirce's Thought, Kelly Parker shows how the principle of continuity functions in phenomenology and semeiotics, the two most novel and important of Peirce's philosophical sciences, which mediate between mathematics and metaphysics. Parker argues that Peirce's concept of continuity is the central organizing theme of the entire Peircean philosophical corpus. He explains how Peirce's unique conception of the mathematical continuum shapes the broad sweep of his thought, extending from mathematics to metaphysics and in religion. He thus provides a convenient and useful overview of Peirce's philosophical system, situating it within the history of ideas and mapping interconnections among the diverse areas of Peirce's work. This challenging yet helpful book adopts an innovative approach to achieve the ambitious goal of more fully understanding the interrelationship of all the elements in the entire corpus of Peirce's writings. Given Peirce's importance in fields ranging from philosophy to mathematics to literary and cultural studies, this new book should appeal to all who seek a fuller, unified understanding of the career and overarching contributions of Peirce, one of the key figures in the American philosophical tradition. (shrink)

Realizing the benefits of translating psychiatric genomics research into mental health care is not straightforward. The translation process gives rise to ethical challenges that are distinctive from challenges posed within psychiatric genomics research itself, or that form part of the delivery of clinical psychiatric genetics services. This article outlines and considers three distinct ethical concerns posed by the process of translating genomic research into frontline psychiatric practice and policy making. First, the genetic essentialism that is commonly associated with the genomics (...) revolution in health care might inadvertently exacerbate stigma towards people with mental disorders. Secondly, the promises of genomic medicine advance a narrative of individual empowerment. This narrative could promote a fatalism towards patients' biology in ways that function in practice to undermine patients' agency and autonomy, or, alternatively, a heightened sense of subjective genetic responsibility could become embedded within mental health services that leads to psychosocial therapeutic approaches and the clinician-patient therapeutic alliance being undermined. Finally, adopting a genomics-focused approach to public mental health risks shifting attention away from the complex causal relationships between inequitable socio-economic, political, and cultural structures and negative mental health outcomes. The article concludes by outlining a number of potential pathways for future ethics research that emphasizes the importance of examining appropriate translation mechanisms, the complementarity between genetic and psychosocial models of mental disorder, the implications of genomic information for the clinician-patient relationship, and funding priorities and resource allocation decision making in mental health. (shrink)

Recent work has defended “Euclidean” theories of set size, in which Cantor’s Principle (two sets have equally many elements if and only if there is a one-to-one correspondence between them) is abandoned in favor of the Part-Whole Principle (if A is a proper subset of B then A is smaller than B). It has also been suggested that Gödel’s argument for the unique correctness of Cantor’s Principle is inadequate. Here we see from simple examples, not that Euclidean theories of set (...) size are wrong, but that they must be either very weak and narrow or largely arbitrary and misleading. (shrink)

Can computer simulation results be evidence for hypotheses about real-world systems and phenomena? If so, what sort of evidence? Can we gain genuinely new knowledge of the world via simulation? I argue that evidence from computer simulation is aptly characterized as higher-order evidence: it is evidence that other evidence regarding a hypothesis about the world has been collected. Insofar as particular epistemic agents do not have this other evidence, it is possible that they will gain genuinely new knowledge of the (...) world via simulation. I illustrate with examples inspired by uses of simulation in meteorology and astrophysics. (shrink)

Newton published his deduction of universal gravity in Principia (first ed., 1687). To establish the universality (the particle-to-particle nature) of gravity, Newton must establish the additivity of mass. I call ‘additivity’ the property a body's quantity of matter has just in case, if gravitational force is proportional to that quantity, the force can be taken to be the sum of forces proportional to each particle's quantity of matter. Newton's argument for additivity is obscure. I analyze and assess manuscript versions of (...) Newton's initial argument within his initial deduction, dating from early 1685. Newton's strategy depends on distinguishing two quantities of matter, which I call ‘active’ and ‘passive’, by how they are measured. These measurement procedures frame conditions on the additivity of each quantity so measured. While Newton has direct evidence for the additivity of passive quantity of matter, he does not for that of the active quantity. Instead, he tries to infer the latter from the former via conceptual analyses of the third law of motion grounded largely on analogies to magnetic attractions. The conditions needed to establish passive additivity frustrate Newton's attempted inference to active additivity. (shrink)

A probability distribution is regular if it does not assign probability zero to any possible event. While some hold that probabilities should always be regular, three counter-arguments have been posed based on examples where, if regularity holds, then perfectly similar events must have different probabilities. Howson and Benci et al. have raised technical objections to these symmetry arguments, but we see here that their objections fail. Howson says that Williamson’s “isomorphic” events are not in fact isomorphic, but Howson is speaking (...) of set-theoretic representations of events in a probability model. While those sets are not isomorphic, Williamson’s physical events are, in the relevant sense. Benci et al. claim that all three arguments rest on a conflation of different models, but they do not. They are founded on the premise that similar events should have the same probability in the same model, or in one case, on the assumption that a single rotation-invariant distribution is possible. Having failed to refute the symmetry arguments on such technical grounds, one could deny their implicit premises, which is a heavy cost, or adopt varying degrees of instrumentalism or pluralism about regularity, but that would not serve the project of accurately modelling chances. (shrink)

This paper critically examines Weisberg’s weighted feature matching account of model-world similarity. A number of concerns are raised, including that Weisberg provides an account of what underlies scientific judgments of relative similarity, when what is desired is an account of the sorts of model-target similarities that are necessary or sufficient for achieving particular types of modeling goal. Other concerns relate to the details of the account, in particular to the content of feature sets, the nature of shared features and the (...) assumed independence of feature weightings. (shrink)

Simulation-based weather and climate prediction now involves the use of methods that reflect a deep concern with uncertainty. These methods, known as ensemble prediction methods, produce multiple simulations for predictive periods of interest, using different initial conditions, parameter values and/or model structures. This paper provides a non-technical overview of current ensemble methods and considers how the results of studies employing these methods should be interpreted, paying special attention to probabilistic interpretations. A key conclusion is that, while complicated inductive arguments might (...) be given for the trustworthiness of probabilistic weather forecasts obtained from ensemble studies, analogous arguments are out of reach in the case of long-term climate prediction. In light of this, the paper considers how predictive uncertainty should be conveyed to decision makers. (shrink)

The National Health Service (NHS) was the first healthcare system globally to declare ambitions to become net carbon zero. To achieve this, a shift away from metered-dose inhalers which contain powerful greenhouse gases is necessary. Many patients can use dry powder inhalers which do not contain greenhouse gases and are equally effective at managing respiratory disease. This paper discusses the ethical issues that arise as the NHS attempts to mitigate climate change. Two ethical issues that pose a barrier to moving (...) away from metered-dose inhalers are considered: patients who decline an inhaler with a smaller carbon footprint and increased cost. I argue that while a patient is not morally justified in refusing a more environmentally sustainable inhaler due to the expected harms, a doctor may still prescribe a metered-dose inhaler if they believe that switching without consent might undermine trust or substantially worsen the patient’s health. Turning to cost, I argue that the imperative to combat climate change means the NHS should accept small increased financial costs for lower carbon inhalers, even though this provides no additional direct benefit for the patient. I then go on to consider the implications of the preceding analysis for policy and practice. I argue for a policy that minimises the impact of inhalers on the climate by advocating for a principle of environmental prescribing and explore decision-making in practice. While the arguments here pertain primarily to inhalers, the discussion has broader implications for debates around healthcare’s responsibility to be environmentally sustainable. (shrink)

Today’s most sophisticated simulation studies of future climate employ not just one climate model but a number of models. I explain why this “ensemble” approach has been adopted—namely, as a means of taking account of uncertainty—and why a comprehensive investigation of uncertainty remains elusive. I then defend a middle ground between two camps in an ongoing debate over the transformation of ensemble results into probabilistic predictions of climate change, highlighting requirements that I refer to as ownership, justification, and robustness.

A probability distribution is regular if no possible event is assigned probability zero. While some hold that probabilities should always be regular, three counter-arguments have been posed based on examples where, if regularity holds, then perfectly similar events must have different probabilities. Howson (2017) and Benci et al. (2016) have raised technical objections to these symmetry arguments, but we see here that their objections fail. Howson says that Williamson’s (2007) “isomorphic” events are not in fact isomorphic, but Howson is speaking (...) of set-theoretic representations of events in a probability model. While those sets are not isomorphic, Williamson’s physical events are, in the relevant sense. Benci et al. claim that all three arguments rest on a conflation of different models, but they do not. They are founded on the premise that similar events should have the same probability in the same model, or in one case, on the assumption that a single rotation-invariant distribution is possible. Having failed to refute the symmetry arguments on such technical grounds, one could deny their implicit premises, which is a heavy cost, or adopt varying degrees of instrumentalism or pluralism about regularity, but that would not serve the project of accurately modelling chances. (shrink)

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

This paper provides a systematic account of how artificial intelligence (AI) technologies could harm nonhuman animals and explains why animal harms, often neglected in AI ethics, should be better recognised. After giving reasons for caring about animals and outlining the nature of animal harm, interests, and wellbeing, the paper develops a comprehensive ‘harms framework’ which draws on scientist David Fraser’s influential mapping of human activities that impact on sentient animals. The harms framework is fleshed out with examples inspired by both (...) scholarly literature and media reports. This systematic account and framework should help inform ethical analyses of AI’s impact on animals and serve as a comprehensive and clear basis for the development and regulation of AI technologies to prevent and mitigate harm to nonhumans. (shrink)

Julian Savulescu argues for two principles of reproductive ethics: reproductive autonomy and procreative beneficence, where the principle of procreative beneficence is conceptualised in terms of a duty to have the child, of the possible children that could be had, who will have the best opportunity of the best life. Were it to be accepted, this principle would have significant implications for the ethics of reproductive choice and, in particular, for the use of prenatal testing and other reproductive technologies for the (...) avoidance of disability, and for enhancement. In this paper, it is argued that this principle should be rejected, and it is concluded that while potential parents do have important obligations in relation to the foreseeable lives of their future children, these obligations are not best captured in terms of a duty to have the child with the best opportunity of the best life. (shrink)

After showing how Deborah Mayo’s error-statistical philosophy of science might be applied to address important questions about the evidential status of computer simulation results, I argue that an error-statistical perspective offers an interesting new way of thinking about computer simulation models and has the potential to significantly improve the practice of simulation model evaluation. Though intended primarily as a contribution to the epistemology of simulation, the analysis also serves to fill in details of Mayo’s epistemology of experiment.

In a fair, infinite lottery, it is possible to conclude that drawing a number divisible by four is strictly less likely than drawing an even number; and, with apparently equal cogency, that drawing a number divisible by four is equally as likely as drawing an even number.

The importance of communities in strengthening the ethics of international collaborative research is increasingly highlighted, but there has been much debate about the meaning of the term ‘community’ and its specific normative contribution. We argue that ‘community’ is a contingent concept that plays an important normative role in research through the existence of morally significant interplay between notions of community and individuality. We draw on experience of community engagement in rural Kenya to illustrate two aspects of this interplay: (i) that (...) taking individual informed consent seriously involves understanding and addressing the influence of communities in which individuals’ lives are embedded; (ii) that individual participation can generate risks and benefits for communities as part of the wider implications of research. We further argue that the contingent nature of a community means that defining boundaries is generally a normative process itself, with ethical implications. Community engagement supports the enactment of normative roles; building mutual understanding and trust between researchers and community members have been important goals in Kilifi, requiring a broad range of approaches. Ethical dilemmas are continuously generated as part of these engagement activities, including the risks of perverse outcomes related to existing social relations in communities and conditions of ‘half knowing’ intrinsic to processes of developing new understandings. (shrink)

Increasingly there are calls for climate services to be “co-produced” with users, taking into account not only the basic information needs of users but also their value systems and decision contexts. What does this mean in practice? One way that user values can be incorporated into climate services is in the management of inductive risk. This involves understanding which errors in climate service products would have particularly negative consequences from the users’ perspective (e.g., underestimating rather than overestimating the change in (...) an impact variable) and then prioritizing the avoidance of those errors. This essay shows how inductive risk could be managed in climate services in ways that serve user values and argues that there are both ethical and practical reasons in favor of doing so. (shrink)

In recent years, there has been an increase in the establishment of biobanks for genetic and genomic studies around the globe. One example of this is the Human Heredity and Health in Africa Initiative (H3Africa), which has established biobanks in the sub‐region to facilitate future indigenous genomic studies. The concept of ‘broad consent’ has been proposed as a mechanism to enable potential research participants in biobanks to give permission for their samples to be used in future research studies. However, questions (...) remain about the acceptability of this model of consent. Drawing on findings from empirical research about the role of trust in decision‐making, we argue that an account of entrustment may be an appropriate way of addressing current challenges of seeking consent for biobank research in Africa. We propose a set of key points to consider that can support the proposed entrustment framework. (shrink)

This study investigated relationships between inter-class variations in paranormal experience and executive functions. A sample of 516 adults completed self-report measures assessing personal encounter-based paranormal occurrences, executive functions together with Emotion Regulation and Belief in the Paranormal. Paranormal belief served as a measure of convergent validity for experience-based phenomena. Latent profile analysis combined experience-based indices into four classes based on sample subpopulation scores. Multivariate analysis of variance then examined interclass differences. Results revealed that breadth of paranormal experience was associated with (...) higher levels of executive functioning difficulties for General Executive Function, Working Memory, Decision Making, and Belief in the Paranormal. On the Everyday Memory Questionnaire, scores differed on Attention Tracking and Factor 3, but not Retrieval. In the case of the Emotion Regulation Scale, class scores varied on Expressive Suppression, however, no difference was evident on Cognitive Reappraisal. Overall, inter-class comparisons identified subtle differences in executive functions related to experience. Since the present study was exploratory, sampled only a limited subset of executive functions, and used subjective, self-report measures, further research is necessary to confirm these outcomes. This should employ objective tests and include a broader range of executive functions. (shrink)

ABSTRACT Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics (...) committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants’ needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study. (shrink)

Allan Franklin has identified a number of strategies that scientists use to build confidence in experimental results. This paper shows that Franklin's strategies have direct analogues in the context of computer simulation and then suggests that one of his strategies—the so-called 'Sherlock Holmes' strategy—deserves a privileged place within the epistemologies of experiment and simulation. In particular, it is argued that while the successful application of even several of Franklin's other strategies (or their analogues in simulation) may not be sufficient for (...) justified belief in results, the successful application of a slightly elaborated version of the Sherlock Holmes strategy is sufficient. (shrink)

Recently a number of scientists have proposed substantial changes to the practice of climate modeling, though they disagree over what those changes should be. We provide an overview and critical examination of three leading proposals: the unified approach, the hierarchy approach and the pluralist approach. The unified approach calls for an accelerated development of high-resolution models within a seamless prediction framework. The hierarchy approach calls for more attention to the development and systematic study of hierarchies of related models, with the (...) aim of advancing understanding. The pluralist approach calls for greater diversity in modeling efforts, including, on some of its variants, more attention to empirical modeling. After identifying some of the scientific and institutional challenges faced by these proposals, we consider their expected gains and costs, relative to a business-as-usual modeling scenario.We find the proposals to be complementary, having valuable synergies. But since resource limitations make it unlikely that all three will be pursued, we offer some reflections on more limited changes in climate modeling that seem well within reach and that can be expected to yield substantial benefits. (shrink)

As social media becomes increasingly popular, human subjects researchers are able to use these platforms to locate, track, and communicate with study participants, thereby increasing participant retention and the generalizability and validity of research. The use of social media; however, raises novel ethical and regulatory issues that have received limited attention in the literature and federal regulations. We review research ethics and regulations and outline the implications for maintaining participant privacy, respecting participant autonomy, and promoting researcher transparency when using social (...) media to locate and track participants. We offer a rubric that can be used in future studies to determine ethical and regulation-consistent use of social media platforms and illustrate the rubric using our study team’s experience with Facebook. We also offer recommendations for both researchers and institutional review boards that emphasize the importance of well-described procedures for social media use as... (shrink)

A clinical ethics consultant may, at times, be called upon to make independent substantive moral judgments and then offer justifications for those judgments. A CEC does not act unprofessionally by utilizing background beliefs that are religious in nature to justify those judgments. It is important, however, for a CEC to make such judgments authentically and, when asked, to offer up one’s reasons for why one believes the judgment is true in a transparent fashion.