A response to pressures on pension finance caused by population ageing and economic turbulence has been a substantial move from traditional defined-benefit plans in which, at least in principle, all risk falls on the contributions side, to defined-contribution plans in which risk during accumulation all falls on the benefits side. This paper argues that both designs are ‘corner solutions’ and hence generally suboptimal, and goes on to set out a range of designs that offer different ways of (...) class='Hi'>sharing risk among workers, employers, future pensioners and current pensioners. (shrink)

The recent financial crises indicated the need to reinforce corporate governance mechanisms in emerging and developing market economies. Corporate governance refers to all the factors that affect firm processes. Firms must avoid debt financing instruments and adopt financing instruments that allow for “risk-sharing” rather than “risk-shifting” because all recent financial crises were, in essence, debt crises. The primary objective of this paper is to examine the principles of risk-sharing promoted by Islamic finance and study their (...) implications for corporate governance. The secondary objective of this paper is to propose a pricing model for a new risk-sharing financial instrument that was recently discussed by Zarka and Al-Suhaibani. We study the implications of this new instrument as a powerful tool for corporate governance in the case of Islamic markets. We explain the possible contribution of IPS to agency cost reduction, Sharia screening costs and ethical corporate governance. (shrink)

This study explains risk transfer, associated with debt-basedfinancing, as the main cause of financial crises in the world. It presents the casefor a financial architecture based on risk sharing that, in turn, is likely to makethe financial system less fragile and more stable. This study also highlights thesignificance of Islamic finance in this regard.

This paper is about participation in efficient risk sharing among agents who have ambiguous beliefs about uncertain states of nature. The question we ask is whether and how can ambiguous beliefs give rise to some agents not participating in efficient risk sharing. Ambiguity of beliefs is described by the multiple-prior expected utility of Gilboa and Schmeidler, or the variational preferences of Maccheroni et al. :1447–1498, 2006). The main result says that if the aggregate risk is (...) relatively small, then the agents whose beliefs are the most ambiguous do not participate in risk sharing. The higher the ambiguity of those agents’ beliefs, the more likely is their non-participation. Another factor making non-participation more likely is low risk aversion of agents whose beliefs are less ambiguous. We discuss implications of our results on agents’ participation in trade in equilibrium in assets markets. (shrink)

Under conditions with a low level of available genetic information, mutualistic private insurance markets will often create broadly just outcomes, even if by accident rather than by design. Normatively acceptable outcomes of this kind would come under threat if insurers were to have increased access to genetic information with substantial predictive content.1 As the availability of relevant individual genetic information grows, mutualistic forms of market-based insurance face a dilemma between either sacrificing individuals’ interests in genetic privacy, or creating conditions for (...) market failure due to adverse selection. My view is therefore that we have good reason to shift towards more solidaristic forms of ‘risk-sharing institutions’ with regard to functions such as life insurance and critical illness insurance, as a way of resolving normative tensions between values of equality, privacy, non-discrimination and autonomy. Such a position, I have argued, does not depend on endorsing any particular conception of social justice, but can be defended on the basis of a number of different plausible accounts of what justice demands.1 Jonathan Pugh argues against my endorsement of a shift towards solidaristic, non-market risk-sharing institutions, and instead argues broadly in favour of the status quo. He holds that it counts against my proposals that they ‘have wide-ranging and highly revisionary implications’, and argues that my approach is mistaken in relying on ‘a single contestable theory’. Pugh offers a purportedly less contestable account of the relevant normative considerations underlying insurance regimes, composed of three …. (shrink)

Existing accounts of social insurance tend to treat social risks as given and ask whether it is justified for the state to deal with these risks for its citizens. They ignore that many common risks are in fact imposed on citizens as a byproduct of the institutional choices of the society, which call for justification in the first place. In this paper, I use the Scanlonian contractualist framework to develop an account of just social risk imposition which implies a (...) demand for fair risk sharing by all members of a society. In particular, I defend a compensation principle which requires that compensation be paid to victims of risk materialisation. This duty of paying should be shared by all those who benefit from the imposition of the relevant risk. I suggest that this provides a case for social insurance as a way of fairly sharing the burden of social risks. (shrink)

The most common solutions to the problem of high pharmaceutical prices have taken the form of regulations, price negotiations, or changes in drug coverage by insurers. These measures for the most part transfer the burden of drug expenditures between pharmaceutical companies and payers or between payers. The aim of this study is to propose an alternative model for the relationship between the main stakeholders involved in the price setting and purchasing of pharmaceuticals, one that encourages a more cooperative approach. We (...) draw from principles of ethics and health economics and apply them to the context of the pharmaceutical industry. The model prioritises two objectives, to make drugs financially accessible to the patients who need them, and to keep pharmaceutical companies viable and profitable. It is centered around the sharing of financial risk between the main stakeholders, which we describe as ‘enlightened risk sharing’. After establishing the foundations of this model, we expand on the type of policies that can follow these principles with current day examples. (shrink)

Sharing within communities has gained popularity in recent years. However, taking part in a community also comes with a certain amount of risk. This perceived amount of risk can be contained by regulations within a community as well as by potential participants’ trust in the community and the other members. We argue for a relation between regulation and the willingness to take the risk of joining a sharing community with trust as mediator. Thereby, we distinguish (...) between two kinds of regulation (soft and harsh regulation) and two kinds of trust (implicit and reason-based trust) on two different levels (vertical and horizontal trust). In one laboratory and one online experiment with overall 432 participants, we found that the compound of high soft and low harsh regulation increases participants’ willingness to take the risk of participation and the effect of soft regulation is mediated mainly by vertical and horizontal reason-based trust. Based on our results, we encourage sharing communities to count on soft regulation in order to increase potential members’ trust in the community and therefore take the risk to participate. (shrink)

Life-Sharing for a Creative Tomorrow is a study of human beings as arising from Nature, yet transcending it; related to each other as members of the human race, yet free to choose personal ties with and commitment to others in interpersonal relations. The trials and risks of love, the specific characterization of being human within moral and aesthetic expressions are considered in the context of the communal social structures in the world. The truth and integrity of selfhood, vis-à-vis psychological (...) influences and outside pressures is presented as the necessary safeguard of one's identity, while sharing a creative life of beauty and wisdom, in solidarity with Others, for a truly human future. (shrink)

Purpose This study aims to ascertain the impact of data collecting awareness on perceived information security concerns and information-sharing behavior on social networking sites. Design/methodology/approach Based on communication privacy management theory, the study forecasted the relationship between information-sharing behavior and awareness of data collecting purposes, data collection tactics and perceived security risk using structural equation modeling analysis and one-way ANOVA. The sample size of 521 young social media users in Vietnam, ages 18 to 34, was made up (...) of 26.7% men and 73.3% women. When constructing the questionnaire survey method with lone source respondents, the individual’s unique awareness and experiences with using online social networks (OSNs) were taken into account. Findings The results of the investigation demonstrate a significant relationship between information-sharing and awareness of data collecting, perceptions of information security threats and behavior. Social media users have used OSN privacy settings and paid attention to the sharing restriction because they are concerned about data harvesting. Research limitations/implications This study was conducted among young Vietnamese social media users, reflecting specific characteristics prevalent in the Vietnamese environment, and hence may be invalid in other nations’ circumstances. Practical implications Social media platform providers should improve user connectivity by implementing transparent privacy policies that allow users to choose how their data are used; have clear privacy statements and specific policies governing the use of social media users’ data that respect users’ consent to use their data; and thoroughly communicate how they collect and use user data while promptly detecting any potential vulnerabilities within their systems. Originality/value The authors ascertain that the material presented in this manuscript will not infringe upon any statutory copyright and that the manuscript will not be submitted elsewhere while under Journal of Information, Communication and Ethics in Society review. (shrink)

Solidarity as a social phenomenon means a sharing of feelings, interests, risks and responsibilities. The Western-European Welfare State can be seen as an organized system of solidarity, historically grown from group solidarity among workers, later between workers and employers, moving towards solidarity between larger social groups: between healthy people and the sick, between the young and the elderly, between the employed and the unemployed. This sharing of risks at a societal level however, has revealed the risks of (...) class='Hi'>sharing. In the postwar development of the welfare state, solidarity has been organized mainly in administrative forms, run by anonymous bureaucracies and giving way to free riders and calculative citizens. This article describes this development and provides arguments for a reorientation of the welfare state and for the re-allocation of rights, risks and responsibilities. (shrink)

The concept of dual-use encapsulates the potential for well-intentioned, beneficial scientific research to also be misused by a third party for malicious ends. The concept of dual-use challenges scientists to look beyond the immediate outcomes of their research and to develop an awareness of possible future (mis)uses of scientific research. Since 2001 much attention has been paid to the possible need to regulate the dual-use potential of the life sciences. Regulation initiatives fall under two broad categories—those that develop the ethical (...) education of scientists and foster an awareness and responsibility of dual-use issues, and those which assess the regulation of information being generated by current research. Both types of initiatives are premised on a cautious, risk-adverse philosophy which advocates careful examination of all future endpoints of research endeavors. This caution advocated within initiatives such as pre-publication review of journal articles contrasts to the obligation to share underpinning data sharing discussions. As the dual-use debate has yet to make a significant impact on data sharing discussions (and vice versa) it is possible that these two areas of knowledge control may present areas of ethical conflict for scientists, and thus need to be more closely examined. This paper examines the tension between the obligation to share exemplified by data sharing principles and the concerns raised by the risk-cautious culture of the dual-use debates. The paper concludes by reflecting on the issues of responsibility as raised by dual-use as relating to data sharing, such as the chain of custody for shared data. (shrink)

How does Creating Shared Value (CSV) differ from Corporate Social Responsibility (CSR)? How can universities teach CSV to students? The aim of this study is to present the case of the Shared Value Living Lab (SVLL) recently carried out at the University of Torino (UniTo), a large Italian public university. Specifically, the paper analyzes CSV related arguments such as building ecosystems and collective impact, and by questioning the role of experiential learning in adult education. The transformative learning theory of Mezirow (...) (2000) assists the discussion and interpretation of the results derived from this research from an intrinsic perspective, as the researchers “interacted” with the participants. The risks and opportunities of teaching CSV concepts are presented side by side with the strengths and weaknesses of innovative learning tools that have already been adopted by universities and business schools. The study contributes to the current literature by showing how students can reframe the problem of CSV, escaping from ordinary meaning schemes. The interaction between the researchers, the students, and the local actors is atypical of a generalist public university. It is also a good example of a triple helix collaboration that can be implemented in other areas of education research. (shrink)

Background: Information sharing is one of the most important means of public health nurses collaborating with other healthcare professionals and community members. There are complicated ethical issues in the process. Research objectives: To describe the ethical dilemmas associated with client information sharing that Japanese public health nurses experience in daily practice and to clarify their decision-making process to resolve these dilemmas. Research design: Data were collected using a three-phase consensus method consisting of semi-structured interviews, self-administered questionnaires and a (...) group interview. Participants and research context: We surveyed administrative public health nurses in Shizuoka Prefecture, Japan. The semi-structured interviews were carried out with 12 administrative public health nurses, and the self-administered questionnaires were sent to all 899 administrative public health nurses. The group interview was carried out with eight administrative public health nurses. Ethical considerations: Ethical approval was granted by the ethics committee of the School of Health Sciences, Nagoya University, Japan (8-158, 9-130). Findings: Information-sharing ethical dilemmas occurred most often when clients’ decisions did not coincide with the nurses’ own professional assessments, particularly when they faced clinical issues that were inherently ambiguous. In their decision-making processes, nurses prioritised ‘protection of health and life’. Discussion: These findings suggest that, above all, they sought to address urgent risks to clients’ lives while upholding the principle of client autonomy as much as possible. In such cases, the nurses made decisions regarding whether to share information about the client depending on the individual situation. Conclusion: Public health nurses should protect the client’s health while taking into consideration their relationship with the client. (shrink)

Community shared agriculture is a concept that brings food producers and consumers together in a relationship that supports values associated with sustainable agriculture, community development, and food security. At the heart of the concept is the notion of sharing. Participants share the real costs of food production through fair prices for the farmer and by assuming part of the risk of poor harvests. They also share the rewards that come through a seasons supply of fresh produce, the development (...) of fellowship, and the knowledge that they are part of an effort to “think globally, act locally.”. (shrink)

Data-sharing among genomic researchers is promoted for its potential to accelerate our understanding of the molecular basis of cancer. However, with genomic data sharing the risks of re-identifying study participants, revealing personal genomic information and data misuse might increase. This study aims at exploring perceptions of patients and physicians in Oncology regarding their assessment of the informational risks resulting from participating in whole genomic research studies in order to improve the informed consent process. For this purpose, we conducted (...) a qualitative focus group study at the National Center for Tumor Diseases (NCT). Patients and oncologists assessed the informational risks either as minimal or as greater than minimal, depending on the context factors of occupational status, age, and patients’ prognosis. Interestingly, even patients who assumed a greater risk did not refrain from participating in genomic research, provided that certain informational and institutional safeguards are implemented. Moreover, they expected comprehensive disclosure of the risks resulting from genomic data sharing. These results suggest (1) comprehensive disclosure of the risks of genomic research to potential study participants in genomic research to facilitate risk assessment and sound decision making, (2) establishing independent governance entities in order to minimize the informational risks of genomic research, and (3) implementing data sharing policies which offer guidance for physicians and researchers involved in genomic research. (shrink)

Returning research results to participants is recognised as an obligation that researchers should always try to fulfil. But can we ascribe the same obligation to researchers who conduct genomics research producing only aggregated findings? And what about genomics research conducted in developing countries? This paper considers Beskow's et al. argument that aggregated findings should also be returned to research participants. This recommendation is examined in the context of genomics research conducted in developing countries. The risks and benefits of attempting such (...) an exercise are identified, and suggestions on ways to avoid some of the challenges are proposed. I argue that disseminating the findings of genomic research to participating communities should be seen as sharing knowledge rather than returning results. Calling the dissemination of aggregate, population level information returning results can be confusing and misleading as participants might expect to receive individual level information. Talking about sharing knowledge is a more appropriate way of expressing and communicating the outcome of population genomic research. Considering the knowledge produced by genomics research a worthwhile output that should be shared with the participants and approaching the exercise as a ‘sharing of knowledge’, could help mitigate the risks of unrealistic expectations and misunderstanding of findings, whilst promoting trusting and long lasting relationships with the participating communities. (shrink)

Data-sharing among genomic researchers is promoted for its potential to accelerate our understanding of the molecular basis of cancer. However, with genomic data sharing the risks of re-identifying study participants, revealing personal genomic information and data misuse might increase. This study aims at exploring perceptions of patients and physicians in Oncology regarding their assessment of the informational risks resulting from participating in whole genomic research studies in order to improve the informed consent process. For this purpose, we conducted (...) a qualitative focus group study at the National Center for Tumor Diseases. Patients and oncologists assessed the informational risks either as minimal or as greater than minimal, depending on the context factors of occupational status, age, and patients’ prognosis. Interestingly, even patients who assumed a greater risk did not refrain from participating in genomic research, provided that certain informational and institutional safeguards are implemented. Moreover, they expected comprehensive disclosure of the risks resulting from genomic data sharing. These results suggest comprehensive disclosure of the risks of genomic research to potential study participants in genomic research to facilitate risk assessment and sound decision making, establishing independent governance entities in order to minimize the informational risks of genomic research, and implementing data sharing policies which offer guidance for physicians and researchers involved in genomic research. (shrink)

According to a libidinally charged slogan, Social Networking Services are meant to give "people the power to share and make the world more open and connected." But does the digital act of sharing personal information – invested in so many of the New Social Media – make such internet domains a public realm? What characterizes actually the public according to classical political theory, and what sort of performances become visible in digital fora under the banners of interactivity, friendship and (...) an alleged dissolution of boundaries? Against the background of increasingly elastic borders between things considered private and spaces declared public as well as of a remarkable spectrum of modes of sharing – ranging from disclosing daily trivia to collectively expressing political dissent – our contribution will examine the ambivalence of sharing in Social Net-working Services, not least in Facebook, in terms of a paradoxical nexus of passions and risks. (shrink)

In order to facilitate cooperation to solve problems within a nation-state, a new approach which conceptualizes citizenship in terms of shared fate has been promoted to potentially ameliorate the tensions identified between civic liberty and solidarity. Proponents of an emphasis on shared fate frame it not in terms of a particular shared national identity, but in terms of participation in the shared project of the nation-state. The approach of singular shared fate rightly emphasizes the urgency of finding a common ground (...) for people to cultivate obligations to others and achieve sincere cooperation in a society. Unfortunately, in some cases it leaves room for some people to undermine the common ground and its good intention, however, as the promotion of a view of singular shared fate risks producing a hegemonic singular nation building project and predesigning an agreement before a truly inclusive and just dialogue among relevant stakeholders proceeds. To make the good intentions of the notion of shared fate realizable, a modification is explored, in recasting the concept of singular “shared fate” to plural “shared fates”. Given the situation that people in societies have the plural shared fates de facto, the view of plural shared fates recognizes that people will reject any singular substantial nation building project that has a predesigned direction. In current, divided societies, acknowledging multiple fates at the beginning, rather than predesigning a singular fate, can better provide a platform for all stakeholders to discuss their obligations to others toward sincere cooperation through equal co-construction of what is shared and what is not shared. To enhance civic education in a multicultural society, we suggest that complementing the concept of singular “shared fate” with a recognition of the value of plural “shared fates” can provide a context for all people to work together towards a more inclusive and just future. (shrink)

Schütz’ tuning-in relationship designates sharing time as the ground of we-experiences, but the Husserlian account of time that he relies upon for this argument seems to undermine the very possibility of doing so. I argue that Merleau-Ponty’s conception of temporality offers a more plausible account of shared time via the ‘transferability’ of the body schema. Disability theorists and critical phenomenologists, however, would remind us that any account of we-experiences must recognize bodily difference. I argue that bodies of diverse motilities (...) can come to share a body schema without risk of ‘forced time compliance’ if we jettison synchronization and embrace improvisation as a paradigm for schematic sharing: I use the example of collective free improvisation to illustrate flexible, emergent, and bidirectional body schemas that, I claim, circumvent the assimilationist tendencies looming in any account of we-experiences premised upon bodily sameness. (shrink)

Several psychosocial models have been proposed to explain the etiology of eating disorders and obesity separately despite research suggesting they should be conceptualized within a shared theoretical framework. The objective of the current study was to test an integrated comprehensive model consisting of a host of common risk and protective factors expected to explain both eating and weight disorders simultaneously in a large school-based sample of adolescents. Data were collected from 3,043 youth from 41 schools in the Ottawa region, (...) Canada. Working with interested school staff, validated self-report scales in the form of a questionnaire booklet were administered to participating students to assess several understood risk and protective factors common to both eating disorders and obesity. Anthropometric measurements of weight and height were taken at the end of the questionnaire administration period by trained research staff. Structural equation modeling with cross-validation was used to test the hypothesized model. Findings demonstrated that dysregulated eating was associated with both eating disorder and weight status with diet culture and emotion dysregulation directly associated with some of these disordered eating patterns. It equally pointed to how lifestyle made up of high sedentary behaviors, low vigorous exercise and varied eating patterns contributed to both emotion dysregulation and poor body image which subsequently affected eating issues and weight status simultaneously, signaling the complex interplay of psychosocial factors that underlie these concerns. This study provides evidence for an integrated psychosocial model consisting of socio-environmental, psychological, and behavioral factors may best explain the complex interplay of risk and protective factors influencing eating disorders and obesity. It equally highlights understanding the direct and indirect effects of some of the most salient risk factors involved in eating and weight-related concerns, including the strong effects of diet culture and stressors such as weight-based teasing, providing interventionalists evidence of important risk factors to consider targeting in eating disorder and weight-based prevention efforts. (shrink)

In vitro fertilization is now a well-established practice in the field of assisted reproduction. In 1995, over 41,000 IVF cycles were done in the United States, at a cost of more than $300 million. The overall success rate has risen to 22.8 deliveries per 100 egg-retrieval procedures. As the field has matured, the attention of policy-makers has shifted from questions about the ethical and legal status of human embryos to concerns about providing access and protecting consumers.Three such concerns have emerged. (...) One is the danger that IVF programs will disseminate misleading information about their success rates in order to attract patients. This problem, however, may be alleviated by the publication in late 1997 of the first of annual national and clinic specific reports, based on randomly audited data, by the Centers for Disease Control and Prevention, the American Society of Reproductive Medicine, the Society for Assisted Reproductive Technology, and RESOLVE, pursuant to the federal 1992 Fertility Clinic Success Rate and Laboratory Certification Act. (shrink)

This article focuses on some «disaster ethics» considerations on disaster preparedness and its related responsibilities. After recalling that concerns about preparedness and vulnerability have come to the fore in the domains of «disaster risk reduction» over the last decades, the article will endorse the view that the demarcation between natural disasters and human-induced disasters has becoming blurred and even questionable in many cases. Then, it will be argued that the ethical assessment of disasters needs to consider the entire disaster (...) cycle and that ethical duties extend to the phase of disaster preparedness and require a framework of prospective and shared responsibilities. Accordingly, a number of ethical duties concerning disaster preparedness will be commented upon. Finally, the article will discuss a specific socio-epistemic dynamics of blame assignment that unbalances the appraisal of both vulnerability conditions and moral responsibilities of certain worst-off disaster victims. (shrink)

Patients in around 20 countries worldwide are now offered online access to at least some of their medical records. Access includes test results, medication lists, referral information, and/or the very words written by clinicians (so-called ‘open notes’). In this paper, I discuss the possibility of one unintended negative consequence of patient access to their clinical notes—the potential to increase ‘nocebo effects’. A growing body of research shows that nocebo effects arise by engaging perceptual and cognitive processes that influence negative expectancies, (...) and as a consequence, adverse health effects. Studies show that increased awareness about the side effects of medications, the framing of information and the socioemotional context of care can increase the risk of nocebo effects. Connecting research into the nocebo effect with open notes provides preliminary support for the hypothesis that patient access to clinical notes might be a forum for facilitating unwanted nocebo effects. Furthermore, current findings indicate that we might expect to see systematic differences in how nocebo effects are experienced among different patient populations. The ethical implications of the tension between transparency and the potential for harm are discussed, with an emphasis on what open notes might mean for justice and equity in clinical care for a range of already marginalised patient populations. I argue that to resolve these challenges does not thereby justify ‘closed notes’, and conclude with suggestions for how health systems and clinicians might adapt to this innovation to reduce the risk of potential nocebo effects arising via this novel route. (shrink)

Purpose Human genomic research demands very large pools of data to generate meaningful inference. Yet, the sharing of one’s genetic data for research is a voluntary act. The collection of data sufficient to fuel rapid advancement is contingent on individuals’ willingness to share. Privacy risks associated with sharing this unique and intensely personal data are significant. Genetic data are an unambiguous identifier. Public linkage of donor to their genetic data could reveal predisposition to diseases, behaviors, paternity, heredity, intelligence, (...) etc. The purpose of this paper is to understand individuals’ willingness to volunteer their private information in this high-risk/high-reward context. Design/methodology/approach The authors collect survey data from 273 respondents and use structural equation modeling techniques to analyze responses. Findings The authors find statistical support for our theorization. They find that while heightened awareness of the benefits and risks of sharing correlates with increased privacy concerns, the net impact is an increase in intention to share. Social implications The findings suggest that prescriptive awareness might be an effective tool with which policy-makers can gain the sufficient voluntary participation from individuals necessary to drive large-scale medical research. Originality/value This study contributes a theoretically and empirically informed model which demonstrates the impact of awareness and privacy concern on individuals’ willingness to share their genetic data for large-scale HGR. It helps inform a rising class of data sufficiency problems related to large-scale medical research. (shrink)

Combatants who attempt to obey the laws of war often have to take considerable risks in order to effectively discriminate between legitimate and illegitimate targets. Sometimes this task is made even more complicated by systemic factors which influence their ability to discriminate effectively without unduly risking their lives or the mission. If they fail to do so, civilians often pay the price. In this paper, I argue that to the extent that non-combatants benefit from the attempt to fight justly, and (...) to the extent that wars in which combatants attempt to fight justly can be understood as a system of social cooperation which produces both burdens and benefits, non-combatants have a responsibility to shoulder their fair share of these burdens. Thus, if combatants (and by extension enemy non-combatants) are disproportionately burdened in a conflict, non-combatants ought to take on some costs, for instance in order to reduce the strain imposed on combatants by systemic factors such as the availability and distribution of resources. (shrink)

The COVID-19 pandemic has helped to clarify the fair and equitable allocation of scarce medical resources, both within and among countries. The ethical allocation of such resources entails a three-step process: (1) elucidating the fundamental ethical values for allocation, (2) using these values to delineate priority tiers for scarce resources, and (3) implementing the prioritisation to faithfully realise the fundamental values. Myriad reports and assessments have elucidated five core substantive values for ethical allocation: maximising benefits and minimising harms, mitigating unfair (...) disadvantage, equal moral concern, reciprocity, and instrumental value. These values are universal. None of the values are sufficient alone, and their relative weight and application will vary by context. In addition, there are procedural principles such as transparency, engagement, and evidence-responsiveness. Prioritising instrumental value and minimising harms during the COVID-19 pandemic led to widespread agreement on priority tiers to include health-care workers, first responders, people living in congregate housing, and people with an increased risk of death, such as older adults and individuals with medical conditions. However, the pandemic also revealed problems with the implementation of these values and priority tiers, such as allocation on the basis of population rather than COVID-19 burden, and passive allocation that exacerbated disparities by requiring recipients to spend time booking and travelling to appointments. This ethical framework should be the starting point for the allocation of scarce medical resources in future pandemics and other public health conditions. For instance, allocation of the new malaria vaccine among sub-Saharan African countries should be based not on reciprocity to countries that participated in research, but on maximally reducing serious illness and deaths, especially among infants and children. (shrink)

Sperm sharing arrangements involve a man (‘the sharer’) allowing his sperm to be used by people seeking donor sperm (‘the recipients’) in exchange for reduced price in vitro fertilisation. Clinics in the UK have offered egg sharing since the 1990s and the arrangement has been subjected to regulatory oversight and significant ethical analysis. By contrast, until now no published ethical or empirical research has analysed sperm sharing. Moreover the Human Fertilisation and Embryology Authority (HFEA) does not record (...) the number of sperm sharing arrangements taking place.This paper describes the sperm sharing process providing an analysis of all the UK clinics advertising sperm sharing services. The ethical rationale for egg sharing is described: reducing the number of women exposed to the risks of stimulation and retrieval. This advantage is absent in sperm sharing where donation has no physical drawbacks. The key adverse social and emotional outcome of gamete sharing arises when the sharer’s own treatment is unsuccessful and the recipient’s is successful. This outcome is more likely in sperm sharing than in egg sharing given sperm from sharers can be used by up to 10 families whereas shared eggs only go to one other family.Given its morally relevant differences from egg sharing, sperm sharing requires its own ethical analysis. The HFEA should begin recording sperm sharing arrangements in order to enable meaningful ethical and policy scrutiny. (shrink)

An evolutionarily informed perspective on parent-infant sleep contact challenges recommendations regarding appropriate parent-infant sleep practices based on large epidemiological studies. In this study regularly bed-sharing parents and infants participated in an in-home video study of bed-sharing behavior. Ten formula-feeding and ten breast-feeding families were filmed for 3 nights for 8 hours per night. For breast-fed infants, mother-infant orientation, sleep position, frequency of feeding, arousal, and synchronous arousal were all consistent with previous sleep-lab studies of mother-infant bed-sharing behavior, (...) but significant differences were found between formula and breast-fed infants. While breast-feeding mothers shared a bed with their infants in a characteristic manner that provided several safety benefits, formula-feeding mothers shared a bed in a more variable manner with consequences for infant safety. Paternal bed-sharing behavior introduced further variability. Epidemiological case-control studies examining bed-sharing risks and benefits do not normally control for behavioral variables that an evolutionary viewpoint would deem crucial. This study demonstrates how parental behavior affects the bed-sharing experience and indicates that cases and controls in epidemiological studies should be matched for behavioral, as well as sociodemographic, variables. (shrink)

Platforms for sharing genomic and phenotype data have been developed to promote genomic research, while maximizing the utility of existing datasets and minimizing the burden on participants. The value of genomic analysis of trios or family members has increased, especially in rare diseases and cancers. This article aims to argue the necessity of protection when sharing data from both patients and family members. Sharing patients’ and family members’ data collectively raises an ethical tension between the value of (...) datasets and the rights of participants, and increases the risk of re-identification. However, current data-sharing policies have no specific safeguards or provisions for familial data sharing. A quantitative survey conducted on 10,881 general adults in Japan indicated that they expected stronger protection mechanisms when their family members’ clinical and/or genomic data were shared together, as compared to when only their data were shared. A framework that respects decision-making and the right of withdrawal of participants, including family members, along with ensuring usefulness and security of data is needed. To enable this, we propose recommendations on ancillary safeguards for familial data sharing according to the stakeholders, namely, initial researchers, genomic researchers, data submitters, database operators, institutional review boards, and the public and participants. Families have played significant roles in genetic research, and its value is re-illuminated in the era of genomic medicine. It is important to make progress in data sharing while simultaneously protecting the privacy and interests of patients and families, and return its benefits to them. (shrink)

The successes of the Human Genome Project have ushered in a new era of genomic science. To effectively translate these discoveries, it will be critical to improve the communication of genetic risk within families. This will require a systematic approach that accounts for the nature of family relationships and sociocultural beliefs. This paper proposes the application of the Family Systems Illness Model, used in the setting of cancer care, to the evolving field of genomics.

Over the past few years, a significant global debate has developed over the classification of workers in the sharing economy either as independent contractors or as employees. While Uber and Lyft have dominated the spotlight lately, the worker classification debates extend beyond ridesharing companies and affect workers across a variety of sectors. Classification of a worker as an employee, rather than an independent contractor, can carry a range of implications for worker treatment and protections under labor law, anti-discrimination law, (...) tort law, and tax law, depending on the legal jurisdiction. The debates, at least in the United States, have been incomplete due to the failure of policy makers and advocates to consider the scope and interconnectedness of the worker classification issues across the full sweep of legal arenas. There is time, however, to remedy the incompleteness of these policy conversations before worker classification decisions ossify and path dependence takes hold. Two interacting forces create the most serious risk for inadequate policy formulation: (1) silos among legal experts, and (2) first-mover effects. Both of these factors, silo and first mover, emerge in sharing economy debates in the United States. Tax experts and other legal specialists operate in distinct silos leading to a misunderstanding by non-tax analysts of the tax ramifications of worker classification, and to an under appreciation on the part of tax experts of the potential influence of “modest” tax rule changes on worker classification generally. The risks of such misunderstandings can be amplified by first-mover efforts, such as: (1) platforms’ contractual designation of workers as independent contractors to bolster a claim of nonemployer/nonemployee status; (2) platforms’ support for proposed tax legislation that would “clarify” the status of sharing workers as independent contractors for tax purposes if they satisfy a multiple-prong (relatively easy) safe harbor test; and (3) sharing economy worker litigation to secure employee status. This Article identifies the incompleteness in the worker classification debates and argues for the active formulation of policy through a process that looks beyond individual fields. A more complete conversation requires analytical engagement across multiple fields and recognition of the de facto power of reform in one arena to influence others. Moreover, it is by no means clear that just because tax might arrive at the legislative drawing table first (due to first mover effects), that it should drive or shape the broader worker classification debate. (shrink)

Roboethics is a recently developed field of applied ethics which deals with the ethical aspects of technologies such as robots, ambient intelligence, direct neural interfaces and invasive nano-devices and intelligent soft bots. In this article we look specifically at the issue of (moral) responsibility in artificial intelligent systems. We argue for a pragmatic approach, where responsibility is seen as a social regulatory mechanism. We claim that having a system which takes care of certain tasks intelligently, learning from experience and making (...) autonomous decisions gives us reasons to talk about a system (an artifact) as being “responsible” for a task. No doubt, technology is morally significant for humans, so the “responsibility for a task” with moral consequences could be seen as moral responsibility. Intelligent systems can be seen as parts of socio-technological systems with distributed responsibilities, where responsible (moral) agency is a matter of degree. Knowing that all possible abnormal conditions of a system operation can never be predicted, and no system can ever be tested for all possible situations of its use, the responsibility of a producer is to assure proper functioning of a system under reasonably foreseeable circumstances. Additional safety measures must however be in place in order to mitigate the consequences of an accident. The socio-technological system aimed at assuring a beneficial deployment of intelligent systems has several functional responsibility feedback loops which must function properly: the awareness and procedures for handling of risks and responsibilities on the side of designers, producers, implementers and maintenance personnel as well as the understanding of society at large of the values and dangers of intelligent technology. The basic precondition for developing of this socio-technological control system is education of engineers in ethics and keeping alive the democratic debate on the preferences about future society. (shrink)

IntroductionInternational sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research.MethodsWe performed a narrative review of the empirical (...) evidence addressing patients’ and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed, Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients’ and public attitudes were extracted from selected references and thematically categorised.ResultsTwenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread—though conditional—support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability.ConclusionsOur results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests. (shrink)

Bike sharing, as an innovative travel mode featured by mobile internet and sharing, offers a new transport mode for short trips and has a huge positive impact on urban transportation and environmental protection. However, bike-sharing operators face some operational challenges, especially in sustainable development and profitability. Studies show that the customers’ willingness to pay is a key factor affecting bike-sharing companies’ operating conditions. Based on the theories of perceived value, this study conducts an empirical analysis of (...) factors that affect bike-sharing users’ willingness to pay for bike-sharing through measurement scales, user surveys, and structural equation models. We designed a five-point Likert-type scale containing 11 latent variables affecting willingness to pay and a total of 34 measurement items. We investigate bike-sharing users in China’s first and second-tier cities, with a total of 502 participants. The results show that perceived value, payment awareness, trust, and environmental awareness constitute key factors that directly affect bike-sharing users’ willingness to pay. And perceived usefulness, perceived ease-of-use, perceived cost, and perceived risk indirectly affect bike-sharing users’ willingness to pay. However, we found no significant effects of perceived entertainment on perceived value or word of mouth on willingness to pay. Our results are expected to provide theoretical and practical implications for bike-sharing programs. (shrink)

Large-scale linkage of international clinical datasets could lead to unique insights into disease aetiology and facilitate treatment evaluation and drug development. Hereto, multi-stakeholder consortia are currently designing several disease-specific translational research platforms to enable international health data sharing. Despite the recent adoption of the EU General Data Protection Regulation, the procedures for how to govern responsible data sharing in such projects are not at all spelled out yet. In search of a first, basic outline of an ethical governance (...) framework, we set out to explore relevant ethical principles and norms. We performed a systematic review of literature and ethical guidelines for principles and norms pertaining to data sharing for international health research. We observed an abundance of principles and norms with considerable convergence at the aggregate level of four overarching themes: societal benefits and value; distribution of risks, benefits and burdens; respect for individuals and groups; and public trust and engagement. However, at the level of principles and norms we identified substantial variation in the phrasing and level of detail, the number and content of norms considered necessary to protect a principle, and the contextual approaches in which principles and norms are used. While providing some helpful leads for further work on a coherent governance framework for data sharing, the current collection of principles and norms prompts important questions about how to streamline terminology regarding de-identification and how to harmonise the identified principles and norms into a coherent governance framework that promotes data sharing while securing public trust. (shrink)

BackgroundIn this article, we address questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted by the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public regarding predictive oncology, genetic sequencing, and cancer. MethodsThis paper presents the results of a citizen forum that included 73 participants. A research tool titled "the (...) mechanics of consent" was designed for this study. This tool is a table encouraging participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants’ discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis.ResultsThe results are a compilation of responses from the mechanics of consent tool divided into two sections; the first presents quantitative results of collective responses regarding attitudes to consent to donate their data. The second section present qualitative findings emerged from the discussion amongst participants.DiscussionChoice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits; who will be accessing and using their data; as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, by acting in a competent, reliable, and honest manner. Governance systems ought to be better equipped to address ethical issues raise by the growing presence of non-traditional research actors, consent of exchanges of data via digital devices and online activity such as social media and fairness of data trading. Finally, informed consent is one of the various elements that contribute to conducting ethical research. More needs to be done to strengthen governance and ensure adequate protection of research participants, particularly to address issues related to predictive health analytics. (shrink)

Islamic financing instruments can be categorised into profit and loss/risk sharing and non-participatory instruments. Although profit and loss sharing instruments such as musharakah are widely accepted as the ideal form of Islamic financing, prior studies suggest that alternative instruments such as murabahah are preferred by Islamic banks. Nevertheless, prior studies did not explore factors that influence the use of Islamic financing among non-financial firms. Our study fills this gap and contributes new knowledge in several ways. First, we (...) find no evidence of widespread use of Islamic financing instruments across non-financial firms. This is because the instruments are mostly used by less profitable firms with higher leverage. Second, we find that profit and loss sharing instruments are hardly used, whilst the use of murabahah is dominant. Consistent with the prediction of moral-hazard-risk avoidance theory, further analysis suggests that users with a lower asset base are associated with murabahah financing. Third, we present a critical discourse on the contentious nature of murabahah as practised. The economic significance and ethical issues associated with murabahah as practised should trigger serious efforts to steer Islamic corporate financing towards risk-sharing more than the controversial rent-seeking practice. (shrink)

The diversity of state confidentiality laws governing public health data presents a significant challenge for public health initiatives. This challenge is further complicated by the array of confidentially laws that are relevant within a state as disclosure and usage standards vary depending upon data holder, type, and source. These laws often have not been updated to address modern confidentiality risks such as unlawful data linkage or breach, leaving many public health organizations without clear guidance in the contentious area of individual (...) privacy. To address these challenges, public health organizations have increasingly turned to the science of de-identification, but whether de-identification adequately meets the many and varied state confidentiality legal requirements remains an unanswered question. (shrink)

BackgroundFor over 35 years, Africa has continued to host HIV vaccine trials geared towards overturning the HIV/aids pandemic in the continent. However, the methods of sharing the vaccines, when available remain less certain. Therefore, the study aims to explore stakeholders’ perspectives in the global South, in this case, Tanzania, on how HIV vaccines ought to be fairly shared.MethodsThe study deployed a qualitative case study design. Data were collected through in-depth interviews and focus group discussions with a total of 37 (...) purposively selected participants. This included researchers, institutional review board members, a policymaker, HIV/aids advocates, and community advisory board members. The data obtained were inductively and deductively analyzed.Results Findings indicate that HIV vaccines can be shared fairly under the principles of distributive justice (contribution, need and equality). Thus, contribution-based sharing ought to be utilized upon the necessity to prioritize vaccine access or subsidized trial benefits to host communities. Need-based sharing ought to be considered for non-host communities that are at an increased risk of HIV infection. Lastly, equal-based sharing would be useful at later stages of vaccine distribution or when the aforementioned principles are deemed morally inappropriate. However, none of the benefit-sharing approaches is free of limitations and a counterbalancing sense of unfairness.ConclusionFair sharing of HIV vaccines, when available, ought to be informed by the contribution, need and equality principles of distributive justice. Countries in the global south including Tanzania are likely to be prioritized during the distribution of the HIV vaccines due to their participation in HIV vaccine trials and due to the disproportionate HIV burden evident in the region. (shrink)

Shared decision making has become the standard of care, yet there remains no consensus about how it should be conducted. Most accounts are concerned with threats to patient autonomy, and they address the dangers of a power imbalance by foregrounding the patient as a person whose complex preferences it is the practitioner's task to support. Other corrective models fear that this level of mutuality risks abdicating the practitioner's responsibilities as an expert, and they address that concern by recovering a nuanced (...) but genuinely directive clinical role. Cribb and Entwistle helpfully categorize models of shared decision making as ‘narrower’ and ‘broader’ and praise the latter's ‘open‐ended and fully dialogical ways of relating’. However, they stop short of providing a philosophical account of how that dialogue works. In this paper, a nurse–midwife and a philosopher collaborate to argue that the Socratic model of dialogue offers a solution to the practitioner–patient dilemma. In the Theaetetus, Socrates compares dialogical reasoning to ‘midwifery with all its standard features’. By means of a three‐way analogy, elements of midwifery practice are used to illuminate features of Socrates' claim that his dialogue is like midwifery; those features are then translated into an approach to shared decision making as the ‘midwifery of good thinking’ which both midwives and physicians would do well to adopt. A key concept that emerges is the need for practitioners to make a risk‐confidence assessment of the particular content of any decision to appropriately modulate their role in the practice of shared decision making. (shrink)

As Big Data, the Internet of Things and insurance collide, so too, do the best and the worst of our futures. Insurance is summoned as an example of the interference in our private lives that is already underway everywhere. In this paper, we pause to reflect on this argument. Can changes in the way insurance measures the value of behaviour really serve as an example of the individual and social harms of datafication? How do we know? Insurance is a mathematical (...) relationship staged between individuals and groups, between risk and uncertainty, between distribution and assessment, between the value of sharing and the sharing of value. We use the case study of Discovery International, owner of Vitality, the market leading brand in behavioural insurance to consider how behaviour is being branded and how the brand behaves. (shrink)

Medical paternalism has long been a common medical practice. However, patient autonomy in healthcare has been recently adopted by doctors and patients alike. This study explored whether doctors and patients in a tertiary care hospital in Saudi Arabia preferred autonomy or paternalism in shared decision‐making. A total of 118 participants (51 patients requiring total knee replacement, owing to stages 3–4 of osteoarthritis, and 67 doctors) from the Eastern province, Saudi Arabia. responded to a 17‐question category‐based questionnaire involving four scales of (...) autonomy. Descriptive statistics and chi‐square test results revealed that in this hospital, patients preferred a paternalistic approach toward their medical care along with a full disclosure of the risks related to surgical procedures. We recommend health education regarding the specific autonomy subscales (doctor knows best, patient should decide, right to non‐participation, and obligatory risk information), and the implementation of protocols that protect patients' rights and enhance personal autonomy. (shrink)

Bypassing occurs on sharing platforms when users decide to finalize the exchange directly with each other and engage in tactics to circumvent the payment stage. While previous studies have focused on the antecedents associated with bypass practices, more research is needed to better understand the prevalence of bypassing, which bypass practices are enacted, which types of users bypass, and which do not. Using a mixed-methods design, we first conduct semi-structured interviews (_N_ = 19) to identify several motivations behind bypass (...) tactics that complement the existing literature. We also establish four different bypassing behaviors: (1) paying the other peer directly, (2) transacting via another platform, (3) a combination of on- and off-platform booking, and (4) repeat transactions. Next, by carrying out cluster analysis on a sample of Airbnb users (_N_ = 416), we uncover three groups of bypassers: serial maximizers, rookies, and safe players. Further analysis of Airbnb users who have never bypassed shows that they can be categorized into three additional segments: risk-conscious users, hassle-avoiders, and borderline bypassers. Each of these six groups corresponds to a specific profile, which we describe and characterize based on motivational, relational, and psychographic factors. This research provides an actionable segmentation framework that will help sharing platform managers develop tailored bypass mitigation strategies. (shrink)