The debate about embedding information ethics in the curriculum in Africa is gaining momentum as scholars from developed and developing world engage on the subject. Some research publications are starting to emerge on information ethics in Africa but so far they have been confined to addressing the extent to which information ethics is necessary, who should offer information ethics and why, who should be taught and at what levels, the duration of offering (...) the course/program and the content that should be included in the curriculum. Little attention has been placed on the theoretical framework that should underpin IE curriculum for Africa as well as the sources of IE content for the curriculum. This paper therefore addresses the following issues: rationale for integrating information ethics in the curricula in Africa; theoretical and institutional framework for IE curriculum; potential sources of content for information ethics curricula, challenges of integrating information ethics into the curricula in Africa and prospects for integrating IE into the curricula in Africa. (shrink)

The paper argues that Information Ethics (IE) can provide a successful approach for coping with the challenges posed by our increasingly globalized reality. After a brief review of some of the most fundamental transformations brought about by the phenomenon of globalization, the article distinguishes between two ways of understanding Global Information Ethics, as an ethics of global communication or as a global-information ethics. It is then argued that cross-cultural, successful interactions among micro and (...) macro agents call for a high level of successful communication, that the latter requires a shared ontology friendly towards the implementation of moral actions, and that this is provided by IE. There follows a brief account of IE and of the ontic trust, the hypothetical pact between all agents and patients presupposed by IE. (shrink)

Abstract: The information ethics (IE) of Floridi and Sanders is evaluated here in the light of an alternative in virtue ethics that is antifoundationalist, particularist, and relativist in contrast to Floridi's foundationalist, impartialist, and universalist commitments. Drawing from disparate traditional sources like Aristotle, Nietzsche, and Emerson, as well as contemporary advocates of virtue ethics like Nussbaum, Foot, and Williams, the essay shows that the central contentions of IE, including especially the principle of ontological equality, must either (...) express commitments grounded in the particular perspectives we already inhabit, or be without rational or ethical force for us. (shrink)

In recent years, “Information Ethics” (IE) has come to mean different things to different researchers working in a variety of disciplines, including computer ethics, business ethics, medical ethics, computer science, the philosophy of information, social epistemology and library and information science. Using an ontocentric approach, this paper seeks to define the parameters of IE and thereby increase our understanding of the moral challenges associated with Information Communication Technologies.

The essential difficulty about Computer Ethics' (CE) philosophical status is a methodological problem: standard ethical theories cannot easily be adapted to deal with CE-problems, which appear to strain their conceptual resources, and CE requires a conceptual foundation as an ethical theory. Information Ethics (IE), the philosophical foundational counterpart of CE, can be seen as a particular case of environmental ethics or ethics of the infosphere. What is good for an information entity and the infosphere (...) in general? This is the ethical question asked by IE. The answer is provided by a minimalist theory of deseerts: IE argues that there is something more elementary and fundamental than life and pain, namely being, understood as information, and entropy, and that any information entity is to be recognised as the centre of a minimal moral claim, which deserves recognition and should help to regulate the implementation of any information process involving it. IE can provide a valuable perspective from which to approach, with insight and adequate discernment, not only moral problems in CE, but also the whole range of conceptual and moral phenomena that form the ethical discourse. (shrink)

Luciano Floridi presents Information Ethics (IE) as an alternative to traditional moral theories. IE consists of two tenets. First, reality can be interpreted at numerous, mutually consistent levels of abstraction, the highest of which is information. This level, unlike the others, applies to all of reality. Second, everything, insofar as it is an information object, has some degree of intrinsic value and hence moral dignity. I criticize IE, arguing that Floridi fails to show that the moral (...) community should be expanded beyond beings capable of suffering or having preferences. Next, I look at Floridi’s extended case against consequentialism generally and utilitarianism in particular. I try to show that his criticisms are flawed. Third, I argue that, for the most part, it is not clear what IE’s practical implications are. I conclude with a critical discussion of the one area of information ethics, traditionally conceived, that Floridi has written about at length, privacy. (shrink)

Based on personal experience, and content analysis, this paper examines Information Ethics from a student‘s perspective. Within this framework the paper defines IE, outlines the history of IE and highlights incidences of IE violations in Uganda. The paper concludes with proposals towards better adherence to IE in Uganda. The paper presents personal experience, observation and a content analysis methodology.

This paper analyses whistleblowing from the perspective of Floridi’s information ethics. Although there is a vast body of literature on whistleblowing using micro-ethical or meso-ethical frameworks, whistleblowing has previously not been researched using a macro-ethical or ecopoietic framework. This paper is the first to explicitly do so. Empirical research suggests whistleblowing is a process rather than a single decision and action. I argue this process evolves depending on how whistleblowing is facilitated throughout that process, i.e. responding to whistleblowers (...) and providing information about whistleblowing activity. The paper develops a typology of whistleblowing facilitation to complement Floridi’s IE. The findings suggest that for whistleblowing to be beneficial to the informational environment, facilitation must filter out untrue whistleblowing, and achieve closure with the whistleblower, especially when whistleblowing is mistaken or deliberately false. I also find that publishing information about whistleblowing activity can be beneficial for the informational environment, but only if all organizations or all regulators do so. (shrink)

This paper presents the first bibliometric mapping analysis of the field of computer and information ethics (C&IE). It provides a map of the relations between 400 key terms in the field. This term map can be used to get an overview of concepts and topics in the field and to identify relations between information and communication technology concepts on the one hand and ethical concepts on the other hand. To produce the term map, a data set of (...) over thousand articles published in leading journals and conference proceedings in the C&IE field was constructed. With the help of various computer algorithms, key terms were identified in the titles and abstracts of the articles and co-occurrence frequencies of these key terms were calculated. Based on the co-occurrence frequencies, the term map was constructed. This was done using a computer program called VOSviewer. The term map provides a visual representation of the C&IE field and, more specifically, of the organization of the field around three main concepts, namely privacy, ethics, and the Internet. (shrink)

It has been argued that moral problems in relation to Information Technology (IT) require new theories of ethics. In recent years, an interesting new theory to address such concerns has been proposed, namely the theory of Information Ethics (IE). Despite the promise of IE, the theory has not enjoyed public discussion. The aim of this paper is to initiate such discussion by critically evaluating the theory of IE.

An important question one can ask of ethical theories is whether and how they aim to raise claims to universality. This refers to the subject area that they intend to describe or govern and also to the question whether they claim to be binding for all (moral) agents. This paper discusses the question of universality of Luciano Floridi’s information ethics (IE). This is done by introducing the theory and discussing its conceptual foundations and applications. The emphasis will be (...) placed on the ontological grounding of IE. IE’s claims to universality will be contrasted with those raised by discourse ethics. This comparison of two pertinent ethical theories allows for a critical discussion of areas where IE currently has room for elaboration and development. (shrink)

This paper presents the first bibliometric mapping analysis of the field of computer and information ethics (C&IE). It provides a map of the relations between 400 key terms in the field. This term map can be used to get an overview of concepts and topics in the field and to identify relations between information and communication technology concepts on the one hand and ethical concepts on the other hand. To produce the term map, a data set of (...) over thousand articles published in leading journals and conference proceedings in the C&IE field was constructed. With the help of various computer algorithms, key terms were identified in the titles and abstracts of the articles and co-occurrence frequencies of these key terms were calculated. Based on the co-occurrence frequencies, the term map was constructed. This was done using a computer program called VOSviewer. The term map provides a visual representation of the C&IE field and, more specifically, of the organization of the field around three main concepts, namely privacy, ethics, and the Internet. (shrink)

I describe the emergence of Floridi’s philosophy of information (PI) and information ethics (IE) against the larger backdrop of Information and Computer Ethics (ICE). Among their many strengths, PI and IE offer promising metaphysical and ethical frameworks for a global ICE that holds together globally shared norms with the irreducible differences that define local cultural and ethical traditions. I then review the major defenses and critiques of PI and IE offered by contributors to this special (...) issue, and highlight Floridi’s responses to especially two central problems – the charge of relativism and the meaning of ‹entropy’ in IE. These responses, conjoined with several elaborations of PI and IE offered here by diverse contributors, including important connections with the naturalistic philosophies of Spinoza and other major Western and Eastern figures, thus issue in an expanded and more refined version of PI and IE – one still facing important questions as well as possibilities for further development. (shrink)

The work of Luciano Floridi lies at the interface of philosophy, information science and technology, and ethics, an intersection whose existence and significance he was one of the first to establish. His closely related concepts of a philosophy of information (PI), informational structural realism, information logic (IL), and information ethics (IE) provide a new ontological perspective from which moral concerns can be addressed, especially but not limited to those arising in connection with the new (...) information and communication technologies. In this paper, I relate Floridi's approach to another novel perspective, namely, that of an extension of logic to complex real processes, including those of information production and transfer. This non-propositional, non-truth-functional logic (logic in reality (LIR)) is grounded in the fundamental dualism (dynamic opposition) inherent in energy and accordingly present at all levels of reality. The LIR description of the dynamics of processes and their evolution is relevant to what Floridi refers to as the possible non-linguistic aspects of information. It suggests answers to some of Floridi's “outstanding problems” in PI related to the ontological status of information and how it is used in cognition. Floridi's IL retains the formal structure of the doxastic and epistemic logics from which he correctly distinguishes it and is the basis for his conceptual PI. However, LIR fulfills Floridi's implied requirement that logic be regarded as a natural phenomenon dealing with other natural phenomena, recovering its original philosophical function. LIR provides a logical foundation for discussion of ethical questions based on kinds of information that complements IL. Both are reconsiderations of logic that, as Marijuan suggests, may be necessary for the advancement of information technology in an ethical direction (cf. also Brenner). IE focuses on entities as constituted by information in an overall strategy that generalizes the concept of moral agents. LIR and its related ontology naturalize critical aspects of Floridi's theses, especially, the moral value of being as such and a non-separable joint responsibility of individuals and groups. I compare IE to other current approaches to ethics and information technology (e.g., phenomenological and social constructivist). Ethical information is defined “ecologically” in process terms as reality in a physical space (cf. Floridi), with an intentional “valence,” positive and negative, in the morally valued interaction between producer and receiver. LIR is neither topic-neutral nor context independent and can support an ethics involving apparently contradictory perspectives (e.g., internalist and externalist). Ethics involves practical reasoning, and unlike standard logics, LIR supports Magnani's approach to abductive reasoning in rational moral decision making. The basis of moral responsibility and the consequent behavior of individuals involved in information and communications technologies is the same logical–metaphysical principle of dynamic opposition instantiated at other levels of reality. The way moral responsibilities are actively accepted (or not) by individuals supervenes on their primitive psychological structure, which in turn reflects an evolutionary development grounded in the fundamental dualism of the physical world. The paper concludes with some suggestions of areas of philosophical research, such as causality, identity, and the ontological turn, where convergence of the Floridi and LIR approaches might be envisaged. Their overall motivation is the same, namely, the development of strategies for reinforcing and increasing ethical sensitivity wherever possible. The ethical information concept outlined in the paper supports the function of IE, assigned to it by Floridi, of potentially determining what is right and what is wrong. (shrink)

This paper considers the ways that Information Ethics (IE) treats things. A number of critics have focused on IE’s move away from anthropocentrism to include non-humans on an equal basis in moral thinking. I enlist Actor Network Theory, Dennett’s views on ‹as if’ intentionality and Magnani’s characterization of ‹moral mediators’. Although they demonstrate different philosophical pedigrees, I argue that these three theories can be pressed into service in defence of IE’s treatment of things. Indeed the support they lend (...) to the extension of moral status to non-human objects can be seen as part of a trend towards the accommodation of non-humans into our moral and social networks. A number of parallels are drawn between philosophical arguments over artificial intelligence and information ethics. (shrink)

What is the most general common set of attributes that characterises something as intrinsically valuable and hence as subject to some moral respect, and without which something would rightly be considered intrinsically worthless or even positively unworthy and therefore rightly to be disrespected in itself? This paper develops and supports the thesis that the minimal condition of possibility of an entity's least intrinsic value is to be identified with its ontological status as an information object. All entities, even when (...) interpreted as only clusters of information, still have a minimal moral worth qua information objects and so may deserve to be respected. The paper is organised into four main sections. Section 1 models moral action as an information system using the object-oriented programming methodology (OOP). Section 2 addresses the question of what role the several components constituting the moral system can have in an ethical analysis. If they can play only an instrumental role, then Computer Ethics (CE) is probably bound to remain at most a practical, field-dependent, applied or professional ethics. However, Computer Ethics can give rise to a macroethical approach, namely Information Ethics (IE), if one can show that ethical concern should be extended to include not only human, animal or biological entities, but also information objects. The following two sections show how this minimalist level of analysis can be achieved. Section 3 provides an axiological analysis of information objects. It criticises the Kantian approach to the concept of intrinsic value and shows that it can be improved by using the methodology introduced in the first section. The solution of the Kantian problem prompts the reformulation of the key question concerning the moral worth of an entity: what is the intrinsic value of x qua an object constituted by its inherited attributes? In answering this question, it is argued that entities can share different observable properties depending on the level of abstraction adopted,and that it is still possible to speak of moral value even at the highest level of ontological abstraction represented by the informational analysis. Section 4 develops a minimalist axiology based on the concept of information object. It further supports IE's position by addressing five objections that may undermine its acceptability. (shrink)

Moral reasoning traditionally distinguishes two types of evil:moral (ME) and natural (NE). The standard view is that ME is the product of human agency and so includes phenomena such as war,torture and psychological cruelty; that NE is the product of nonhuman agency, and so includes natural disasters such as earthquakes, floods, disease and famine; and finally, that more complex cases are appropriately analysed as a combination of ME and NE. Recently, as a result of developments in autonomous agents in cyberspace, (...) a new class of interesting and important examples of hybrid evil has come to light. In this paper, it is called artificial evil (AE) and a case is made for considering it to complement ME and NE to produce a more adequate taxonomy. By isolating the features that have led to the appearance of AE, cyberspace is characterised as a self-contained environment that forms the essential component in any foundation of the emerging field of Computer Ethics (CE). It is argued that this goes someway towards providing a methodological explanation of why cyberspace is central to so many of CE's concerns; and it is shown how notions of good and evil can be formulated in cyberspace. Of considerable interest is how the propensity for an agent's action to be morally good or evil can be determined even in the absence of biologically sentient participants and thus allows artificial agents not only to perpetrate evil (and fort that matter good) but conversely to `receive' or `suffer from' it. The thesis defended is that the notion of entropy structure, which encapsulates human value judgement concerning cyberspace in a formal mathematical definition, is sufficient to achieve this purpose and, moreover, that the concept of AE can be determined formally, by mathematical methods. A consequence of this approach is that the debate on whether CE should be considered unique, and hence developed as a Macroethics, may be viewed, constructively,in an alternative manner. The case is made that whilst CE issues are not uncontroversially unique, they are sufficiently novel to render inadequate the approach of standard Macroethics such as Utilitarianism and Deontologism and hence to prompt the search for a robust ethical theory that can deal with them successfully. The name Information Ethics (IE) is proposed for that theory. Itis argued that the uniqueness of IE is justified by its being non-biologically biased and patient-oriented: IE is an Environmental Macroethics based on the concept of data entity rather than life. It follows that the novelty of CE issues such as AE can be appreciated properly because IE provides a new perspective (though not vice versa). In light of the discussion provided in this paper, it is concluded that Computer Ethics is worthy of independent study because it requires its own application-specific knowledge and is capable of supporting a methodological foundation, Information Ethics. (shrink)

In this paper, a critique will be developed and an alternative proposed to Luciano Floridi’s approach to Information Ethics (IE). IE is a macroethical theory that is to both serve as a foundation for computer ethics and to guide our overall moral attitude towards the world. The central claims of IE are that everything that exists can be described as an information object, and that all information objects, qua information objects, have intrinsic value and (...) are therefore deserving of moral respect. In my critique of IE, I will argue that Floridi has presented no convincing arguments that everything that exists has some minimal amount of intrinsic value. I will argue, however, that his theory could be salvaged in large part if it were modified from a value-based into a respect-based theory, according to which many (but not all) inanimate things in the world deserve moral respect, not because of intrinsic value, but because of their (potential) extrinsic, instrumental or emotional value for persons. (shrink)

The paper provides a critical review of the debate on the foundations of Computer Ethics (CE). Starting from a discussion of Moor’s classic interpretation of the need for CE caused by a policy and conceptual vacuum, five positions in the literature are identified and discussed: the “no resolution approach”, according to which CE can have no foundation; the professional approach, according to which CE is solely a professional ethics; the radical approach, according to which CE deals with absolutely (...) unique issues, in need of a unique approach; the conservative approach, according to which CE is only a particular applied ethics, discussing new species of traditional moral issues; and the innovative approach, according to which theoretical CE can expand the metaethical discourse with a substantially new perspective. In the course of the analysis, it is argued that, although CE issues are not uncontroversially unique, they are sufficiently novel to render inadequate the adoption of standard macroethics, such as Utilitarianism and Deontologism, as the foundation of CE and hence to prompt the search for a robust ethical theory. Information Ethics (IE) is proposed for that theory, as the satisfactory foundation for CE. IE is characterised as a biologically unbiased extension of environmental ethics, based on the concepts of information object/infosphere/entropy rather than life/ecosystem/pain. In light of the discussion provided in this paper, it is suggested that CE is worthy of independent study because it requires its own application-specific knowledge and is capable of supporting a methodological foundation, IE. (shrink)

The article contains the replies to the collection of contributions discussing my research on the philosophy of information.

PurposeThe paper aims to introduce the Islamic “legal system of Shari'ah laws and ethics” and its process of resolving ethical quandaries as applied in the field of information ethics.Design/methodology/approachThe paper first introduces some of the intricacy of the Islamic Shari'ah laws and ethics and then to reason its applicability in the field of IE, a scenario is discussed to illustrate how Islamic legal maxims maybe implemented to arrive at a moral judgment.FindingsThe discussed scenario shows glimpses of (...) the Shari'ah laws and reasoning processes of the Islamic ethical methodology for deriving moral judgment as used in the Muslim world to bring benefits and repel harms. The system respects both collective and individual's perspectives and can be conceived as being a synthesis between deontological, consequentialist and virtue ethics theories.Practical implicationsThe paper is sufficient to give the reader a feel for its potential to encourage further research in the area of resolving ethical issues, specifically for those who are calling for universal ethical theories to avoid moral imperialism.Originality/valueEthical researchers have gone back in history as far as Aristotle and Descartes to address ethical issues arising from the development and application of information and computer technologies. One area of ethics rarely touched by ethical theorists is the religious laws and ethics of Islam. The paper introduces Islam and its sources of knowledge, which are the foundation for a large set of legal maxims used to govern ethical decisions. (shrink)

Moral reasoning traditionally distinguishes two types of evil: moral and natural. The standard view is that ME is the product of human agency and so includes phenomena such as war, torture and psychological cruelty; that NE is the product of nonhuman agency, and so includes natural disasters such as earthquakes, floods, disease and famine; and finally, that more complex cases are appropriately analysed as a combination of ME and NE. Recently, as a result of developments in autonomous agents in cyberspace, (...) a new class of interesting and important examples of hybrid evil has come to light. In this paper, it is called artificial evil and a case is made for considering it to complement ME and NE to produce a more adequate taxonomy. By isolating the features that have led to the appearance of AE, cyberspace is characterised as a self-contained environment that forms the essential component in any foundation of the emerging field of Computer Ethics. It is argued that this goes some way towards providing a methodological explanation of why cyberspace is central to so many of CE’s concerns; and it is shown how notions of good and evil can be formulated in cyberspace. Of considerable interest is how the propensity for an agent’s action to be morally good or evil can be determined even in the absence of biologically sentient participants and thus allows artificial agents not only to perpetrate evil but conversely to ‘receive’ or ‘suffer from’ it. The thesis defended is that the notion of entropy structure, which encapsulates human value judgement concerning cyberspace in a formal mathematical definition, is sufficient to achieve this purpose and, moreover, that the concept of AE can be determined formally, by mathematical methods. A consequence of this approach is that the debate on whether CE should be considered unique, and hence developed as a Macroethics, may be viewed, constructively, in an alternative manner. The case is made that whilst CE issues are not uncontroversially unique, they are sufficiently novel to render inadequate the approach of standard Macroethics such as Utilitarianism and Deontologism and hence to prompt the search for a robust ethical theory that can deal with them successfully. The name Information Ethics is proposed for that theory. It is argued that the uniqueness of IE is justified by its being non-biologically biased and patient-oriented: IE is an Environmental Macroethics based on the concept of data entity rather than life. It follows that the novelty of CE issues such as AE can be appreciated properly because IE provides a new perspective. In light of the discussion provided in this paper, it is concluded that Computer Ethics is worthy of independent study because it requires its own application-specific knowledge and is capable of supporting a methodological foundation, Information Ethics. (shrink)

SIRI would like to acknowledge with regret that my sentence, of which Ms Stevens quotes half, is convoluted. A book review1 is necessarily condensed and perhaps if it creates a problem it is best to read the book. But, in the complex legal, moral and ethical dilemmas arising in subjects such as confidentiality, it is highly dangerous to take half a sentence out of context and use it to discuss a separate agenda, ie secrecy within the National Health Service .I (...) would …. (shrink)

Hojjat Soofi successfully developed a novel dementia-specific model of human flourishing.1 Based on a modified version of Nussbaum’s account of dignity (ie, the theoretical framework of the capabilities approach), and integrated with Kitwood and Bredin’s empirically informed list of indicators of well-being for people with dementia (ie, the field of empirically informed ethics), this model provides guidance on how to actually care for people with dementia in real-life practices, according to the moral requirements of respect for dignity. More specifically, (...) we deem the contributive value of the model to be threefold. (1) It is a successful specification and contextualisation of Nussbaum’s original list of capabilities in the context of dementia care. (2) The table clearly distinguishes between dementia-specific capabilities and their possibly dementia-related progressive deprivation (ie, the internal conditions), and the possible external setbacks or facilitators for human flourishing. (3) The model is proposed as being open to include new and additional insights from further empirical research on what forms of caregiving do (or do not) align with respect for the dignity of people with dementia. In our commentary, we want to focus on the source of dignity, that is, the locus and starting point of our moral requirements on which the author takes an explicit stance. First of all, by being founded on the list of dementia-specific capabilities, Soofi’s model places the source of our moral requirements of respect for the dignity of people with dementia within the persons themselves, ‘having some of the basis capabilities listed’ (p.6). This, in turn, brings classic discussions concerning a …. (shrink)

Background: Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results. Methods: To inform policy on disclosure of infant sickle cell disorder (SCD) carrier results, a mixed-methods study of healthcare providers was conducted in Ontario, Canada, to understand attitudes regarding result (...) management using a cross-sectional survey (N = 1615) and semistructured interviews (N = 42). Results: Agreement to reasons favouring disclosure of SCD carrier results was high (65.1%–92.7%) and to reasons opposing disclosure was low (4.1%–18.1%). Genetics professionals expressed less support for arguments favouring disclosure (35.3%–78.8%), and more agreement with arguments opposing disclosure (15.7%–51.9%). A slim majority of genetics professionals (51.9%) agreed that a reason to avoid disclosure was the importance of allowing the child to decide to receive results. Qualitatively, there was a perceived “duty” to disclose, that if the clinician possessed the information, the clinician could not withhold it. Discussion: While a majority of respondents perceived a duty to disclose the incidental results of newborn screening, the policy implications of these attitudes are not obvious. In particular, policy must balance descriptive ethics (ie, what providers believe) and normative ethics (ie, what duty-based principles oblige), address dissenting opinion and consider the relevance of moral principles grounded in clinical obligations for public health initiatives. (shrink)

Recently, the Israel National Bioethics Council (INBC) issued recommendations permitting egg freezing to prevent both disease- and age-related fertility decline. The INBC report forms the basis of Israel's new policy, being one of the first countries to regulate and authorise egg freezing for what it considers to be non-medical (ie, social) uses. The ethical discussion in the INBC report is reviewed and compared with the scant ethical discourse in the academic literature on egg freezing as a means of preventing age-related (...) loss of fertility. We argue that both the INBC recommendations and the bioethical academic discourse on egg freezing are grounded in liberal ideology, which views technology as primarily enabling. Accordingly, they promote ‘individual autonomy’ as exercised through informed consent. Our study suggests that a relational approach to autonomy may be a more suitable model for considering women's choices about egg freezing. (shrink)

Introduction Scholars have debated how to define coercion and undue influence, but how institutional review boards (IRBs) view and make decisions about these issues in actual cases has not been explored. Methods I contacted the leadership of 60 US IRBs (every fourth one in the list of the top 240 institutions by National Institutes of Health funding), and interviewed 39 IRB leaders or administrators from 34 of these institutions (response rate=55%), and 7 members. Results IRBs wrestled with defining of ‘coercion’ (...) and ‘undue inducement’, most notably in deciding about participant compensation. IRBs often use these terms synonymously and define undue inducement in varying ways, often wrestling with these issues, relying on ‘gut feelings’, and seeking compromises. Ambiguities arose, partly reflecting underlying tensions: whether subjects should ‘get paid’ versus ‘volunteer’ (ie, whether subjects should be motivated by compensation vs altruism), and whether subjects should be paid differently based on income, given possible resultant selection bias. Lack of consistent standards emerged between and even on single IRBs. Questions arose concerning certain aspects and types of studies; for example, how to view and weigh providing free care in research, whether and how recruitment flyers should mention compensation, and how to avoid coercion in paediatric, developing world, or students research. Conclusions These data, the first to probe qualitatively how IRBs view and approach questions about coercion, undue influence and participant compensation, and to examine how IRBs have reviewed actual cases, reveal several critical ambiguities and dilemmas, and have vital implications for future practice, education, policy and research. (shrink)

The idea of a right not to know (RNTK) emerged in the late 20th century, largely in response to the early incorporation of genetic testing into clinical care. While a few commentators took a more absolute view about the strength of the RNTK, most of the scholarship was openly sceptical of the concept, or at least was willing to acknowledge that the RNTK was defeasible.1 After two decades of relative quiet, it was surprising, then, that the RNTK reappeared with a (...) seemingly widespread consensus that it deserved to be treated as an absolute right. In response to the American College of Medical Genetics and Genomics recommendation2 to actively search for a limited set of high-value medical variants as a default (ie, without soliciting the patient’s preference to know or not know that information) many bioethics commentators came forward to endorse a strong RNTK.3 While ‘deliberate ignorance’ is a complicated moral and psychological concept,4 I was and remain sceptical of a strong RNTK in all cases, and largely support the novel arguments put forth by Ben Davies. But he makes two moves that deserve additional discussion and analysis. Specifically, I have concerns about conflating the provision of medical information with the separate decision about whether or not to act on …. (shrink)

Many patients believe that cardiopulmonary resuscitation (CPR) is more likely to be successful than it really is in clinical practice. Even when working with accurate information, some nevertheless remain resolute in demanding maximal treatment. They maintain that even if survival after cardiac arrest with CPR is extremely low, the fact remains that it is still greater than the probability of survival after cardiac arrestwithoutCPR (ie, zero). Without realising it, this line of reasoning is strikingly similar to Pascal’s Wager, a (...) Renaissance-era argument for accepting the proposition for God’s existence. But while the original argument is quite logical—if not universally compelling—the modern variant makes several erroneous assumptions. The authors here present a case of a patient who unwittingly appeals to Pascal’s Wager to explain his request for maximal treatment, in order to highlight the crucial divergences from the original Wager. In understanding the faulty assumptions inherent in the application of Pascal’s Wager to code status decisions—and identifying the underlying motivations which the Wager serves to confirm—providers can better ensure that the true values and preferences of patients are upheld. (shrink)

Individuals unvaccinated against COVID-19 (C19) experienced prejudice and blame for the pandemic. Because people vastly overestimate C19 risks, we examined whether these negative judgements could be partially understood as a form of scapegoating (ie, blaming a group unfairly for an undesirable outcome) and whether political ideology (previously shown to shape risk perceptions in the USA) moderates scapegoating of the unvaccinated. We grounded our analyses in scapegoating literature and risk perception during C19. We obtained support for our speculations through two vignette-based (...) studies conducted in the USA in early 2022. We varied the risk profiles (age, prior infection, comorbidities) and vaccination statuses of vignette characters (eg, vaccinated, vaccinated without recent boosters, unvaccinated, unvaccinated-recovered), while keeping all other information constant. We observed that people hold the unvaccinated (vs vaccinated) more responsible for negative pandemic outcomes and that political ideology moderated these effects: liberals (vs conservatives) were more likely to scapegoat the unvaccinated (vs vaccinated), even when presented with information challenging the culpability of the unvaccinated known at the time of data collection (eg, natural immunity, availability of vaccines, time since last vaccination). These findings support a scapegoating explanation for a specific group-based prejudice that emerged during the C19 pandemic. We encourage medical ethicists to examine the negative consequences of significant C19 risk overestimation among the public. The public needs accurate information about health issues. That may involve combating misinformation that overestimates and underestimates disease risk with similar vigilance to error. (shrink)

Objectives Disclosures of funding sources and conflicts of interests (COI) in published peer-reviewed journal articles have recently begun to receive some attention, but many critical questions remain, for example, how often such reporting occurs concerning research conducted in the developing world and what factors may be involved. Design Of all articles indexed in Medline reporting on human subject HIV research in 2007 conducted in four countries (India, Thailand, Nigeria and Uganda), this study explored how many disclosed a funding source and (...) COI, and what factors are involved. Results Of 221 articles that met the criteria, 67.9% (150) disclosed the presence or absence of a funding source, but only 20% (44) disclosed COI. Studies from Uganda were more likely, and those from Nigeria were less likely to mention a funding source (p<0.001). Of articles in journals that had adopted International Committee of Medical Journal Editors (ICMJE) guidelines, 56% did not disclose COI. Disclosure of funding was more likely when: ≥50% of the authors and the corresponding author were from the sponsoring country, the sponsor country was the USA, and the articles were published in journals in which more of the editors were from the sponsoring countries. Conclusions Of the published studies examined, over a third did not disclose funding source (ie, whether or not there was a funding source) and 80% did not disclose whether COI existed. Most articles in ICMJE-affiliated journals did not disclose COI. These data suggest the need to consider alteration of policies to require that published articles include funding and COI information, to allow readers to assess articles as fully as possible. (shrink)