Whole-genome analysis and whole-exome analysis generate many more clinically actionable findings than traditional targeted genetic analysis. These findings may be relevant to research participants themselves as well as for members of their families. Though researchers performing genomic analyses are likely to find medically significant genetic variations for nearly every research participant, what they will find for any given participant is unpredictable. The ubiquity and diversity of these findings complicate questions about disclosing individual genetic test results. We outline an approach for (...) disclosing a select range of genetic results to the relatives of research participants who have died, developed in response to relatives? requests during a pilot study of large-scale medical genetic sequencing. We also argue that studies that disclose individual research results to participants should, at a minimum, passively disclose individual results to deceased participants? relatives. (shrink)

In The Ethics of Food, Gregory E. Pence brings together a collection of voices who share the view that the ethics of genetically modified food is among the most pressing societal questions of our time. This comprehensive collection addresses a broad range of subjects, including the meaning of food, moral analyses of vegetarianism and starvation, the safety and environmental risks of genetically modified food, issues of global food politics and the food industry, and the relationships among food, evolution, and human (...) history. (shrink)

BackgroundLittle is known about volunteers from Northern research settings who participate in vaccine trials of highly infectious diseases with no approved treatments. This article explores the motivations of HIV immunocompromised study participants in Canada who volunteered in a Phase II clinical trial that evaluated the safety and immunogenicity of an Ebola vaccine candidate.MethodsObservation at the clinical study site and semi-structured interviews employing situational and discursive analysis were conducted with clinical trial participants and staff over one year. Interviews were recorded, transcribed (...) and analysed using critical qualitative interpretivist thematic analytical techniques. Patterns were identified, clustered and sorted to generate distinct and comprehensive themes. We then reassembled events and contexts from the study participants’ stories to develop two ideal portraits based on "composite characters" based on study participants features. These provide ethnographically rich details of participants’ meaningful social worlds while protecting individual identities.ResultsTen of the 14 clinical trial participants, and 3 study staff were interviewed. Participant demographics and socio-economic profiles expressed limited contextual diversity. Half were men who have sex with men, half were former injection drug users experiencing homelessness, one was female, none were racialized minorities and there were no people from HIV endemic countries. Fully 90% had previous involvement in other clinical studies. Their stories point to particular socio-economic situations that motivated their participation as clinical labor through trial participation.ConclusionsOur findings support Fisher’s argument of “structural coercion” in clinical trial recruitment of vulnerable individuals experiencing precarious living conditions. Clinical trials should provide more detail of the structural socio-economic conditions and healthcare needs which lie “under consent” of study participants. Going well beyond an overly convenient narrative of altruism, ethical deliberation frameworks need to sufficiently address the structural conditions of clinical trials. We offer concrete possibilities for this and acknowledge that further research and clinical data should be made available underlying study participant contexts with regards to recruitment and participation in resource poor settings, in both the South and the North. (shrink)

Quantum mechanics and probability theory share one peculiarity. Both have well established mathematical formalisms, yet both are subject to controversy about the meaning and interpretation of their basic concepts. Since probability plays a fundamental role in QM, the conceptual problems of one theory can affect the other. We first classify the interpretations of probability into three major classes: inferential probability, ensemble probability, and propensity. Class is the basis of inductive logic; deals with the frequencies of events in repeatable experiments; describes (...) a form of causality that is weaker than determinism. An important, but neglected, paper by P. Humphreys demonstrated that propensity must differ mathematically, as well as conceptually, from probability, but he did not develop a theory of propensity. Such a theory is developed in this paper. Propensity theory shares many, but not all, of the axioms of probability theory. As a consequence, propensity supports the Law of Large Numbers from probability theory, but does not support Bayes theorem. Although there are particular problems within QM to which any of the classes of probability may be applied, it is argued that the intrinsic quantum probabilities are most naturally interpreted as quantum propensities. This does not alter the familiar statistical interpretation of QM. But the interpretation of quantum states as representing knowledge is untenable. Examples show that a density matrix fails to represent knowledge. (shrink)

Scholars have shown renewed interest in the construct of courage. Recent studies have explored its theoretical underpinnings and measurement. Yet courage is generally discussed in its broad form to include physical, psychological, and moral features. To understand a more practical form of moral courage, research is needed to uncover how ethical challenges are effectively managed in organizational settings. We argue that professional moral courage (PMC) is a managerial competency. To describe it and derive items for scale development, we studied managers (...) in the U.S. military and examined prior work on moral courage. Two methods were used to measure PMC producing a five dimensional scale that organized under a single second-order factor, which we termed overall PMC. The five dimensions are moral agency, multiple values, endurance of threats, going beyond compliance, and moral goals. Convergent and discriminant validity are analyzed by use of confirmatory factor analysis procedures. We conclude by presenting a framework for proactive organizational ethics, which reflects how to support PMC as a management practice. (shrink)

In “Meeting the Moment: Bioethics in the Time of Black Lives Matter,” Camisha Russell calls for transforming “bioethics-as-usual” with help from “outsiders”. Prior scholars agree...

The ideal goal of a screening program for breast cancer is to detect the disease at a stage when it is still curable by a simple lumpectomy. This goal would be possible if the tumor had an early latent period before it was vascularized. However, even if there existed a harmless screening examination that was sensitive enough to discover the cancer at this stage the benefit to be gained from a screening program would be highly dependent on the time the (...) tumor spends in the latent stage as well as on the chance of false negatives at the examination. Calculations derived from a mathematical model suggest a variety of theoretically possible situations including: (1) For certain cancers screening every three years would offer almost as much benefit as screening every year; (2) A large increase in the sensitivity of a screening examination does not necessarily lead to a large increase in the benefit of a screening program; (3) For certain cancers the benefit of screening might remain low no matter how sensitive the examination used. (shrink)

Answering important public health questions often requires collection of sensitive information about individuals. For example, our understanding of how HIV is transmitted and how to prevent it only came about with people's willingness to share information about their sexual and drug-using behaviors. Given the scientific need for sensitive, personal information, researchers have a corresponding ethical and legal obligation to maintain the confidentiality of data they collect and typically promise in consent forms to restrict access to it and not to publish (...) identifying data.The interests of others, however, can threaten researchers' promises of confidentiality when legal demands are made to access research data. In some cases, the subject of the litigation is tightly connected to the research questions, and litigants' interest in the data is not surprising. Researchers conducting studies on tobacco or occupational or other chemical exposures, for example, are relatively frequent targets of subpoenas. (shrink)

Researchers now commonly collect biospecimens for genomic analysis together with information from mobile devices and electronic health records. This rich combination of data creates new opportunities for understanding and addressing important health issues, but also intensifies challenges to privacy and confidentiality. Here, we elucidate the “web” of legal protections for precision medicine research by integrating findings from qualitative interviews with structured legal research and applying them to realistic research scenarios involving various privacy threats.

Administraation of antiretroviral therapy to women during pregnancy, labor and delivery, and to infants postnatally can dramatidy reduce mother-to- child HIV transmission. However, pregnant women need to know that they are HIV-infected to take advantage of antiretroviral therapy, and many women do not know their HIV status. One-half of HIV-infected infants in the United States were bornto women who had not been tested for HIV or for whom the time of testing was not known. Although fewer than 400infants are infected (...) perinatally in the United States each year, that number could be reduced even further through policies aimed at HIV testing during pregnancy.The reasons toadopt such a policy are strong: the pathophysiology of perinatal transmission is clear, prophylaxis is effective and safe, and the intended beneficiaries of the intervention - babies - cannot protect themselves. (shrink)

Administraation of antiretroviral therapy to women during pregnancy, labor and delivery, and to infants postnatally can dramatidy reduce mother-to- child HIV transmission. However, pregnant women need to know that they are HIV-infected to take advantage of antiretroviral therapy, and many women do not know their HIV status. One-half of HIV-infected infants in the United States were bornto women who had not been tested for HIV or for whom the time of testing was not known. Although fewer than 400infants are infected (...) perinatally in the United States each year, that number could be reduced even further through policies aimed at HIV testing during pregnancy.The reasons toadopt such a policy are strong: the pathophysiology of perinatal transmission is clear, prophylaxis is effective and safe, and the intended beneficiaries of the intervention - babies - cannot protect themselves. (shrink)

Drawing on a conception of scientists and community members as partners in the construction of ethically responsible research practices, this article urges investigators to seek the perspectives of teenagers and parents in evaluating the personal and political costs and benefits of research on adolescent risk behaviors. Content analysis of focus group discussions involving over 100 parents and teenagers from diverse ethnic and socioeconomic backgrounds revealed community opinions regarding the scientific merit, social value, racial bias, and participant and group harms and (...) benefits associated with surveys, informant reports, intervention studies, blood sampling, and genetic research on youth problems. Participant comments highlight new directions for socially responsible research. (shrink)

During the AIDS epidemic in the 1980s, it was crucial that providers take steps to protect patients by managing HIV with the perspective of ‘HIV exceptionalism’. However, in 2020, the social and historical barriers erected by this concept, as demonstrated in this patient’s case, are considerably impeding progress to end the epidemic. With significant medical advances in HIV treatment and prevention, the policies informed by HIV exceptionalism now paradoxically perpetuate stigma and inequities, particularly for people of colour. To improve overall (...) HIV care, the medical community must move past HIV exceptionalism by liberalising diagnostics, instituting clinician implicit bias training and advocating to fully decriminalise HIV non-disclosure. (shrink)

This study examined how research conducted at several federally funded institutions designated as Clinical Research Centers or Specialized Programs of Research Excellence addressed the issues of consent, control over biological materials, confidentiality, and disclosure of results in protocols and consent forms for genetic research with stored biological materials. Although a majority of the documents reviewed addressed most of the issues raised in the research ethics literature, topics identified in the literature that were missing include the return of research results, the (...) right to withdraw from research involving biological materials, and the consent of children when they become legal adults. If typical, these findings suggest greater educational efforts may be needed to prompt investigators and IRBs to consider these and other issues that were either not addressed in the protocols or consent forms or were addressed inadequately. (shrink)

Leader-managers face a myriad of competing values when they engage in ethical decision-making. Few studies help us understand why certain reasons for action are justified, taking precedence over others when people choose to respond to an ethical dilemma. To help address this matter we began with a qualitative approach to disclose leader-managers' moral motives when they decide to address a work-related ethical dilemma. One hundred and nine military officers were asked to provide their reasons for taking action, justifications of their (...) reasons, and to explain these justifications. We used network analysis techniques to identify a hierarchical motive structure. The motive structure is a cognitive map that identifies ethical motives and perceptions of how these ethical motives relate to each other. The motives identified represent classic conceptualizations of moral behavior; namely, virtue theories, consequentialism, and deontological theories, along with another category that expressed the emotional significance of the moral judgment, which we refer to as emotional empiricism. (shrink)

This chapter contains sections titled: What is Sexism? Background: Language, Experience, and Recognition Levels of Sexism Two Feminist Views of Sexism Objections.

Can a country with a free press and a robust political debate provide its citizens with actionable information so that they can protect themselves from a threat to their health or safety? By actionable information, I mean accurate facts and reasonable interpretations of those facts upon which an individual should rely in making reason-based decisions. In the context of public health, this includes information that allows an individual to weigh the risk to one’s self, family, and community before deciding to (...) act in an uncertain environment under threatening conditions. The recent H1N1 pandemic, and in particular the government’s campaign for public acceptance of the vaccine, highlights the challenges in ensuring that individuals receive accurate information and perceive that such information should be the basis on which to make potential life-saving decisions. (shrink)

A volume in Ethics in Practice Series Editors Robert A. Giacalone, Temple University and Carole L. Jurkiewicz, Louisiana State University Making sure that performance in business enterprise is achieved ethically is no small task. Leaders, managers, and employees at every level of the organization need to utilize systems and processes that support ethical strength, establishing a workplace where responsibility, accountability, and doing the right thing are genuinely valued and practiced. Management can help support ethical performance in workers' daily task actions (...) by underscoring the importance of rules and regulations, while also moving to ensure that employees understand and care about doing what's right. Given that most firms only emphasize compliance in ethics training, there is vast room for additional development. Training people to be less bad is not good enough. With the infusion of mandatory requirements for ethics training programs in some firms and self-imposed initiatives in others, we see a range of deliverables. To advance ethics in practice, a closer look at ethics training in the workplace is warranted. This volume attempts to better understand ethics in organizational settings by taking a focused look at the science of ethics training and best practices, areas for concern, specific techniques, application outcomes, how to cultivate an ethical work environment, and considering where opportunities for additional inquiry reside. Managers and practitioners reading this book will garner specific trends and useful techniques that can inform, guide, and improve their efforts to build ethical awareness and effective ethical decisionmaking within their organizations. Academic scholars will find this book useful, providing insight as to where additional research and empirical work is needed. (shrink)

Through a witty and engaging style, this book is for anyone who has a job (employees, managers, and leaders), and who wants to do the right thing, but aren't always sure what that means, how to go about it, or how to withstand the forces that push all of us away from being ethical. By poking fun at the ironies and hypocrisies of human behavior, Exercising Your Ethics prompts readers to leverage techniques that can help us become more deliberate about (...) choosing value-driven actions. In a world that seems to reward winning, regardless of how it is achieved, we need a clearer reason for wanting to be and become our best selves. This approach to business ethics is innovative, fresh, and evocative in that the serious subject is treated in an informal and adventurous manner, poking fun at the ironies and hypocrisies of human behavior. Readers will see how our race to achieve quarterly profits, combined with a self-indulgent consumption-based economy, has shaped our entire lives. Readers will delight in the book's humor, as the ironies of human interaction prompt introspection to consider how to better equip oneself with the knowledge, tools, and techniques to engage in and support others in the path to moral action at work. Bringing Ethics to Work explains business ethics in a way that is engaging, understandable and enables the reader to recognise behaviors in themselves and others. It is ideal for adult education (students in undergraduate, Masters, or professional degree programs) and training within organizational settings (employees, management, and future leaders). HR professionals, team leaders, professional coaches, and organizational ethics trainers will find the book particularly insightful and useful. (shrink)

A reflection on the philosophical concept of morality, its values and human conduct and the obligations of medical personnel to conform to the recognised standard practices.

We present this special issue on positive organizational ethics (POE) to highlight those pursuing positive subjective experiences, positive attributes of individuals and groups, and positive practices that contribute to ethical and virtuous behavior in organizations. Although prior research has offered some insight in this area, there is still much to be learned about how to cultivate and sustain ethical strength in different types of organizations and how goodness can emerge from and in spite of human failings. After describing the positive (...) movement, we position POE as a discrete area of inquiry within the broader positive behavioral sciences, at the intersection of positive behavioral studies and business ethics. After defining our terms and purpose for creating the POE domain, we introduce the articles in this special issue. The introduction concludes with suggested topics for future research. (shrink)

The pioneering ideas of Glenn D. Paige for a paradigm shift from killing to nonkilling are highlighted. The relevance of anthropology for this paradigm is advanced. The accumulating scientific evidence proves that nonviolent and peaceful societies not only exist, but are actually the norm throughout human prehistory and history. This scientific fact is elucidated through a historical inventory of the most important documentation. Ethnographic cases are summarized of the Semai as a nonviolent society, the transition from killing to nonkilling of (...) the Waorani, and the critiques of the representation of the Yanomami as a killing society. Several of the most important cross-cultural studies are discussed. The assertions of some of the most vocal opponents to this paradigm are refuted. The systemic cultural and ideological bias privileging violence and war over nonviolence and peace is documented. (shrink)

We argue that P. F. Strawson's hugely influential account of moral responsibility in ‘Freedom and Resentment’ (FR) is inextricably bound up with his barely known account of morality in ‘Social Morality and Individual Ideal’ (SMII). Reading FR through the lens of SMII has at least three far-reaching implications. First, the ethics–morality distinction in SMII gives content to Strawson's famous distinction between personal and moral reactive attitudes, which has often been thought to be a merely formal distinction. Second, the ethics–morality distinction (...) sheds light on the scope of moral responsibility in FR, which is narrower than commentators think. Third, Strawson's discussion of morality shows that he was not insensitive to issues of power, as several critics have claimed. The link between morality and power helps to make clear that Strawson allows for criticism of our moral responsibility practices. (shrink)

Multinational corporations (MNCs) have brought attention to the challenges of business ethics in intercultural settings. A lack of understanding regarding cultural pluralism in business ethics education has motivated some scholars to consider a broader lens, one that recognizes the influence of religion (Spalding and Franks 2012). Management awareness of the similarities and differences that stem from deeply held beliefs is essential, as unstated thoughts and feelings caninfluence starting assumptions, even before ethical decision-making processes begin. If deeply entrenched cultural traditions and (...) religious values remain implicit and/or misunderstood, collaborative efforts may be derailed due to an inadvertent lack of respect and understanding. Because many Westerners remain unfamiliar with Muslim-based beliefs, the authors advance business ethics education by offering an overview of business practices in the Middle East. A modeland exercise are presented as tools to promote awareness of cultural perspectives. This platform for understanding will help adult learners see how their personal origins can shape and influence management thought. (shrink)

"In the 12 case studies in this treasure of a book, various authors examine the critical, direction-finding moments in the work of such individuals as Charles Darwin, Jean Piaget, Robert Burns Woodward, William James, Anais Nin, and others." --Virginia Quarterly Review.

Background Dynamic consent has been proposed as a process through which participants and patients can gain more control over how their data and samples, donated for biomedical research, are used, resulting in greater trust in researchers. It is also a way to respond to evolving data protection frameworks and new legislation. Others argue that the broad consent currently used in biobank research is ethically robust. Little empirical research with cohort study participants has been published. This research investigated the participants’ opinions (...) of adding a dynamic consent interface to their existing study. Methods Adult participants in the Extended Cohort for E-health, Environment and DNA longitudinal cohort study who are members of the EXCEED Public and Participant Engagement Group were recruited. Four focus groups were conducted and analysed for thematic content. Discussion topics were derived from a review of the current literature on dynamic consent. Results Participants were in favour of many aspects of a dynamic consent interface, such as being able to update their information, add additional data to their records and choose withdrawal options. They were supportive provided it was simple to use and not intrusive. Participants expressed a markedly high level of trust in the study and its investigators and were unanimously happy with their current participation. No strong support was found for adding a dynamic consent interface to EXCEED. Conclusions Trust in the study researchers was the strongest theme found. Openness and good data security were needed to retain their trust. While happy to discuss dynamic consent, participants were satisfied with the current study arrangements. There were indications that changing the study might unnecessarily disturb their trust. This raised the question of whether there are contexts where dynamic consent is more appropriate than others. This study was limited by the small number of participants who were committed to the study and biased towards it. More research is needed to fully understand the potential impact of adding a dynamic consent interface to an existing cohort study. (shrink)

Naturalistic theories of disease appeal to concepts of biological function, and use the notion of dysfunction as the basis of their definitions. Debates in the philosophy of biology demonstrate how attributing functions in organisms and establishing the function-dysfunction distinction is by no means straightforward. This problematization of functional ascription has undermined naturalistic theories and led some authors to abandon the concept of dysfunction, favoring instead definitions based in normative criteria or phenomenological approaches. Although this work has enhanced our understanding of (...) disease and illness, we need not necessarily abandon naturalistic concepts of function and dysfunction in the disease debate. This article attempts to move towards a new naturalistic theory of disease that overcomes the limitations of previous definitions and offers advantages in the clinical setting. Our approach involves a re-evaluation of concepts of biological function employed by naturalistic theories. Drawing on recent insights from the philosophy of biology, we develop a contextual and evaluative account of function that is better suited to clinical medicine and remains consistent with contemporary naturalism. We also show how an updated naturalistic view shares important affinities with normativist and phenomenological positions, suggesting a possibility for consilience in the disease debate. (shrink)