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...

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.

The revised Common Rule includes a new option for the conduct of secondary research with identifiable data and biospecimens: regulatory broad consent. Motivated by concerns regarding autonomy and trust in the research enterprise, regulators had initially proposed broad consent in a manner that would have rendered it the exclusive approach to secondary research with all biospecimens, regardless of identifiability. Based on public comments from both researchers and patients concerned that this approach would hinder important medical advances, however, regulators decided to (...) largely preserve the status quo approach to secondary research with biospecimens and data. The Final Rule therefore allows such research to proceed without specific informed consent in a number of circumstances, but it also offers regulatory broad consent as a new, optional pathway for secondary research with identifiable data and biospecimens. In this article, we describe the parameters of regulatory broad consent under the new rule, explain why researchers and research institutions are unlikely to utilize it, outline recommendations for regulatory broad consent issued by the Secretary's Advisory Committee on Human Research Protections, and sketch an empirical research agenda for the sorts of questions about regulatory broad consent that remain to be answered as the research community embarks on Final Rule implementation. (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)

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)

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)

Sexual Violation in Islamic Law: Substance, Evidence, and Procedure By AzamHina, xi + 270 pp. Price HB £60.00. EAN 978–1107094246.

This book should be read by anyone with an interest in American Islam. After a brief introduction by the editor, Edward E. Curtis IV, twelve chapters explore va.

The pandemic creates unprecedented challenges to society and to health care systems around the world. Like all crises, these provide a unique opportunity to rethink the fundamental limiting assumptions and institutional inertia of our established systems. These inertial assumptions have obscured deeply rooted problems in health care and deflected attempts to address them. As hospitals begin to welcome all patients back, they should resist the temptation to go back to business as usual. Instead, they should retain the more deliberative, explicit, (...) and transparent ways of thinking that have informed the development of crisis standards of care. The key lesson to be learned from those exercises in rational deliberation is that justice must be the ethical foundation of all standards of care. Justice demands that hospitals take a safety‐net approach to providing services that prioritizes the most vulnerable segments of society, continue to expand telemedicine in ways that improve access without exacerbating disparities, invest in community‐based care, and fully staff hospitals and clinics on nights and weekends. (shrink)

Capitalizing on the hype surrounding stem cell research, numerous clinics around the world offer “stem cell therapies” for a variety of medical conditions. Despite questions about the safety and efficacy of these interventions, anecdotal evidence suggests a relatively large number of patients are traveling to receive these unproven treatments — a practice called “stem cell tourism.” Because these unproven treatments pose risks to individual patients and to legitimate translational stem cell research, stem cell tourism has generated substantial policy concern and (...) inspired attempts to reduce these risks through the development of guidelines for patients and medical practitioners. This paper examines the roles and responsibilities of physicians in patients' home countries with respect to patients' decisions to try unproven stem cell therapies abroad. Specifically, it examines professional guidance from two organizations — the American Medical Association and the International Society for Stem Cell Research — and assesses physicians' professional and legal obligations to patients considering unproven stem cell therapies. Then, drawing on qualitative interviews conducted with patients who traveled abroad for unproven stem cell treatments, it explores the roles that physicians actually play in patients' decisions and compares these actual roles with their professional and legal responsibilities. The paper concludes with a discussion of strategies to help improve the guidance physicians provide to patients considering unproven treatments. (shrink)

Stem cell science, using both embryonic and a variety of tissue-specific stem cells, is advancing rapidly and offers promise to improve medical care in the future. Yet, with the notable exception of hematopoietic stem cell transplantation, a long-established approach to treating certain cancers of the blood system, this promise is long term and most stem cell research focuses on basic scientific questions or the collection of pre-clinical data. Although some clinical trials are underway, most are focused on safety, and novel (...) effective therapy is likely a long way off. Despite the preliminary nature of most stem cell research, however, numerous clinics around the world offer stem cell “therapies” to patients today outside the context of a clinical trial. Although the number of patients who have received these stem cell-based interventions is unknown, anecdotal reports suggest a substantial population of patients is willing to try them, despite unresolved questions about their safety and efficacy. (shrink)

American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines conflict or (...) come to different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other. (shrink)

The U.S. Department of Health and Human Services has proposed substantial changes to the current regulatory system governing human subjects research in its Advanced Notice of Proposed Rulemaking, entitled “Human Subjects Research Protections: Enhancing Protections for Research Subjects and Reducing Burden, Delay, and Ambiguity for Investigators.” Some of the most significant proposed changes concern the use of biospecimens in research. Because research involving biological materials begins with an initial interaction with an individual, such research falls squarely within the human subjects (...) research regulatory framework known as the “Common Rule,” which applies to research conducted or funded by the HHS and the other signatory agencies and departments. However, as described in detail below, much biospecimen research may fall within exemptions and exceptions under the Common Rule and, thus, may be conducted without consent. The ANPRM proposes requiring written consent for research use of biospecimens, even if the biospecimens were initially collected for a purpose other than research or have been stripped of identifiers. (shrink)

In this thorough compendium, nineteen accomplished scholars explore, in some manner the values they find inherent in the world, their nature, and revelence through the thought of Frederick Ferré. These essays, informed by the insights of Ferré and coming from manifold perspectives—ethics, philosophy, theology, and environmental studies, advance an ambitious challenge to current intellectual and scholarly fashions.

In this thorough compendium, nineteen accomplished scholars explore, in some manner the values they find inherent in the world, their nature, and revelence through the thought of Frederick FerrZ. These essays, informed by the insights of FerrZ and coming from manifold perspectives—ethics, philosophy, theology, and environmental studies, advance an ambitious challenge to current intellectual and scholarly fashions.

This article reviews recent developments in health care law, focusing on the engagement of law as a partner in health care innovation. The article addresses: the history and contents of recent United States federal law restricting the use of genetic information by insurers and employers; the recent federal policy recommending routine HIV testing; the recent revision of federal policy regarding the funding of human embryonic stem cell research; the history, current status, and need for future attention to advance directives; the (...) recent emergence of medical–legal partnerships and their benefits for patients; the obesity epidemic and its implications for the child’s right to health under international conventions. (shrink)

This article reviews recent developments in health care law, focusing on the engagement of law as a partner in health care innovation. The article addresses: the history and contents of recent United States federal law restricting the use of genetic information by insurers and employers; the recent federal policy recommending routine HIV testing; the recent revision of federal policy regarding the funding of human embryonic stem cell research; the history, current status, and need for future attention to advance directives; the (...) recent emergence of medical–legal partnerships and their benefits for patients; the obesity epidemic and its implications for the child’s right to health under international conventions. (shrink)

This article reviews recent developments in health care law, focusing on controversy at the intersection of health care law and culture. The article addresses: emerging issues in federal regulatory oversight of the rapidly developing market in direct-to-consumer genetic testing, including questions about the role of government oversight and professional mediation of consumer choice; continuing controversies surrounding stem cell research and therapies and the implications of these controversies for healthcare institutions; a controversy in India arising at the intersection of abortion law (...) and the rights of the disabled but implicating a broader set of cross-cultural issues; and the education of U.S. health care providers and lawyers in the theory and practice of cultural competency. (shrink)

This article provides an ecological theory of face perception that elucidates the basis of the various perceptions. It then reviews research on first impressions elicited by facial qualities that are associated with fitness, emotion, race, age, and sex, in each case making links to ecological theory. It aims to identify facial qualities that inform social perceptions and reflect the zeitgeist at the time in social psychology. The emphasis is on understanding the cognitive mechanisms engaged in social perception, and this is (...) typically accomplished by providing information about social qualities in lists of trait words. The article demonstrates face perception research pertinent to the detection of socially relevant qualities in faces—attractiveness, emotions, race, age, and sex—as well as associated behavioral affordances, which have typically been assessed by trait ratings. (shrink)

This research addresses the question of whether men and women in sales differ in their ethical attitudes and decision making. The study asked 209 subjects to respond to 20 ethical scenarios, half of which were "relational" and half "non-relational." The study concludes (1) that there are significant ethical differences between the sexes in situations that involve relational issues, but not in non-relational situations, and (2) that gender-based ethical differences change with age and years of experience. The implications of these finding (...) for sales organizations are discussed. (shrink)

Smith, Glass, and Miller have reported a meta-analysis of over 500 studies comparing some form of psychological therapy with a control condition. They report that when averaged over all dependent measures of outcome, psychological therapy is. 85 standard deviations better than the control treatment. We examined the subset of studies included in the Smith et al. metaanalysis that contained a psychotherapy and a placebo treatment. The median of the mean effect sizes for these 32 studies was. 15. There was a (...) nonsignificant inverse relationship between mean outcome and the following: sample size, duration of therapy, use of measures of outcome other than undisguised self-report, measurement of outcome at follow-up, and use of real patients rather than subjects solicited for the purposes of participation in a research study. A qualitative analysis of the studies in terms of the type of patient involved indicates that those using psychiatric outpatients had essentially zero effect sizes and that none using psychiatric inpaticnts provide convincing evidence for psychotherapeutic effectiveness. The onty studies clearly demonstrating significant effects of psychotherapy were the ones that did not use real patients. For the most part, these studies involved small samples of subjects and brief treatments, occasionally described in quasibeliavioristic language. It was concluded that for real patients there is no evidence that the benefits of psychotherapy are greater than those of placebo treatment. (shrink)

Abstract (German version follows): -/- This paper develops a new proposal for a coherentist business ethic in which ethically justified and empirically supported proposed solutions to economic problems are developed through a coherentist process of adjustments between the three levels of (1) conception of problem and its solution, (2) positive economic theory, and (3) ethical theories. Using an example, it illustrates how in this framework, Homann's business ethics gains in validity and relevance but loses its claim to universality. // -/- (...) Diese Arbeit entwickelt eine kohärentistische Wirtschaftsethik, in der ethisch begründete und empirisch gestützte Lösungsvorschläge für ökonomische Probleme durch einen kohärentistischen Anpassungsprozess zwischen den drei Ebenen (1) Auffassung von Problem und Lösungsansatz, (2) positive ökonomische Theorie, sowie (3) ethischen Theorien erarbeitet werden. Anhand eines Beispiels wird illustriert, wie Homanns Wirtschaftsethik in diesem Rahmen an Validität und Relevanz gewinnt, jedoch ihren Universalitätsanspruch verliert. (shrink)

It is now well-known that Newton–Cartan theory is the correct geometrical setting for modelling the quantum Hall effect. In addition, in recent years edge modes for the Newton–Cartan quantum Hall effect have been derived. However, the existence of these edge modes has, as of yet, been derived using only orthodox methodologies involving the breaking of gauge-invariance; it would be preferable to derive the existence of such edge modes in a gauge-invariant manner. In this article, we employ recent work by Donnelly (...) and Freidel in order to accomplish exactly this task. Our results agree with known physics, but afford greater conceptual insight into the existence of these edge modes: in particular, they connect them to subtle aspects of Newton–Cartan geometry and pave the way for further applications of Newton–Cartan theory in condensed matter physics. (shrink)

Previous discussions on the value of sport in remote locations have concentrated on 1) environmental and process concerns, with the rejection of competition and goal-directed or use oriented activity, or 2) the value of risk and dangerous sport for self-affirmation. It is argued that the value of risk in remote sport is in self-knowledge rather than self-affirmation and that risk in remote sport, while enhancing certain kinds of experience, is not necessary. The value of remote sport is in offering the (...) opportunity for experience that enhances the participants’ knowledge both of self and of the environment with which they interact. (shrink)

The modern state claims supreme authority over the lives of all its citizens. Drawing together political philosophy, jurisprudence, and public choice theory, this book forces the reader to reconsider some basic assumptions about the authority of the state. Various popular and influential theories - conventionalism, contractarianism, and communitarianism - are assessed by the author and found to fail. Leslie Green argues that only the consent of the governed can justify the state's claims to authority. While he denies that there (...) is a general obligation to obey the law, he nonetheless rejects philosophical anarchism and defends civility - the willingness to tolerate some imperfection in institutions - as a political virtue. (shrink)

Six schools of thought can be detected in the development of evolutionary theory in German paleontology between 1859 and World War II. Most paleontologists were hardly affected in their research by Darwin's Origin of Species. The traditionalists accepted evolution within lower taxa but not for organisms in general. They also rejected Darwin's theory of selection. The early Darwinians accepted Darwin's theory of transmutation and theory of selection as axioms and applied them fruitfully to the fossil record, thereby laying the foundation (...) for the new research areas of phylogeny and paleo-biology. The enthusiasm of the early Darwinians faded when the fossil record and the problems of its interpretion became more widely known. The pluralists of the turn of the century invented and adopted a wealth of hypothetical mechanisms in order to explain individual features of the fossil record. They failed, however, to provide one coherent theory. Dissatisfaction with this situation led to adoption of a dogmatic neo-Lamarckism, which was regarded as a coherent theory providing a fruitful research program. The rejection of the Lamarckian mechanism early in this century left paleontologists with only one kind of evolutionary mechanism: inner causes.Like many neo-Lamarckians several orthogeneticists were highly interested in adaptation and did not see any contradiction between the inner causes of evolution and adaptation. The dominance of stratigraphical research programs in paleontology led in the 1930s and 1940s to a decrease in interest in adaptation. Stratigraphical records of taxa were accepted as meaningful in the context of evolutionary theory. Orthogenesis and the new concepts of saltation and cyclicism were amalgamated into one theory : typostrophism. This theory dominated German paleontology for decades after the war and only recently has the synthetic theory been seriously considered.Evolution was never very intensively discussed in German paleontology in the hundred years after Darwin's book. Most information used here comes from textbooks or from papers given on special occasions. It has been impossible to summarize how members of one school defended their views or discussed the ideas of competing schools. (shrink)

This book marks a total departure from previous studies of the Boxer War. It evaluates the way the war was perceived and portrayed at the time by the mass media. As such the book offers insights to a wider audience than that of sinologists or Chinese historians. The important distinction made by the author is between image makers and eyewitnesses. Whole categories of powerful image makers, both Chinese and foreign, never saw anything of the Boxer War but were responsible for (...) disseminating images of that war to millions of people in China and throughout the world. (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)