Volume 23, Issue 3-4, November - December 2024, Page 251-263.

Volume 23, Issue 3-4, November - December 2024, Page 245-250.

Although continued investments in nanotechnology are made, atomically precise manufacturing (APM) to date is still regarded as speculative technology. APM, also known as molecular manufacturing, is a token example of a converging technology, has great potential to impact and be affected by other emerging technologies, such as artificial intelligence, biotechnology, and ICT. The development of APM thus can have drastic global impacts depending on how it is designed and used. This paper argues that the ethical issues that arise from APM (...) - as both a standalone technology or as a converging one - affects the roles of stakeholders in such a way as to warrant an alternate means furthering responsible innovation in APM research. This paper introduces a value-based design methodology called Value Sensitive Design (VSD) that may serve as a suitable framework to adequately cater to the values of stakeholders. Ultimately, it is concluded that VSD is a strong candidate framework for addressing the moral concerns of stakeholders during the preliminary stages of technological development. (shrink)

Precision Medicine has become a common label for data-intensive and patient-driven biomedical research. Its intended future is reflected in endeavours such as the Precision Medicine Initiative in the USA. This article addresses the question whether it is possible to discern a new ‘medical cosmology’ in Precision Medicine, a concept that was developed by Nicholas Jewson to describe comprehensive transformations involving various dimensions of biomedical knowledge and practice, such as vocabularies, the roles of patients and physicians and the (...) conceptualisation of disease. Subsequently, I will elaborate my assessment of the features of Precision Medicine with the help of Michel Foucault, by exploring how precision medicine involves a transformation along three axes: the axis of biomedical knowledge, of biomedical power and of the patient as a self. Patients are encouraged to become the managers of their own health status, while the medical domain is reframed as a data-sharing community, characterised by changing power relationships between providers and patients, producers and consumers. While the emerging Precision Medicine cosmology may surpass existing knowledge frameworks; it obscures previous traditions and reduces research-subjects to mere data. This in turn, means that the individual is both subjected to the neoliberal demand to share personal information, and at the same time has acquired the positive ‘right’ to become a member of the data-sharing community. The subject has to constantly negotiate the meaning of his or her data, which can either enable self-expression, or function as a commanding Superego. (shrink)

Through the use of culturally appropriate videos on precision medicine research (PMR) that were developed and tailored to five racial and ethnic groups of patients, and subsequent focus-group discu...

Precision livestock farming promises to allow modern, large-scale farms to replicate, at scale, caring farmers who know their animals. PLF refers to a suite of technologies, some only speculative. The goal is to use networked devices to continuously monitor individual animals on large farms, to compare this information to expected norms, and to use algorithms to manage individual animals automatically. Supporters say this could not only create an artificial version of the partially mythologized image of the good steward caring (...) for his or her animals, but to also improve on it. As one paper in favor of PLF has said, “We can not only replace the farmer’s ‘eyes and ears’ to each individual animal as in the past, but several other variables will soon be measurable in practice” Livestock production and society, Wageningen Academic Publishers, Wageningen, pp 287–292, 2006). Yet these methods of monitoring and control raise a host of ethical issues, including alienation of laborers, further consolidation of farms, and further cover for meat consumption. In this paper, I will address these ethical issues, and suggest a different, under-examined concern: namely, that though PLF may indeed improve the lives of livestock, and the sustainability of livestock operations, it is possible that it will do so at the cost of a loss of identity and relationships for farmers, as well as for the animals in their charge. (shrink)

Ground Representationism is the position that for each phenomenal feature there is a representational feature that accounts for it. Against this thesis, Ned Block (The Puzzle of Phenomenal Precision, 2015) has provided an intricate argument that rests on the notion of “phenomenal precision”: the phenomenal precision of a percept may change at a different rate from its representational counterpart. If so, there is then no representational feature that accounts for a specific change of this phenomenal feature. Therefore, (...) Ground Representationism cannot be generally true. -/- Although the notion of phenomenal precision is intuitive, it is admittedly in need of clarification. Here I reconstruct Block’s argument by suggesting a way of estimating phenomenal precision that is based on the assumption that parts of perceptual wholes can share phenomenal features independently of their place in the whole. Understood like this, the overall argument shows what it is supposed to show. -/- A more thorough look at the notion of phenomenal precision suggests tension with Block’s other work: in order to be non-trivial, we have to accept that some of our phenomenality is not concrete, but only generic. Such “solely generic phenomenology”, however, is a position mainly held by opponents to Block’s Access- vs. Phenomenal Consciousness-distinction. Interpreting phenomenal imprecision as constituted by introspective imprecision does not suffice as a way out. It seems that phenomenal precision is either trivial, self-contradictory, or incompatible with Block’s position elsewhere. So some additional elucidation on this crucial notion is needed. (shrink)

St. Thomas Aquinas’ exposition of the Liber de causis, one of the few extended commentaries on this influential work, has received much greater detailed attention during recent decades. Nonetheless, interpretations have diverged concerning how this Neoplatonic source was assimilated and refined by Aquinas. It is not only important to comprehend the originality of procedures and accomplishment of St. Thomas in relation to his work for the sake of historical precision. Equally important is the intention of both the author and (...) his commentator, which is to contribute to our grasp of reality in terms of fundamental metaphysical principles. (shrink)

BackgroundIn precision medicine biomarkers stratify patients into groups that are offered different treatments, but this may conflict with the principle of equal treatment. While some patient characteristics are seen as relevant for unequal treatment and others not, it is known that they all may influence treatment decisions. How biomarkers influence these decisions is not known, nor is their ethical relevance well discussed.MethodsWe distributed an email survey designed to elicit treatment preferences from Norwegian doctors working with cancer patients. In a (...) forced-choice conjoint analysis pairs of hypothetical patients were presented, and we calculated the average marginal component effect of seven individual patient characteristics, to estimate how each of them influence doctors’ priority-setting decisions.ResultsA positive biomarker status increased the probability of being allocated the new drug, while older age, severe comorbidity and reduced physical function reduced the probability. Importantly, sex, education level and smoking status had no significant influence on the decision.ConclusionBiomarker status is perceived as relevant for priority setting decisions, alongside more well-known patient characteristics like age, physical function and comorbidity. Based on our results, we discuss a framework that can help clarify whether biomarker status should be seen as an ethically acceptable factor for providing unequal treatment to patients with the same disease. (shrink)

This paper problematizes the precision medicine approach embraced by the All of Us Research Program (US) and by Genomics England (UK) in terms of benefits distribution, by arguing that current “diversity and inclusion” efforts do not prevent exclusiveness, unless the framing and scope of the projects are revisited in public health terms. Grounded on document analysis and fieldwork interviews, this paper analyzes efforts to address potential patterns of exclusion upstream (from participating in precision medicine research) and downstream (from (...) benefitting from precision medicine outputs). It argues that efforts for inclusion upstream are not corresponded downstream, and this unbalance jeopardizes the equitable capacities of the projects. It concludes that enhanced focus on socio-environmental determinants of health and aligned public health interventions as precision medicine outputs would be to the benefit of all and especially of those who are most at risk of (upstream as well as downstream) exclusion. (shrink)

The success of precision medicine depends on obtaining large amounts of information about at-risk populations. However, getting consent is often difficult. Why? In this commentary I point to the differentials in social status involved. These differentials are inevitable once personal information is surrendered, but are particularly intense when the studied populations are socioeconomically or socioculturally disadvantaged and/or ethnically stigmatized groups. I suggest how the deep distrust of the latter groups can be partially justified as a lack of confidence that (...) their core values or interests will sufficiently be taken into account. Hence, the ethical challenge here lies not in avoiding status differentials, but in dealing with them appropriately. Scientists should not assume trust from others but adopt a norm of “demonstrating trustworthiness”. (shrink)

_More Precisely_ is a rigorous and engaging introduction to the mathematics necessary to do philosophy. Eric Steinhart provides lucid explanations of many basic mathematical concepts and sets out the most commonly used notational conventions. He also demonstrates how mathematics applies to fundamental issues in various branches of philosophy, including metaphysics, philosophy of language, epistemology, and ethics. This second edition adds a substantial section on decision and game theory, as well as a chapter on information theory and the efficient coding of (...) information. (shrink)

Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine (...) initiatives, it is important to understand what the concerns are and how they might be mitigated. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances. Findings from this citizens’ jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Implications of the recommendations and their underlying assumptions for policy decision makers are discussed. This study aligns with prior international studies which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. However, our results differ from prior studies in that opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme. (shrink)

Video surveillance plays a vital role in maintaining the social security although, until now, large uncertainty still exists in danger understanding and recognition, which can be partly attributed to intractable environment changes in the backgrounds. This article presents a brain-inspired computing of attention value of surrounding environment changes with a processes-based cognition model by introducing a ratio valueλof EC-implications within considered periods. Theoretical models for computation of warning level of EC-implications to the universal video recognition efficiency are further established. Imbedding (...) proposed models into the online algorithms is suggested as a future research priority towards precision security for critical applications and, furthermore, schemes for a practical implementation of such integration are also preliminarily discussed. (shrink)

In August of 2018, the results of the largest genomic investigation in human history were published. Scanning the DNA of over one million participants, a genome‐wide association study was conducted to identify genetic variants associated with the number of years of education a person has completed. This measure, called “educational attainment,” is often treated as a proxy for intelligence and cognitive ability. The study raises a host of hard philosophical questions about study design and strength of evidence. It also sets (...) the basis for something far more controversial. Using a new genomic method that generates “polygenic scores,” researchers are now able to use the results of the study to predict a person's educational potential from a blood or saliva sample. Going a step further, some researchers have begun to promote “precision education,” which would tailor students’ school plans to their genetic profiles. The idea of precision education provokes concerns about stigma and self‐fulfilling prophecies. (shrink)

Berichte zur Wissenschaftsgeschichte, Volume 45, Issue 3, Page 487-498, September 2022.

_More Precisely_ provides a rigorous and engaging introduction to the mathematics necessary to do philosophy. It is impossible to fully understand much of the most important work in contemporary philosophy without a basic grasp of set theory, functions, probability, modality and infinity. Until now, this knowledge was difficult to acquire. Professors had to provide custom handouts to their classes, while students struggled through math texts searching for insight. _More Precisely_ fills this key gap. Eric Steinhart provides lucid explanations of the (...) basic mathematical concepts and sets out most commonly used notational conventions. Furthermore, he demonstrates how mathematics applies to many fundamental issues in branches of philosophy such as metaphysics, philosophy of language, epistemology, and ethics. (shrink)

The science of metrology characterizes the concept of precision in exceptionally loose and open terms. That is because the details of the concept must be filled in—what I call narrowing of the concept—in ways that are sensitive to the details of a particular measurement or measurement system and its use. Since these details can never be filled in completely, the concept of the actual precision of an instrument system must always retain some of the openness of its general (...) characterization. The idea that there is something that counts as the actual precision of a measurement system must therefore always remain an idealization, a conclusion that would appear to hold very broadly for terms and the concepts they express. (shrink)

Blended learning has gained increasing popularity in colleges and universities with mixed results. Precision teaching can effectively promote learning performance. The relation between perceived precision teaching and the learning performance of college students in a blended learning environment is investigated in this paper. In the research survey is featuring a structural model, 256 college students who attended blended learning courses featuring precision teaching participated. The model results revealed that PPT is directly and positively related to self-efficacy and (...) learning motivation. Self-efficacy and learning motivation are directly and positively related to cognitive, teaching, and social presence. Additionally, cognitive, teaching, and social presence are directly and positively related to learning performance. Therefore, PPT is remotely and indirectly related to learning performance. These findings provide a new perspective for the theoretical study on blended learning performance and provide a realistic reference for precision teaching practice in the blended learning environment. (shrink)

Amid public health concerns over climate change, “precision public health” is emerging in next generation approaches to practice. These novel methods promise to augment public health operations by using ever larger and more robust health datasets combined with new tools for collecting and analyzing data. Precision strategies to protecting the public health could more effectively or efficiently address the systemic threats of climate change, but may also propagate or exacerbate health disparities for the populations most vulnerable in a (...) changing climate. How PPH interventions collect and aggregate data, decide what to measure, and analyze data pose potential issues around privacy, neglecting social determinants of health, and introducing algorithmic bias into climate responses. Adopting a health justice framework, guided by broader social and climate justice tenets, can reveal principles and policy actions which may guide more responsible implementation of PPH in climate responses. (shrink)

Precision livestock farming (PLF) is the management of livestock using the principles and technology of process engineering. Key to PLF is the dense monitoring of variegated parameters, including animal growth, output of produce (e.g. milk, eggs), diseases, animal behaviour, and the physical environment (e.g. thermal micro-environment, ammonia emissions). While its proponents consider PLF a win-win strategy that combines production efficiency with sustainability goals and animal welfare, critics emphasise, inter alia, the potential interruption of human-animal relationships. This paper discusses the (...) notion that the objectification of animals by PLF influences the developmental pathways of conventional industrial farming. We conduct a conceptual analysis of objectification by comparing discussions in feminist ethics and animal ethics. We find that in animal ethics, objectification includes deontological arguments regarding instrumentalisation, de-animalisation, alienation, commodification and quantification of animals. The focus on socio-political context and relationality connects these debates to central ideas in care ethics. We adopt a care ethics perspective to assess the implications of the objectification of animals in livestock farming. The basic claim is that sensory knowledge symbolised by the farmers’ unity of hand, head and heart would make it harder to objectify animals than abstract and instrumental reasoning where the pursuit of knowledge is intertwined with the pursuit of control, as in mainstream PLF. Despite of what can be considered as a good caring relationship between farmers and animals that is mediated by PLF, people involved in conventional industrial farming still seem to become further detached from farmers and animals, because the PLF system itself is objectifying. PLF redefines the notion of care, in terms of data transparency, standardisation of methods for analysis, real-time collection and processing of data, remote control, and the use of digital platforms. This creates new expectations and requires a redistribution of responsibilities within a wider scope of relations in the value chain. (shrink)

Argues for a failure of correspondence between perceptual representation and what it is like to perceive. If what it is like to perceive is grounded in perceptual representation, then, using considerations of veridical representation, we can show that inattentive peripheral perception is less representationally precise than attentive foveal perception. However, there is empirical evidence to the contrary. The conclusion is that perceptual representation cannot ground what it is like to perceive.

In “Obligations of the Gift” Sandra Lee (2021) suggests that social norms of reciprocity and the expectations and obligations associated with gift-giving afford a framework for addressing social justice considerations in precision medicine. Lee is particularly concerned with obligations to marginalized or oppressed racial and ethnic groups, which are also historically under-represented populations in precision medicine. Obligations arise, Lee argues, through the “gift” that research participants make when they contribute their data or biospecimens to precision medicine research. (...) This conceptualization of research participation is distinct from an altruistic donation model that explicitly precludes obligations of reciprocity. I agree with Lee’s overall project to support social justice aims by better recognizing responsibilities of researchers to their research participants, and increasing diverse participation in biomedical research. However, I am not convinced that the account of “the gift” she deploys can achieve the social justice goals she intends because it risks replicating rather than resisting problematic conceptions of labor, property, and ownership of selves and others. However, an alternate conceptualization of “the gift” found in the work of 20th century French philosopher Jacques Derrida recasts ethical obligations on the part of precision medicine to those who contribute their data and biospecimens for precision medicine research. (shrink)

Precision medicine impacts virtually all medical specializations, including psychiatry. Though precision psychiatry, in general, is a flourishing area of research and debate, psychotherapy as one pillar of psychiatry has received little attention. Theoretical discussions about precision psychotherapy are rare; research on precision in psychotherapy is just evolving. In this paper we provide a conceptualization of precision psychotherapy providing a common idea of what should be understood as precision in the context of psychotherapy and what (...) kind of psychotherapy research can be considered to contribute to the aims of precision psychotherapy. (shrink)

Precision medicine functions by grouping patients along genetic, molecular, and related ‘-omics’ factors. This stratification relies on large, growing databases of patient-volunteered information. Both private companies and government bodies incentivize patients to volunteer this genetic information appealing to the creation of collaborative patient partnerships and the concept of empowerment. This paper aims to address two related questions: (1) what is the actual nature of patient participation in precision medicine research? And (2) is this participation in precision medicine (...) research really that empowering for the average patient? I contend that firstly, the nature of this participation is best conceived of as merely contributory. Contributory participation, as it will be shown, falls short of collaboration. The partnership created by participation in precision medicine research is not one of sharing values, equal say in decisions, or shared benefit. Secondly, I contend that there are important caveats to claims that patient participation in precision medicine is empowering. Empowerment is hindered by the type of participation, the practical use or actionability of genetic data, genetic literacy, the cost of precision drugs for patients that qualify for them, and bioethical considerations of informed consent. (shrink)

The United States’ ambitious Precision Medicine Initiative proposes to accelerate exponentially the adoption of precision medicine, an approach to health care that tailors disease diagnosis, treatment, and prevention to individual variability in genes, environment, and lifestyle. It aims to achieve this by creating a cohort of volunteers for precision medicine research, accelerating biomedical research innovation, and adopting policies geared toward patients’ empowerment. As strategies to implement the PMI are formulated, critical consideration of the initiative's ethical and sociopolitical (...) dimensions is needed. Drawing on scholarship of nationalism and democracy, we discuss the PMI's construction of what we term “genomic citizenship”; the possible normative obligations arising therefrom; and the ethical, legal, and social challenges that will ensue. Although the PMI is a work in progress, discussion of the existing and emerging issues can facilitate the development of policies, structures, and procedures that can maximize the initiative's ability to produce equitable and socially sensitive outcomes. Our analysis can also be applied to other population-based, precision medicine research programs. (shrink)

Marine chronometers, often considered precision instruments, proliferated in navigational practices during the nineteenth century. This paper examines their use in the hands of naval officers in the early-nineteenth century. It argues that both the instruments and their operators required careful management and regulation. In addition, officers learnt and adapted observatory practices relating to the process of data collection and management. Through these means, chronometric data was collected, organized, and reduced to negotiate accurate results.

Solidarity is a fundamental social value in many European countries, though its precise practical and theoretical meaning is disputed. In a health care context, I agree with European writers who take solidarity normatively to mean roughly equal access to effective health care for all. That is, solidarity includes a sense of justice. Given that, I will argue that precision medicine represents a potential weakening of solidarity, albeit not a unique weakening. Precision medicine includes 150 targeted cancer therapies (mostly (...) for metastatic cancer), all of which are extraordinarily expensive. Our critical question: Must a commitment to solidarity as defined mean that all these targeted cancer therapies should be guaranteed to all within each country in the European Union, no matter the cost, no matter the degree of effectiveness? Such a commitment would imply that cancer was ethically special, rightfully commandeering unlimited resources. That in itself would undermine solidarity. I offer multiple examples of how current and future dissemination of these targeted cancer drugs threaten a commitment to solidarity. An alternative is to fund more cancer prevention efforts. However, that too proves a threat to solidarity. Solidarity, with or without a sense of justice, is too abstract a notion to address these challenges. Further, we need to accept that we can only hope to achieve “rough justice” and “supple solidarity.” The precise practical meaning of these notions needs to be worked out through a fair and inclusive process of rational democratic deliberation, which is the real and practical foundation of just solidarity. (shrink)

“Actionability” is a key concept in precision oncology. Its precise definition, however, remains contested. This article undertakes a philosophical analysis of “actionability” to aid in conceptual clarification. We map distinct concepts of actionability, arguing that each is best understood as a contextually objective category articulated to mitigate risk of “conceptual slippage.” We defend “interactive pluralism,” acknowledging the need for distinct concepts but also for conceptual interaction in practice. This article thus offers insights for both practitioners and philosophers, clarifying approaches (...) to actionability for scientists and clinicians and serving as a case study to test competing views on scientific pluralism. (shrink)

Many countries currently invest in technologies and data infrastructures to foster precision medicine (PM), which is hoped to better tailor disease treatment and prevention to individual patients. But who can expect to benefit from PM? The answer depends not only on scientific developments but also on the willingness to address the problem of structural injustice. One important step is to confront the problem of underrepresentation of certain populations in PM cohorts via improved research inclusivity. Yet, we argue that the (...) perspective needs to be broadened because the (in)equitable effects of PM are also strongly contingent on wider structural factors and prioritization of healthcare strategies and resources. When (and before) implementing PM, it is crucial to attend to how the organisation of healthcare systems influences who will benefit, as well as whether PM may present challenges for a solidaristic sharing of costs and risks. We discuss these issues through a comparative lens of healthcare models and PM-initiatives in the United States, Austria, and Denmark. The analysis draws attention to how PM hinges on—and simultaneously affects—access to healthcare services, public trust in data handling, and prioritization of healthcare resources. Finally, we provide suggestions for how to mitigate foreseeable negative effects. (shrink)

Since the turn of the twenty-first century, biomedical psychiatry around the globe has embraced the so-called precision medicine paradigm, a model for medical research that uses innovative techniques for data collection and analysis to reevaluate traditional theories of disease. The goal of precision medicine is to improve diagnostics by restratifying the patient population on the basis of a deeper understanding of disease processes. This paper argues that precision is ill-fitting for psychiatry for two reasons. First, in psychiatry, (...) unlike in fields like oncology, precision medicine has been understood as an attempt to improve medicine by casting out, rather than merely revising, traditional taxonomic tools. Second, in psychiatry the term “biomarker” is often used in reference to signs or symptoms that allow patients to be classified and then matched with treatments; however, in oncology “biomarker” usually refers to a disease mechanism that is useful not only for diagnostics, but also for discovering causal pathways that drug therapies can target. Given these differences between how the precision medicine paradigm operates in psychiatry and in other medical fields like oncology, while precision psychiatry may offer successful rhetoric, it is not a promising paradigm. (shrink)

We explore the extent to which ancient Greek authors formulated concepts that approximate or encompass our modern notions of precision and accuracy. First, we focus on estimates and measurements of geographic features, astronomical times and positions, and weight. These raise further questions about whether the quantities reported were measured, estimated, or rounded. While ancient sources discuss the use of instruments, it is not always clear that the aim was to achieve what we would today regard as ‘precision’. Next, (...) we briefly consider round numbers, observing that they could carry symbolic meaning, while unrounded numbers could give an impression of hard-won achievement. Finally, we examine uses of the word akribeia. This is often translated as ‘precision’ or ‘exactness’, and Greek writers sometimes used akribeia to denote an ideal for their inquiries. A brief look at its uses by a number of Greek writers will on the one hand show the mismatch with our term ‘precision’, and on the other hand throw some light on the aims of Greek investigators. (shrink)

Autism Spectrum Condition presents a challenge to social and relational accounts of the self, precisely because it is broadly seen as a disorder impacting social relationships. Many influential theories argue that social deficits and impairments of the self are the core problems in ASC. Predictive processing approaches address these based on general purpose neurocognitive mechanisms that are expressed atypically. Here we use the High, Inflexible Precision of Prediction Errors in Autism approach in the context of cultural niche construction to (...) explain atypicalities of the relational self, specifically its minimal, extended, and intersubjective aspects. We contend that the social self in ASC should not be seen as impaired, but rather as an outcome of atypical niche construction. We unpack the scientific, ethical, and practical consequences of this view, and discuss implications for how the challenges that autistic persons face should be approached. (shrink)

En este ensayo propongo una lectura de los contornos de la primera Meditación. Con ella intento resaltar una dimensión importante del pensamiento de Descartes en torno a la virtud de la precisión. Contrasto la preocupación por la verdad en la vida cotidiana y en la indagación cartesiana, exploro la manera en que Descartes enfrenta algunos riesgos epistémicos en el curso de su meditación, señalo algunos aspectos de su concepción de la agencia epistémica y concluyo con una breve disquisición alrededor de (...) la apuesta de Pascal. (shrink)

What exactly is a “wicked problem”? It is a social or economic problem that is so complex and so interconnected with other issues that it is extraordinarily difficult or impossible to resolve. This is because all proposed resolutions generate equally complex, equally wicked problems. In this essay, I argue that precision medicine, especially in the context of the U.S. healthcare system, generates numerous wicked problems related to distributive justice. Further, I argue that there are no easy solutions to these (...) wicked problems. The need for trade-offs is inescapable. Rough justice is the best outcome we can hope for, and that outcome requires a commitment to processes of public reason that are fair and inclusive. (shrink)

An uncertainty report describes the extent of an agent’s uncertainty about some matter. We identify two basic requirements for uncertainty reports, which we call faithfulness and completeness. We then discuss two pitfalls of uncertainty assessment that often result in reports that fail to meet these requirements. The first involves adopting a one-size-fits-all approach to the representation of uncertainty, while the second involves failing to take account of the risk of surprises. In connection with the latter, we respond to the objection (...) that it is impossible to account for the risk of genuine surprises. After outlining some steps that both scientists and the bodies who commission uncertainty assessments can take to help avoid these pitfalls, we explain why striving for faithfulness and completeness is important. (shrink)

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues (...) relating to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

Governments are investing in precision medicine with the aim of improving healthcare through the use of genomic analyses and data analytics to develop tailored treatment approaches for individual patients. The success of PM is contingent upon clear public communications that engender trust and secure the social licence to collect and share large population-wide data sets because specific consent for each data re-use is impractical. Variation in the terminology used by different programmes used to describe PM may hinder clear communication (...) and threaten trust. Language is used to create common understanding and expectations regarding precision medicine between researchers, clinicians and the volunteers. There is a need to better understand public interpretations of PM-related terminology. This paper reports on a qualitative study involving 24 focus group participants in the multi-lingual context of Singapore. The study explored how Singaporeans interpret and understand the terms ‘precision medicine’ and ‘personalised medicine’, and which term they felt more aptly communicates the concept and goals of PM. Results suggest that participants were unable to readily link the terms with this area of medicine and initially displayed preferences for the more familiar term of ‘personalised’. The use of visual aids to convey key concepts resonated with participants, some of whom then indicated preferences for the term ‘precision’ as being a more accurate description of PM research. These aids helped to facilitate dialogue around the ethical and social value, as well as the risks, of PM. Implications for programme developers and policy makers are discussed. (shrink)