Imagine you fly home from vacation with your one-and-a-half-year-old son who is traveling for free as a “lap child.” In the airport parking lot, you put him into his forward-facing car seat, where he sits much more contentedly than he did in the rear-facing one that was mandatory until his first birthday. After he falls asleep on the way home, you transfer him to his crib without waking him, lowering the side rail so you can lift him in more easily. (...) -/- Many parts of this idyllic parenting picture are deemed unacceptably risky according to recent child safety proposals. While these proposals all aim to improve child safety, their possible impact is unclear because there has been little discussion of the absolute risk and risk reduction involved in each. And while precise figures are lacking, rough estimates indicate that the magnitudes are quite small. I will argue that this risk and benefit data raises important questions about the proposals, including whether parents might reasonably believe that the small absolute risk reduction offered by the proposed changes does not justify the attendant burdens. This possibility—termed the “prevention paradox” in other contexts—highlights ethical and theoretical challenges in this area of public health. (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)

Some experts have argued that patients should routinely be told the specific magnitude and absolute probability of potential risks and benefits of screening tests. This position is motivated by the idea that framing risk information in ways that are less precise violates the ethical principle of respect for autonomy and its application in informed consent or shared decisionmaking. In this Perspective, we consider a number of problems with this view that have not been adequately addressed. The most important challenges (...) stem from the danger that patients will misunderstand the information or have irrational responses to it. Any initiative in this area should take such factors into account and should consider carefully how to apply the ethical principles of respect for autonomy and beneficence. (shrink)

Future-bias is the preference, all else being equal, for negatively valenced events be located in the past rather than the future, and positively valenced ones to be located in the future rather than the past. Strong risk aversion is the preference to pay some cost to mitigate the badness of the worst outcome. People who are both strongly risk averse and future-biased can face a series of choices that will guarantee them more pain, for no compensating benefit: (...) they will be pain pumped. Thus, combining these preferences is rationally impermissible. Dougherty (2011) argues that this gives us reason to think that future-bias is rationally impermissible. This argument, and a similar one presented by Greene and Sullivan (2015), relies on the idea that if several preferences are not rationally combinable, then in the absence of some explanation of why they are not combinable, we should conclude that (at least) one of them is rationally impermissible. We take up this question by, inter alia, reflecting on the empirical results of a study we ran that probes people’s risk averse and future-biased preferences. We argue that the data, in conjunction with other considerations, suggests that we should not infer from the irrationality of the combination of these preferences to the irrationality of one of the preferences singly. We also argue that given the descriptive data about these preferences, there is no reason to think that, if one of them is rationally impermissible, then it is future-bias. (shrink)

In this essay, we advocate that the issue of health data ethics should no longer be considered on the level of individual scientists or research labs, but rather as a problem involving all stakeholders, from publishers, funders, ethical committees to governments, for the sake of research integrity.

Most medical research and a substantial amount of non-medical research, especially that involving human participants, is governed by some kind of research ethics committee (REC) following the recommendations of the Declaration of Helsinki for the protection of human participants. The role of RECs is usually seen as twofold: firstly, to make some kind of calculation of the risks and benefits of the proposed research, and secondly, to ensure that participants give informed consent. The extent to which the role of the (...) REC includes the former is not uncontroversial. Indeed, the most prevalent debate on the role of RECs sees liberals and strong paternalists arguing over the importance of informed consent given by competent agents versus the significance of making benevolent decisions on behalf of others. On the one hand, liberals argue for the rights of competent adults to decide for themselves the kinds and extents of risks to which they wish to expose themselves. On the other hand, proponents of strong paternalism raise concerns about the likelihood of participants being able to truly understand the complex data involved in research. They support a role for RECs in which they exercise duties of benevolence towards patients and participants by limiting the extent to which they can be exposed to significant, permanent and irreversible harms. In this paper, we will argue that when it comes to decisions about risk it is neither possible nor desirable for RECs to adopt either role. (shrink)

While several tests and strategies are recommended for colorectal cancer (CRC) screening, studies suggest that primary care providers often recommend colonoscopy without providing information about its risks or alternatives. These observations raise concerns about the quality of informed consent for screening colonoscopy.

As the world grapples with the urgent need for sustainable development, the transition towards green energy stands as a critical imperative. Financing this transition poses significant challenges, requiring innovative approaches that align financial objectives with environmental sustainability goals. This review presents a conceptual framework for leveraging data-driven techniques in sustainable finance to facilitate the transition towards green energy. The proposed framework integrates principles of sustainable finance with advanced data analytics to enhance decision-making processes across the financial ecosystem. At (...) its core, the framework emphasizes the importance of harnessing vast datasets related to energy production, consumption, environmental impact, and financial performance. By leveraging machine learning algorithms and predictive modeling techniques, financial stakeholders can gain deeper insights into the risks and opportunities associated with green energy investments. Key components of the framework include data collection and aggregation, risk assessment, impact measurement, and investment optimization. Data sources range from traditional financial indicators to environmental metrics, social impact assessments, and geopolitical factors. Through comprehensive data analysis, financial institutions can assess the long-term viability and sustainability of green energy projects, while also evaluating potential social and environmental impacts. Risk assessment methodologies within the framework consider both financial risks, such as market volatility and regulatory uncertainty, and non-financial risks, such as climate change impacts and community resilience. By integrating these factors into risk models, investors can make more informed decisions that mitigate potential losses and maximize returns. Furthermore, impact measurement tools enable stakeholders to quantify the environmental and social benefits of green energy investments. By tracking metrics such as carbon emissions reduction, energy efficiency improvements, and job creation, investors can assess the contribution of their portfolios towards broader sustainability objectives. Finally, the framework incorporates investment optimization strategies that align financial goals with environmental objectives. Through portfolio diversification, asset allocation, and innovative financial instruments such as green bonds and impact investing funds, financial institutions can allocate capital more efficiently towards green energy projects. The conceptual framework presented herein offers a systematic approach to integrating data-driven methodologies into sustainable finance practices. By leveraging advanced analytics and comprehensive datasets, financial stakeholders can drive the transition towards green energy while simultaneously achieving financial returns and positive environmental outcomes. (shrink)

Patients should not always receive hard data about the risks and benefits of a medical intervention. That information should always be available to patients who expressly ask for it, but it should be part of standard disclosure only sometimes, and only for some patients. And even then, we need to think about how to offer it.

Why can testimony alone be enough for findings of liability? Why statistical evidence alone can’t? These questions underpin the “Proof Paradox” (Redmayne 2008, Enoch et al. 2012). Many epistemologists have attempted to explain this paradox from a purely epistemic perspective. I call it the “Epistemic Project”. In this paper, I take a step back from this recent trend. Stemming from considerations about the nature and role of standards of proof, I define three requirements that any successful account in line with (...) the Epistemic Project should meet. I then consider three recent epistemic accounts on which the standard is met when the evidence rules out modal risk (Pritchard 2018), normic risk (Ebert et al. 2020), or relevant alternatives (Gardiner 2019 2020). I argue that none of these accounts meets all the requirements. Finally, I offer reasons to be pessimistic about the prospects of having a successful epistemic explanation of the paradox. I suggest the discussion on the proof paradox would benefit from undergoing a ‘value-turn’. (shrink)

All societies have to balance privacy claims with other moral concerns. However, while some concern for privacy appears to be a common feature of social life, the definition, extent and moral justifications for privacy differ widely. Are there better and worse ways of conceptualising, justifying, and managing privacy? These are the questions that lie in the background of this thesis. -/- My particular concern is with the ethical issues around privacy that are tied to the rise of new information and (...) communication technologies (henceforth “ICT”). The focus here is on technologies involved in processing personal data in its broadest sense, including “any operation or set of operations which is performed on personal data or on sets of personal data, whether or not by automated means, such as collection, recording, organisation, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction.” The issue of moral concern is commonly designated as that of 'data privacy'. -/- The first step is to consider why privacy matters, or ought to matter, in the first place. And here we run into our first difficulty, since both the conceptualisation of privacy and the justification for the right to privacy are matters for contention. On the one hand, we are animated by a moral concern for privacy in some sense; on the other, we lack the conceptual and moral resources for making sense of this concern or for promoting particular social policies and criticising others. This often-cited dichotomy and its ensuing confusion have been the central motivation for most of the philosophical literature on privacy – including this thesis. -/- In what follows, I will suggest a way out of the confusion that pervades the current debate on data privacy. I will essentially argue two claims: one, that the concept of (data) privacy is uniquely characterised by a particular context within which we exchange information; two, that because (data) privacy constitutes an intrinsic value, its moral concerns and justifications ought to be deliberated as such. -/- The first chapter sketches the current data privacy landscape by introducing a number of concepts and arguing the unique nature of the landscape. I argue that the traditional distinction between four kinds of privacy (physical, mental, decisional and informational) is no longer accurate, given the technological context that reduces, unifies and processes all aspects of people’s lives by means of digital data. In fact, to hold on to the distinction leads to a fundamental misconception of data privacy. I further argue that today’s distinction between data protection and data privacy runs the risk of ignoring the fact that the former is an inherent aspect of the latter. These arguments allow me to settle on a (provisional) definition of data privacy: controlling how data about identifiable people is processed by ICT. -/- Next, I draw a line between descriptive and normative accounts of data privacy, and explain why this book belongs to the latter category. After a brief discussion of the coherence and distinctiveness theses, and of the difference between instrumental and intrinsic theories of privacy, I introduce the problem of data privacy as a distinct, coherent, and intrinsic moral concern. Three arguments support this position: one, data privacy is a coherent moral concern because it is motivated by a singular moral concept; two, data privacy is a distinct moral concern because the privacy challenges we face today are of a fundamentally new nature – distinct from any moral concerns we’ve faced in the past; and three, data privacy is an intrinsic moral concern that is predominantly justified, not by what it instrumentally protects us from, but by what it intrinsically constitutes. -/- Chapter Two makes the case against a harm-based, consequentialist approach to data privacy. After a brief introduction to the basic tenets of consequentialism I discuss harm-based arguments in favour as well as against privacy. I explain how privacy may protect us against psychological distress, but at the same time constitute the source of that distress; how privacy may be necessary for the proper functioning of democratic societies, but at the same time provide a cloak for anti-social and immoral behaviour; and how privacy protects us against the improper use of our personal data by others, but at the same enables us to conceal information or spread false information about ourselves in ways that are harmful to others. Next, I argue that consequentialism essentially relies on two flawed presumptions – that we know what harm is, and that we know how to predict it – and discuss the controversies surrounding definitions and predictions of harm. This argument becomes especially pertinent in today’s rapidly changing technological context: we may guess, and make assumptions, perhaps even find correlations, but don’t really know or understand (yet) with any degree of certainty the harmful consequences today’s data privacy violations are causing or will eventually cause – if any. -/- I illustrate this with examples of recent data privacy violations, and with a brief overview of consequentialist arguments for and against data privacy. Those who invoke consequentialist arguments against data privacy claim that personal data is nothing more than a raw material that can be turned into something useful and valuable without harming anyone. Choosing to move fast and break things – a popular mantra that promotes the benefits of technological “permissionless innovation” over and above its risks and costs – they draw our attention to the many benefits free data flows generate. Those who rely on consequentialist arguments in favour of data privacy, on the other hand, insist on actual and potential misuse of personal data. Rather careful than sorry, they draw our attention to the urgent need to take back control and protect ourselves against data privacy violations – precisely because we don’t know which harm they may cause in the future. Others go one step further and argue that these violations are part of a broader ideology of power. -/- What Chapter Two demonstrates is that vague definitions, unreliable predictions and inconclusive allegations of harm from both sides of the debate perpetuate a stalemate that fails to produce morally defensible answers to our growing data privacy concerns. Deliberating about data privacy from a consequentialist perspective is a dead end. -/- Chapter Three proposes an alternative to the harm-based approach, namely that privacy is an intrinsic value that deserves moral protection for its own sake. After a brief account of what I take values to be, and why we have a need to protect them, I introduce the foundational value of respect for persons, and lay out my main argument in two steps. The conceptual component of my argument returns to the definition of data privacy I had temporarily settled on in Chapter One, but now with the added consideration of the particular context, and particular circumstances and attitudes, within which information is exchanged. This addition is crucial, as it reveals the fundamental value that is at stake in our data privacy concerns, namely the inherent value of each and every person, which we protect by upholding an ethical principle commonly known as the principle of respect for persons. It is for this reason that the violation of privacy cannot (only) be expressed in terms of harm. I further argue that the principle of respect for persons is consistent with, and in fact unthinkable without, some degree of privacy. -/- I reply to potential challenges to a value-based approach to data privacy by showing that (i) values and value trade-offs are fundamentally different from consequential benefits and cost-benefit analyses; (ii) the suspension of one value in favour of another is not inherently contradictory; what matters is morally defensible deliberation about values and valid individual consent; (iii) data privacy concerns cannot be reduced to other moral concerns and therefore deserve a specific, distinct protection. -/- Finally, because this is a thesis in applied ethics, I attempt an answer to the question as to how we ought to apply a value-based approach to practical data privacy concerns. I argue that a revised, three-pronged version of John Rawls’ reflective equilibrium, founded on the non-negotiable principle of respect for persons, is the best possible procedure to deliberate data privacy concerns in relation to other moral values. (shrink)

COVID-19 vaccination of children has begun in various high-income countries with regulatory approval and general public support, but largely without careful ethical consideration. This trend is expected to extend to other COVID-19 vaccines and lower ages as clinical trials progress. This paper provides an ethical analysis of COVID-19 vaccination of healthy children. Specifically, we argue that it is currently unclear whether routine COVID-19 vaccination of healthy children is ethically justified in most contexts, given the minimal direct benefit that COVID-19 (...) vaccination provides to children, the potential for rare risks to outweigh these benefits and undermine vaccine confidence, and substantial evidence that COVID-19 vaccination confers adequate protection to risk groups, such as older adults, without the need to vaccinate healthy children. We conclude that child COVID-19 vaccination in wealthy communities before adults in poor communities worldwide is ethically unacceptable and consider how policy deliberations might evolve in light of future developments. (shrink)

Law-enforcement agencies are increasingly able to leverage crime statistics to make risk predictions for particular individuals, employing a form of inference that some condemn as violating the right to be “treated as an individual.” I suggest that the right encodes agents’ entitlement to a fair distribution of the burdens and benefits of the rule of law. Rather than precluding statistical prediction, it requires that citizens be able to anticipate which variables will be used as predictors and act intentionally to (...) avoid them. Furthermore, it condemns reliance on various indexes of distributive injustice, or unchosen properties, as evidence of law-breaking. (shrink)

If states are permitted to create and maintain a military force, by what means are they permitted to do so? This paper argues that a theory of just recruitment should incorporate a concern for moral risk. Since the military is a morally risky profession for its members, recruitment policies should be evaluated in terms of how they distribute moral risk within a community. We show how common military recruitment practices exacerbate and concentrate moral risk exposure, using the (...) UK as a case study. We argue that the British state wrongs its citizens by subjecting them to excessively morally risky recruitment practices. Since, we argue, this risk exposure cannot be justified by appealing to the benefits of a military career for recruits, our argument calls for reform of existing practices. Our method of evaluation is generalizable and thus can be used to assess other states’ practices. (shrink)

Violence risk assessment tools are increasingly used within criminal justice and forensic psychiatry, however there is little relevant, reliable and unbiased data regarding their predictive accuracy. We argue that such data are needed to (i) prevent excessive reliance on risk assessment scores, (ii) allow matching of different risk assessment tools to different contexts of application, (iii) protect against problematic forms of discrimination and stigmatisation, and (iv) ensure that contentious demographic variables are not prematurely removed from (...) risk assessment tools. (shrink)

This literature review explores the issues and risks in non-conscious data collection and evaluates people’s attitudes towards it. In the modern world, data is one of the most valuable resources, yet studies focused on the potential negative implications of the new data-driven technologies are lacking. Therefore, this thesis conducts a comprehensive literature review to identify and assess risks in non-conscious data collection technologies that are most relevant and referenced in current literature. Accordingly, the most prominent risks (...) are related to privacy issues with personal data, bias in algorithms creating inequality, and the difficulties in creating adequate legislation. Subsequently, the thesis will explore existing studies about people’s attitudes towards non-conscious data collection and examine the most significant socio-demographic determinants of those attitudes. Therefore, despite socio-demographic factors such as age, gender, and economic status affecting the attitudes people have towards data collection technologies, this thesis argues how these approaches can be explained by varying external factors such as prior experiences with similar technologies. (shrink)

Common mental health disorders are rising globally, creating a strain on public healthcare systems. This has led to a renewed interest in the role that digital technologies may have for improving mental health outcomes. One result of this interest is the development and use of artificial intelligence for assessing, diagnosing, and treating mental health issues, which we refer to as ‘digital psychiatry’. This article focuses on the increasing use of digital psychiatry outside of clinical settings, in the following sectors: education, (...) employment, financial services, social media, and the digital well-being industry. We analyse the ethical risks of deploying digital psychiatry in these sectors, emphasising key problems and opportunities for public health, and offer recommendations for protecting and promoting public health and well-being in information societies. (shrink)

Humans and artificial intelligences (AI) will increasingly participate digitally and physically in conflicts yet there is a lack of trusted communications across agents and platforms. For example, humans in disasters and conflict already use messaging and social media to share information, however, international humanitarian relief organisations treat this information as unverifiable and untrustworthy. AI may reduce the ‘fog-of-war’ and improve outcomes, however current AI implementations are often brittle, have a narrow scope of application and wide ethical risks. Meanwhile, human error (...) causes significant civilian harms even by combatants committed to complying with international humanitarian law. AI offers an opportunity to help reduce the tragedy of war and better deliver humanitarian aid to those who need it. However, to be successful, these systems must be trusted by humans and their information systems, overcoming flawed information flows in conflict and disaster zones that continue to be marked by intermittent communications, poor situation awareness, mistrust and human errors. In this paper, we consider the integration of a communications protocol (the ‘Whiteflag protocol’), distributed ledger technology, and information fusion with artificial intelligence (AI), to improve conflict communications called “Protected Assurance Understanding Situation & Entities” PAUSE. Such a trusted human-AI communication network could provide accountable information exchange regarding protected entities, critical infrastructure; humanitarian signals and status updates for humans and machines in conflicts. Trust-based information fusion provides resource-efficient use of diverse data sources to increase the reliability of reports. AI can be used to catch human mistakes and complement human decision making, while human judgment can direct and override AI recommendations. We examine several case studies for the integration of these technologies into a trusted human-AI network for humanitarian benefit including mapping a conflict zone with civilians and combatants in real time, preparation to avoid incidents and using the network to manage misinformation. (shrink)

AI-supported methods for identifying and combating disinformation are progressing in their development and application. However, these methods face a litany of epistemic and ethical challenges. These include (1) robustly defining disinformation, (2) reliably classifying data according to this definition, and (3) navigating ethical risks in the deployment of countermeasures, which involve a mixture of harms and benefits. This paper seeks to expose and offer preliminary analysis of these challenges.

Many ethicists maintain that medical research on human subjects that presents no prospect of direct medical benefit must have a prospect of social benefit to be ethical. Payment is not the sort of benefit that justifies exposing subjects to risk. Alan Wertheimer has raised a serious challenge to this view, pointing out that in industry, social value is not considered necessary to make dangerous jobs ethical. This article argues that Wertheimer was correct to think that the (...) ethics of hazard pay should be the same in medical research and in business. Nevertheless, a qualified social benefit requirement should apply in both fields. For a study or a job with significant net physical risk to be ethical, it must have social value beyond the satisfaction of ordinary preferences, including the preference for money. The requirement derives from a non-absolutist version of the doctrine of double effect. If a risky study or a dangerous job has no distinctive social value, and hazard pay is subjects' or workers’ only reason to undergo risks, the very fact that they undergo risk is intended as a means to a financial end. Inviting people to enrol in such a study or to take such a job wrongfully treats people as mere means. By contrast, if a study or a job has social value, people can participate with a primary end other than money, even if they accept compensation. Researchers or employers do not intend but merely foresee risks to subjects or workers. (shrink)

While children’s experiences of online risks and harm is a growing area of research in New Zealand, public discussion on the matter has largely been informed by mainstream media’s fixation on the dangers of technology. At best, debate on risks online has relied on overseas evidence. However, insights reflecting the New Zealand context and based on representative data are still needed to guide policy discussion, create awareness, and inform the implementation of prevention and support programmes for children. This research (...) report presents findings from a quantitative study regarding different aspects related to risks and online safety. It looks at the online experiences that children find bothersome and upsetting and explores the hurtful behaviours they encounter or engage in, both online and in person. Evidence regarding exposure to different types of potentially harmful online content is also presented. Another relevant contribution is the insights related to excessive internet use.The findings presented in this report are based on data from 2,061 New Zealand children aged 9-17. We hope the findings will contribute to the development of policies, practices and services designed to support New Zealand children to safely take advantage of the opportunities available to them online. (shrink)

An axiom of medical research ethics is that a protocol is moral only if it has a “favorable risk-benefit ratio”. This axiom is usually interpreted in the following way: a medical research protocol is moral only if it has a positive expected value -- that is, if it is likely to do more good (to both subjects and society) than harm. I argue that, thus interpreted, the axiom has two problems. First, it is unusable, because it requires us (...) to know more about the potential outcomes of research than we ever could. Second, it is false, because it conflicts with the so-called “soft paternalist” principles of liberal democracy. In place of this flawed rule I propose a new way of making risk-benefit assessments, one that does comport with the principles of liberalism. I argue that a protocol is moral only if it would be entered into by competent subjects who are informed about the protocol. The new rule this eschews all pseudo-utilitarian calculation about the protocol’s likely harms and benefits. (shrink)

Most people are completely oblivious to the danger that their medical data undergoes as soon as it goes out into the burgeoning world of big data. Medical data is financially valuable, and your sensitive data may be shared or sold by doctors, hospitals, clinical laboratories, and pharmacies—without your knowledge or consent. Medical data can also be found in your browsing history, the smartphone applications you use, data from wearables, your shopping list, and more. At (...) best, data about your health might end up in the hands of researchers on whose good will we depend to avoid abuses of power.2 Most likely, it will end up with data brokers who might sell it to a future employer, or an insurance company, or the government. At worst, your medical data may end up in the hands of criminals eager to commit extortion or identity theft. In addition to data harms related to exposure and discrimination, the collection of sensitive data by powerful corporations risks the creation of data monopolies that can dominate and condition access to health care. -/- This chapter aims to explore the challenge that big data brings to medical privacy. Section I offers a brief overview of the role of privacy in medical settings. I define privacy as having one’s personal information and one’s personal sensorial space (what I call autotopos) unaccessed. Section II discusses how the challenge of big data differs from other risks to medical privacy. Section III is about what can be done to minimise those risks. I argue that the most effective way of protecting people from suffering unfair medical consequences is by having a public universal healthcare system in which coverage is not influenced by personal data (e.g., genetic predisposition, exercise habits, eating habits, etc.). (shrink)

Research, innovation, and progress in the life sciences are increasingly contingent on access to large quantities of data. This is one of the key premises behind the “open science” movement and the global calls for fostering the sharing of personal data, datasets, and research results. This paper reports on the outcomes of discussions by the panel “Open science, data sharing and solidarity: who benefits?” held at the 2021 Biennial conference of the International Society for the History, Philosophy, (...) and Social Studies of Biology, and hosted by Cold Spring Harbor Laboratory. (shrink)

Research in infection biology aims to understand the complex nature of host–pathogen interactions. While this knowledge facilitates strategies for preventing and treating diseases, it can also be intentionally misused to cause harm. Such dual-use risk is potentially high for highly pathogenic microbes such as Risk Group-3 (RG3) bacteria and RG4 viruses, which could be used in bioterrorism attacks. However, other pathogens such as influenza virus (IV) and enterohemorrhagic Escherichia coli (EHEC), usually classified as RG2 pathogens, also demonstrate high (...) dual-use risk. As the currently approved therapeutics against these pathogens are not satisfactorily effective, previous outbreaks of these pathogens caused enormous public fear, media attention and economic burden. In this interdisciplinary review, we summarize the current perspectives of dual-use research on IV and EHEC, and further highlight the dual-use risk associated with evolutionary experiments with these infectious pathogens. We support the need to carry out experiments pertaining to pathogen evolution, including to gain predictive insights on their evolutionary trajectories, which cannot be otherwise achieved with stand-alone theoretical models and epidemiological data. However, we also advocate for increased awareness and assessment strategies to better quantify the risks-versus-benefits associated with such evolutionary experiments. In addition to building public trust in dual-use research, we propose that these approaches can be extended to other pathogens currently classified as low risk, but bearing high dual-use potential, given the particular pressing nature of their rapid evolutionary potential. (shrink)

The conjunction of wireless computing, ubiquitous Internet access, and the miniaturisation of sensors have opened the door for technological applications that can monitor health and well-being outside of formal healthcare systems. The health-related Internet of Things (H-IoT) increasingly plays a key role in health management by providing real-time tele-monitoring of patients, testing of treatments, actuation of medical devices, and fitness and well-being monitoring. Given its numerous applications and proposed benefits, adoption by medical and social care institutions and consumers may be (...) rapid. However, a host of ethical concerns are also raised that must be addressed. The inherent sensitivity of health-related data being generated and latent risks of Internet-enabled devices pose serious challenges. Users, already in a vulnerable position as patients, face a seemingly impossible task to retain control over their data due to the scale, scope and complexity of systems that create, aggregate, and analyse personal health data. In response, the H-IoT must be designed to be technologically robust and scientifically reliable, while also remaining ethically responsible, trustworthy, and respectful of user rights and interests. To assist developers of the H-IoT, this paper describes nine principles and nine guidelines for ethical design of H-IoT devices and data protocols. (shrink)

The overall goal of the approach developed in this paper is to estimate the likelihood of a given kinetic kill scenario between hostile spacebased adversaries using the mathematical framework of Complex Conceptual Spaces Single Observation. Conceptual spaces are a cognitive model that provide a method for systematically and automatically mimicking human decision making. For accurate decisions to be made, the fusion of both hard and soft data into a single decision framework is required. This presents several challenges to this (...) data fusion framework. The first is the challenge involved in handling multiple complex terminologies, which is addressed by drawing on a set of Space Domain Ontologies. Another challenge is the complex combinatorics involved when considering all possible feature combinations. This can be mitigated by using integer linear programming optimization that is outlined by the Complex Conceptual Spaces Single Observation mathematical model framework. A third challenge is the complicated physics that is involved in a spacecraft collision that must be addressed to obtain a better understanding of threat assessment. Overcoming these various challenges allows for a quantitative ranking for the potential of a kinetic kill collision across multiple spacecraft pairs. In addition to overcoming these challenges this paper will break down threat assessment into four domains and identify a ranking of threat both for each individual domain and for the four domains combined. Simulation results are shown to verify the developed concepts. (shrink)

Digital data help data scientists and epidemiologists track and predict outbreaks of disease. Mobile phone GPS data, social media data, or other forms of information updates such as the progress of epidemics are used by epidemiologists to recognize disease spread among specific groups of people. Targeting groups as potential carriers of a disease, rather than addressing individuals as patients, risks causing harm to groups. While there are rules and obligations at the level of the individual, we (...) have to reach a stage in the development of data analytics where groups are protected as entities. This chapter offers a deeper examination of harms to the groups. (shrink)

Nowadays, the economic and social nature of contemporary business organizations chiefly banks binds them to face with the sheer volume of data and information and the key to commercial success in this area is the proper use of data for making better, faster and flawless decisions. To achieve this goal organizations requires strong and effective tools to enable them in automating task analysis, decision-making, strategy formulation and risk prediction to prevent bankruptcy and fraud .Business Intelligence is a (...) set of skills, technologies and application systems used to collect, store, analyze and create effective access to the task to help organizations better understand the business context and make accurate decision timely and respond quickly toward inflation, rate fluctuations and the market price. In this paper we review recent literature in the search for trends in business intelligence applications for the banking industry and its challenges and finally some articles that comprise this special issue are introduced and characterized in terms of business intelligence research framework. (shrink)

Purpose: The research explored empirical evidence to assess the impact of cyber security and supply chain risk on digital operations in the UAE pharmaceutical industry. Methodology/Design/Approach: Based on responses from 243 personnel working at 14 pharmaceutical manufacturing companies in Dubai, data were examined for normality, instrument validity and regression analysis. Cyber security and SC risk on digital operations were explored by applying convenient sampling and descriptive and analytical research design. Findings: The findings validated the significant positive association (...) between cyber security and supply chain risk with digital operations. Research implications and Limitations: The research model was developed with three variables evaluated only on the pharmaceutical industry in Dubai. Future research should focus on multiple manufacturing industries by covering a larger geographic area. Practical implications: When suppliers are highly concentrated, customer-focused organisations with uncertain levels of digital transformation could improve their ability to manage supply chain risk by diversifying their clients. Pharmaceutical firms may require a greater focus on technology-based manufacturing firms to build and maintain customer trust. Originality Value: To illustrate how the pharmaceutical industry has explored the relationship between cyber security, supply chain risk and digital operations, the research highlights the significant and convoluted consequences of the relationship model that have not been previously considered. (shrink)

Relational aspects, such as involvement of donor’s relatives or friends in the decision-making on participation in a research biobank, providing relatives’ health data to researchers, or sharing research findings with relatives should be considered when reflecting on ethical aspects of research biobanks. The aim of this paper is to explore what the role of donor’s relatives and friends is in the process of becoming and being a biobank donor and which ethical issues arise in this context. We performed qualitative (...) analysis of 40 qualitative semi-structured interviews with biobank donors and researchers. The results show that relatedness to relatives or other types of close relationships played a significant role in the donors’ motivation to be involved in a biobank, risk-benefit assessment, and decisions on sharing information on research and its results. Interviewees mentioned ethical issues in the context of sharing relatives’ health-related data for research purposes and returning research findings that may affect their relatives. We conclude that the question of what information on family members may be shared with a biobank by research participants without informed consent of those relatives, and when family members become research subjects, lacks a clear answer and detailed guidelines, especially in the context of the introduction of the European Union’s (EU) General Data Protection Regulation. Researchers in Latvia and EU face ethical questions and dilemmas about returning research results and incidental findings to donors’ relatives, and donors need more information on sharing research results with relatives in the informed consent process. (shrink)

This Note offers a normative critique of cost-benefit analysis, one informed by deontological moral theory, in the context of the debate over whether tort litigation or a non-tort approach is the appropriate response to mass harm. The first Part argues that the difference between lay and expert intuitions about risk and harm often reflects a difference in normative judgments about the existing facts, rather than a difference in belief about what facts exist, which makes the lay intuitions more (...) defensible. The second Part considers how tort has dealt with this divergence between lay and expert perspectives. It also evaluates how tort's approach has differed from that of public law approaches to accident law, such as legislative compensation and risk regulation by administrative agencies. Ultimately, tort's ability to recognize the value of lay intuitions supports retaining the tort perspective as part of our societal arsenal of responses to risk and harm. This ability can also support a pro-tort perspective in two practical debates in the arena of tort law: that over preemption of tort law by administrative agency judgments, and that over access to tort recovery as part of a no-fault system. (shrink)

Biobanks act as the custodians for the access to and responsible use of human biological samples and related data that have been generously donated by individuals to serve the public interest and scientific advances in the health research realm. Risk assessment has become a daily practice for biobanks and has been discussed from different perspectives. This paper aims to provide a literature review on risk assessment in order to put together a comprehensive typology of diverse risks biobanks (...) could potentially face. Methodologically set as a typology, the conceptual approach used in this paper is based on the interdisciplinary analysis of scientific literature, the relevant ethical and legal instruments and practices in biobanking to identify how risks are assessed, considered and mitigated. Through an interdisciplinary mapping exercise, we have produced a typology of potential risks in biobanking, taking into consideration the perspectives of different stakeholders, such as institutional actors and publics, including participants and representative organizations. With this approach, we have identified the following risk types: economic, infrastructural, institutional, research community risks and participant’s risks. The paper concludes by highlighting the necessity of an adaptive risk governance as an integral part of good governance in biobanking. In this regard, it contributes to sustainability in biobanking by assisting in the design of relevant risk management practices, where they are not already in place or require an update. The typology is intended to be useful from the early stages of establishing such a complex and multileveled biomedical infrastructure as well as to provide a catalogue of risks for improving the risk management practices already in place. (shrink)

The potential to collect brain data more directly, with higher resolution, and in greater amounts has heightened worries about mental and brain privacy. In order to manage the risks to individuals posed by these privacy challenges, some have suggested codifying new privacy rights, including a right to “mental privacy.” In this paper, we consider these arguments and conclude that while neurotechnologies do raise significant privacy concerns, such concerns are—at least for now—no different from those raised by other well-understood (...) class='Hi'>data collection technologies, such as gene sequencing tools and online surveillance. To better understand the privacy stakes of brain data, we suggest the use of a conceptual framework from information ethics, Helen Nissenbaum’s “contextual integrity” theory. To illustrate the importance of context, we examine neurotechnologies and the information flows they produce in three familiar contexts—healthcare and medical research, criminal justice, and consumer marketing. We argue that by emphasizing what is distinct about brain privacy issues, rather than what they share with other data privacy concerns, risks weakening broader efforts to enact more robust privacy law and policy. (shrink)

This paper presents an overview of the risks and benefits of Social AI, understood as conversational AI systems that cater to human social needs like romance, companionship, or entertainment. Section 1 of the paper provides a brief history of conversational AI systems and introduces conceptual distinctions to help distinguish varieties of Social AI and pathways to their deployment. Section 2 of the paper adds further context via a brief discussion of anthropomorphism and its relevance to assessment of human-chatbot relationships. Section (...) 3 of the paper provides a survey of potential and in some cases demonstrated harms associated with user interactions with Social AI systems. Finally, Section 4 discusses how the benefits and harms of Social AI can best be addressed, with a primary focus on how frameworks from AI ethics can inform their development. (shrink)

For smart cities, data-driven innovation promises societal benefits and increased well-being for residents and visitors. At the same time, the deployment of data-driven innovation poses significant ethical challenges. Although cities and other public-sector actors have increasingly adopted ethical principles, employing them in practice remains challenging. In this commentary, we use a virtue-based approach that bridges the gap between abstract principles and the daily work of practitioners who engage in and with data-driven innovation processes. Inspired by Aristotle, we (...) describe practices of data-driven innovation in a smart city applying the concepts of virtue and phronêsis, meaning good judgment of and sensitivity to ethical issues. We use a dialogic case-study approach to study two cases of data-driven innovation in the city of Helsinki. We then describe as an illustration of how our approach can help bridge the gap between concrete practices of data-driven innovation and high-level principles. Overall, we advance a theoretically grounded, virtue-based approach, which is practice oriented and linked to the daily work of data scientists and other practitioners of data-driven innovation. Further, this approach helps understand the need for and importance of individual application of phronêsis, which is particularly important in public-sector organizations that can experience gaps between principle and practice. This importance is further intensified in cases of data-driven innovation in which, by definition, novel and unknown contexts are explored. (shrink)

In the last decade there has been a movement towards facilitating Open Access to academic outputs via the World Wide Web. This movement has been characterised as one that embodies corporate citizenship because such sharing has the potential to benefit all stakeholders: academics, policy makers, charitable sectors and the wider public. In the UK, the Economic and Social Research Council are implementing Open Access compliance guidelines for research that they fund, which is interpreted by individual institutions in their school (...) regulations. In the case of doctoral theses, there is now a requirement for students to provide an electronic format of their final work to be included in their school's online digital repository. In a number of UK institutions, University Awards and Progress Committees will only consider awarding the doctoral degree once these requirements have been satisfied. Although this move to Open Access can be considered as an egalitarian endeavour, this paper argues that an important stakeholder may have been overlooked in the march towards progressive dissemination. The temporal space between gaining informed consent from research participants and the changing nature of the accessibility of outputs can both engender a breach of ethics in terms of the initial agreements negotiated with participants and raise issues around representation in the ongoing dissemination and reformulation of the original work, particularly where visual images are central to research outputs. The paper utilises autoethnography and poetry to reflect on my own encounter with the requirement for Open Access and the ways in which this brings up concerns around ethics, obligations and integrity. (shrink)

In this paper, we argue that our moral concern for future well-being should reduce over time due to important practical considerations about how humans interact with spacetime. After surveying several of these considerations (around equality, special duties, existential contingency, and overlapping moral concern) we develop a set of core principles that can both explain their moral significance and highlight why this is inherently bound up with our relationship with spacetime. These relate to the equitable distribution of (1) moral concern in (...) a universe that we can only causally affect in one temporal direction; (2) access to the benefits from using spacetime as a resource; and (3) the burdens of care given (1) and (2). We conclude by considering the practical implications of our argument and find that, while it is often assumed that a preference for present over future well-being weakens the case for existential risk mitigation, this likely is not the case. (shrink)

This chapter provides a high-level overview of key ethical issues raised by the use of surveillance technologies, such as digital contact tracing, disease surveillance, and vaccine passports, to combat the COVID-19 pandemic. To some extent, these issues are entirely familiar. I argue that they raise old questions in new form and with new urgency, at the intersection of information ethics, research ethics, and public health. Whenever we deal with data-driven technologies, we have to ask how they fare in relation (...) to important values like privacy, fairness, transparency, and accountability—values emphasized by information ethics scholars. Likewise, when such technologies put individuals at risk in order to drive scientific research and knowledge construction, we have to ask how they implicate values such as autonomy, beneficence and non-maleficence, and justice—values central to research ethics. And as researchers focusing on health information have long argued, when the data collected by these technologies pertain to individuals and public health, these ethical issues take on a special cast. -/- It is also true, however, that the pandemic has placed these questions in a new and revealing light. I highlight three insights from information ethics and research ethics that can help us navigate this difficult terrain. First, the value of privacy is instrumental, not absolute—there is nothing wrong with asking how to balance privacy against other important values. Second, privacy has both individual and social importance. Weighing privacy, on one hand, and public health, on the other, is not, therefore, a contest between individual and collective interests. Rather, it is an attempt to balance disparate public goods. Third, we ought to put these kinds of ethical decisions in the hands of third parties, rather than leaving them up to those who directly stand to benefit from them. In the case of pandemic surveillance technologies, this should mean more public, democratic oversight. (shrink)

With the growing focus on prevention in medicine, studies of how to describe risk have become increasing important. Recently, some researchers have argued against giving patients “comparative risk information,” such as data about whether their baseline risk of developing a particular disease is above or below average. The concern is that giving patients this information will interfere with their consideration of more relevant data, such as the specific chance of getting the disease (the “personal (...) class='Hi'>risk”), the risk reduction the treatment provides, and any possible side effects. I explore this view and the theories of rationality that ground it, and I argue instead that comparative risk information can play a positive role in decision-making. The criticism of disclosing this sort of information to patients, I conclude, rests on a mistakenly narrow account of the goals of prevention and the nature of rational choice in medicine. (shrink)

Wearable devices are increasingly present in the health context, as tools for biomedical research and clinical care. In this context, wearables are considered key tools for a more digital, personalised, preventive medicine. At the same time, wearables have also been associated with issues and risks, such as those connected to privacy and data sharing. Yet, discussions in the literature have mostly focused on either technical or ethical considerations, framing these as largely separate areas of discussion, and the contribution of (...) wearables to the collection, development, application of biomedical knowledge has only partially been discussed. To fill in these gaps, in this article we provide an epistemic (knowledgerelated) overview of the main functions of wearable technology for health: monitoring, screening, detection, and prediction. On this basis, we identify 4 areas of concern in the application of wearables for these functions: data quality, balanced estimations, health equity, and fairness. To move the field forward in an effective and beneficial direction, we present recommendations for the 4 areas: local standards of quality, interoperability, access, and representativity. (shrink)

In 2012, a major traffic safety organization tasked the MIT AgeLab with developing a data-driven system for rating the effectiveness of new technologies intended to improve safety. Such a system was envisioned as having the potential to educate and guide consumers towards more confident and strategic purchasing decisions, ideally encouraging adoption of technologies with demonstrated safety benefit. In addition, an evaluation of the status and extent of existing data was seen as a way of identifying research gaps (...) in the state of knowledge about safety systems. The focus was on technologies as a class, not on a rating review of individual vehicle model implementations. As conceptualized, the system aimed to complement traditional NCAP style ratings as well as to provide consumers with transparent information on early stage and often improving safety technologies. Development of the rating system and identification of data was undertaken in consultation with a range of academic, industrial, consumer, NGO, and governmental experts as well as with representatives of many of the major automotive manufacturers and suppliers. -/- A key observation that emerged was that data on objectively demonstrable real-world benefits were generally sparse and often lower than expectations based on theoretical considerations, simulation studies, or pre-production evaluations. A number of experts and industry representatives expressed some surprise at both the divergence between theoretical and observed benefits and the relative scarcity of data upon which to make objective assessments, while others were quite aware of these issues and the need for the development of objective data under real-world operating conditions. A number of factors that might be relevant to understanding why such differences between expected and observed benefits exist were identified. One outcome of this effort was the founding of the Advanced Vehicle Technology (AVT) consortium to collect and examine objective data under naturalistic driving conditions of how drivers interact with, engage or don’t engage, various production safety and driver assistance systems. This ongoing effort is contributing to insights concerning actual benefits and reasons for benefit gaps. -/- Drawing from our initial work, as well as newer sources of data, we argue that the evaluation and rating of safety and driver assistance technologies for informing the consumer and the public at large should consider both theoretical potential and existing demonstrated benefit of specific technologies. This position is increasingly relevant as the effectiveness of many newer technologies have the potential to actually improve over the lifecycle of a vehicle through software updates. The emphasis on ratings based on observed benefit for actual drivers under real-world conditions is proposed to be complementary, rather than competing with, ratings focused largely on controlled test track evaluations of engineered capability. In addition, a case is made for providing ratings that assesses benefit relative to overall crash, injury, and fatality rates – and in relation to the specific scenario / crash event type that a given technology is intended to address. This approach should aid consumers in considering the extent to which a specific technology is or is not relevant to their particular driving needs. (shrink)

ICTs, personal data, digital rights, the GDPR, data privacy, online security… these terms, and the concepts behind them, are increasingly common in our lives. Some of us may be familiar with them, but others are less aware of the growing role of ICTs and data in our lives - and the potential risks this creates. These risks are even more pronounced for vulnerable groups in society. People can be vulnerable in different, often overlapping, ways, which place them (...) at a disadvantage to the majority of citizens; Table 3 in this guide presents some of the many forms and causes of vulnerability. As a result, vulnerable people need greater support to navigate the digital world, and to ensure that they are able to exercise their rights. This guide explains where such support can be found, and also answers the following questions: - What are the main ethical and legal issues around ICTs for vulnerable citizens? - Who is vulnerable in Europe? - How do issues around ICTs affect vulnerable people in particular? This guide is a resource for members of vulnerable groups, people who work with vulnerable groups, and citizens more broadly. It is also useful for data controllers1 who collect data about vulnerable citizens. While focused on citizens in Europe, it may be of interest to people in other parts of the world. It forms part of the Citizens’ Information Pack produced by the PANELFIT project, and is available in English, French, German, Italian and Spanish. You are welcome to translate this guide into other languages. Please send us a link to online versions in other languages, so that we can add them to the project website. (shrink)

ABSTRACT We have previously argued that there are forms of greenhouse gas offsetting for which, when one emits and offsets, one imposes no risk. Orri Stefansson objects that our argument fails to distinguish properly between the people who stand to be harmed by one’s emissions and the people who stand to be benefited by one’s offsetting. We reply by emphasizing the difference between acting with a probability of making a difference to the distribution of harm and acting in a (...) way that worsen’s someone’s prospect. (shrink)

Many global catastrophic risks are threatening human civilization, and a number of ideas have been suggested for preventing or surviving them. However, if these interventions fail, society could preserve information about the human race and human DNA samples in the hopes that the next civilization on Earth will be able to reconstruct Homo sapiens and our culture. This requires information preservation of an order of magnitude of 100 million years, a little-explored topic thus far. It is important that a potential (...) future civilization will discover this information as early as possible, thus a beacon should accompany the message in order to increase visibility. The message should ideally contain information about how humanity was destroyed, perhaps including a continuous recording until the end. This could help the potential future civilization to survive. The best place for long-term data storage is under the surface of the Moon, with the beacon constructed as a complex geometric figure drawn by small craters or trenches around a central point. There are several cost-effective options for sending the message as opportunistic payloads on different planned landers. (shrink)

A lively topic of debate in decision theory over recent years concerns our understanding of the different risk attitudes exhibited by decision makers. There is ample evidence that risk-averse and risk-seeking behaviours are widespread, and a growing consensus that such behaviour is rationally permissible. In the context of clinical medicine, this matter is complicated by the fact that healthcare professionals must often make choices for the benefit of their patients, but the norms of rational choice are (...) conventionally grounded in a decision maker’s own desires, beliefs and actions. The presence of both doctor and patient raises the question of whose risk attitude matters for the choice at hand and what to do when these diverge. Must doctors make risky choices when treating risk-seeking patients? Ought they to be risk averse in general when choosing on behalf of others? In this paper, I will argue that healthcare professionals ought to adopt a deferential approach, whereby it is the risk attitude of the patient that matters in medical decision making. I will show how familiar arguments for widely held anti-paternalistic views about medicine can be straightforwardly extended to include not only patients’ evaluations of possible health states, but also their attitudes to risk. However, I will also show that this deferential view needs further refinement: patients’ higher-order attitudes towards their risk attitudes must be considered in order to avoid some counterexamples and to accommodate different views about what sort of attitudes risk attitudes actually are. (shrink)

Some early phase clinical studies of candidate HIV cure and remission interventions appear to have adverse medical risk–benefit ratios for participants. Why, then, do people participate? And is it ethically permissible to allow them to participate? Recent work in decision theory sheds light on both of these questions, by casting doubt on the idea that rational individuals prefer choices that maximise expected utility, and therefore by casting doubt on the idea that researchers have an ethical obligation not to (...) enrol participants in studies with high risk–benefit ratios. This work supports the view that researchers should instead defer to the considered preferences of the participants themselves. This essay briefly explains this recent work, and then explores its application to these two questions in more detail. (shrink)

What proper role should considerations of risk, particularly to research subjects, play when it comes to conducting research on human enhancement in the military context? We introduce the currently visible military enhancement techniques (1) and the standard discussion of risk for these (2), in particular what we refer to as the ‘Assumption’, which states that the demands for risk-avoidance are higher for enhancement than for therapy. We challenge the Assumption through the introduction of three categories of enhancements (...) (3): therapeutic, preventive, and pure enhancements. This demands a revision of the Assumption (4), alongside which we propose some further general principles bearing on how to balance risks and benefits in the context of military enhancement research. We identify a particular type of therapeutic enhancements as providing a more responsible path to human trials of the relevant interventions than pure enhancement applications. Finally, we discuss some possible objections to our line of thought (5). While acknowledging their potential insights, we ultimately find them to be unpersuasive, at least provided that our proposal is understood as fully non-coercive towards the candidates for such therapeutic enhancement trials. (shrink)