Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...) research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance. (shrink)

Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.

I väntan på den engelska Festschriften, den definitiva biografin eller de självförhärligande memoarerna kommer här för första gången en samling porträtt av den internationellt mest uppmärksammade svenska statsvetaren, den kontroversielle samhällsdebattören Bo Rothstein. Få samhällsforskare har med sådan intensitet tagit universitetens tredje uppgift till intäkt för att ifrågasätta gängse uppfattningar om sakernas tillstånd i riket. Många är de läsare, tittare eller åhörare som knappast kunnat undgå att beröras av hans synpunkter på allt från metoo till tiggeri, något färre är (...) nog de som på allvar tagit del av hans forskningsresultat om korruption och statsförvaltning. I denna bok tecknar ett tjugotal svenska forskare, författare och vänner sin bild av forskaren, debattören och livsnjutaren Bo Rothstein."--Back cover. (shrink)

Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors then (...) negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. (shrink)

In the United States, final amendments to the Federal Policy for the Protection of Human Subjects (“the Common Rule”) were published on January 19, 2017, and they will take effect on January 21, 2019. One of the most widely discussed provisions is that for the first time, federal regulations governing research with humans authorize the use of broad consent for future, unspecified research on individually identifiable biospecimens and associated data. Many questions have been raised about broad consent, including what effect (...) it will have on research and whether it adequately protects the interests of research participants.There are lessons to be learned for the U.S. and other countries by looking to countries that already have experience with broad consent for biobank collection and with the storage and subsequent use of the biospecimens and data. This article describes how broad consent works in five countries—Canada (in Quebec), Israel, Nigeria, Taiwan, and the United Kingdom—and with different types of biobanks: national biobanks, federated biobanks, and regional biobanks. Evaluating the provisions and challenges of the broad consent approaches in these countries can inform policies for this increasingly used approach to biobank regulation. (shrink)

This study described the relationships between academic class and student moral sensitivity and reasoning and between curriculum design components for ethics education and student moral sensitivity and reasoning. The data were collected from freshman (n = 506) and senior students (n = 440) in eight baccalaureate nursing programs in South Korea by survey; the survey consisted of the Korean Moral Sensitivity Questionnaire and the Korean Defining Issues Test. The results showed that moral sensitivity scores in patient-oriented care and conflict were (...) higher in senior students than in freshman students. Furthermore, more hours of ethics content were associated with higher principled thinking scores of senior students. Nursing education in South Korea may have an impact on developing student moral sensitivity. Planned ethics content in nursing curricula is necessary to improve moral sensitivity and moral reasoning of students. (shrink)

DNA identification is being used in ever-widening ways, including databases of greater scope, familial and lowstringency searches, and DNA dragnets. After examining the law enforcement and privacy interests, the article concludes that forensic DNA uses must be consistent with privacy and civil liberties.

Perceived behavioral integrity involves the employee’s perception of the alignment of the manager’s words and deeds. This meta-analysis examined the relationship between perceived behavioral integrity of managers and the employee attitudes of job satisfaction, organizational commitment, satisfaction with the leader and affect toward the organization. Results indicate a strong positive relationship overall (average r = 0.48, p<0.01). With only 12 studies included, exploration of moderators was limited, but preliminary analysis suggested that the gender of the employees and the number of (...) levels between the employee and the manager are potential moderators of the relationship. In the current sample of studies, country where the research was conducted did not seem to have any moderating effects. In addition to suggesting further investigation of potential moderators, we call for research that examines the relationship between behavioral integrity and outcomes that include individual behavior and organizational performance. (shrink)

Consensus around what constitutes researcher conflicts of interest (COIs) and awareness of their influence on our research are two critical steps in ensuring the integrity of our science. In this research, data were collected from individual scholars via 2 surveys 5 years apart and from journals and associations to examine the level of social consensus and moral awareness among scholars, journals, and associations regarding researcher COIs. Although we observed increases in level of social consensus and moral awareness between 2012 and (...) 2017, results still revealed limited agreement about what relationships constitute a COI and limited awareness about the presence of and the ethical issues surrounding COIs. Although all journals and associations we examined supported COI disclosure, most did not provide researchers with detailed COI-related information, guidance, or disclosure tools. Limited social consensus and moral awareness regarding COIs is problematic because it inhibits the recognition, disclosure, and management of COIs and limits ethical decision making. We need to continue and enhance discussions about COIs and aim to create consensus and awareness where we do not have it with the goal of reducing potential scientific misconduct related to COIs. (shrink)

Privacy is protected in biobank-based research in the US primarily by the Health Insurance Portability and Accountability Act Privacy Rule and the Federal Policy for Protection of Human Subjects. Neither rule, however, was created to function in the unique context of biobank research, and therefore neither applies to all biobank-based research. Not only is it challenging to determine when the HIPAA Privacy Rule or the Common Rule apply, but these laws apply different standards to protect privacy. In addition, many other (...) federal and state laws may be applicable to a particular biobank, researcher, or project. US law also does not directly address international sharing of data or specimens outside of the EU–US Safe Harbor Agreement, which only applies to receipt of data by certain US entities from EU countries, and is in the process of revision. Although new rules would help clarify privacy protections in biobanking, any implemented changes should be studied to determine the sufficiency of the protections as well as its ability to facilitate or hinder international collaborations. (shrink)

This paper is an update of the documents we have concerning the Acts of the Christian martyrs, focused on three main aspects: 1) the kind of acts we know of and their classification from the point of view of their historic value; 2) the versions or editions of the texts that are most accepted by scholars; 3) the relevance of the different parts that make up these documents in order to discern the original text from passages that were rewritten or (...) underwent later variations. In this way, the article offers an exhaustive list of the documents for use in researching Christian martyrs in the Roman period. (shrink)

This is a welcome reprint of a book that continues to grow in importance.

In recent literature, panpsychism has been defended by appeal to two main arguments: first, an argument from philosophy of mind, according to which panpsychism is the only view which successfully integrates consciousness into the physical world (Strawson 2006; Chalmers 2013); second, an argument from categorical properties, according to which panpsychism offers the only positive account of the categorical or intrinsic nature of physical reality (Seager 2006; Adams 2007; Alter and Nagasawa 2012). Historically, however, panpsychism has also been defended by appeal (...) to a third argument based on considerations about the nature and observability of causation. This argument has not been much discussed in recent times. Here is a concise version from William James: "… the concrete perceptual flux, taken just as it comes, offers in our own activity-situations perfectly comprehensible instances of causal agency … If we took these experiences as the type of what actual causation is, we should have to ascribe to cases of causation outside of our life, to physical cases also, an inwardly experiential nature. In other words, we should have to espouse a so-called “pan-psychic” philosophy" (James 1911: 218). James here suggests that we have direct experience of causation in our own agency. He thereby directly contradicts David Hume, who famously denied that we have any experience of causation. James goes on to claim that if this experience is representative of causation in general, it follows that all causation is mental, and that panpsychism is true. This kind of argument for panpsychism can be called the argument from (experience of) causation. This chapter offers, first, a history of this argument and arguments closely related to it, and second, an analysis of the argument – is it valid, are its premises in any way defensible, and how does it relate to the other, more popular arguments for panpsychism from philosophy of mind and categorical properties? (shrink)

In this paper we explore the interpretation of quantity expressions in Yudja, an indigenous language spoken in the Amazonian basin, showing that while the language allows reference to exact cardinalities, it does not generally allow reference to exact measure values. It does, however, allow non-exact comparison along continuous dimensions. We use this data to argue that the grammar of exact measurement is distinct from a grammar allowing the expression of exact cardinalities, and that the grammar of counting and the grammar (...) of measurement may use numerals with different, though related interpretations. As Yudja shows, the language of measurement is not automatically acquired along with the knowledge of exact numeral expressions. We show that the ‘gap’ between prelinguistic intuitions about quantity in terms of numerosity and counting, which is bridged by the learning of language expressing exact cardinality, is paralleled by a similar gap between prelinguistic intuitions about quantity on a continuous dimension and measuring: this gap too must be bridged by language which expresses exact measure values. Our results suggest that the enculturation process by which we develop skills to perform abstract operations in the domain of measurement is (1) language dependent and (2) distinct from the process by which we learn to perform abstract calculations in the cardinal domain. (shrink)

The author presents and defends three theses: (1) "the first is that it is not profitable for us at present to do moral philosophy; that should be laid aside at any rate until we have an adequate philosophy of psychology." (2) "the second is that the concepts of obligation, And duty... And of what is morally right and wrong, And of the moral sense of 'ought', Ought to be jettisoned if this is psychologically possible...." (3) "the third thesis is that (...) the differences between the well-Known english writers on moral philosophy from sidgwick to the present day are of little importance." (staff). (shrink)

Throughout, the emerging theory of aspect is extensively compared with alternative theories, and the book concludes with general reflections on the semantic ...

This is the first comprehensive study of Nietzsche's earliest (and extraordinary) book, The Birth of Tragedy (1872). When he wrote it, Nietzsche was a Greek scholar, a friend and champion of Wagner, and a philosopher in the making. His book has been very influential and widely read, but has always posed great difficulties for readers because of the particular way Nietzsche brings his ancient and modern interests together. The proper appreciation of such a work requires access to ideas that cross (...) the boundaries of conventional specialisms. This is now provided by M. S. Silk and J. P. Stern in their joint study of Nietzsche's book. They examine in detail its content, style and form; its strange genesis and hybrid status; its biographical background and the controversy engendered by its publication; its value as an account of ancient Greek culture and as a theory of tragedy and music; its relation to other theories of tragedy; and its place in the history of German ideas and in Nietzsche's own philosophical career. (shrink)

The book is an investigation of the semantics of numericals, counting and measuring, and its connection to the mass/count distinction from a theoretical and crosslinguistic perspective. It reviews some recent major linguistic results in these topics, and presents the author's new research including in-depth case studies of a number of typologically unrelated languages.

Background. The COVID-19 pandemic necessitated drastic changes to undergraduate medical training at the University of Botswana (UB). To save the academic year when campus was locked down, the Department of Medical Education conducted a needs assessment to determine the readiness for emergency remote teaching (ERT) of the Faculty of Medicine, UB. Objectives. To report on the findings of needs assessment surveys to assess learner and teaching staff preparedness for fair and just ERT, as defined by philosopher John Rawls. Methods. Needs (...) assessment surveys were conducted using Office 365 Forms distributed via WhatsApp, targeting medical students and teaching staff during the 5 undergraduate years. Data were analysed quantitatively and qualitatively. Results. Ninety-two percent (266/289) of students and 73.5% (62/84) of teaching staff responded. Surveys revealed a high penetration of smartphones among students, but poor internet accessibility and affordability in homes. Some teaching staff also reported internet and device insufficiencies. Only WhatsApp was accessible to students and teaching staff. Conclusions. For equitable access to ERT in the future, the surveys revealed infrastructural improvement needs, including wider, stronger, affordable WiFi coverage within Botswana and enhanced digital infrastructures in educational institutions, with increased support for students. (shrink)

In financial disputes involving research, the parties are traditionally individual researchers and their institutions, biotech and pharmaceutical companies, and other entities engaged in the commercial development of biomedical research. Occasionally, research subjects claim that researchers have misled them or misappropriated their biological materials to derive financial gain. The best known example is the case of Moore v. Regents of the University of California, decided in 1990.With new developments in genomics, large-scale repositories of tissue and other biological specimens are increasingly important. (...) Biobanks have been established by various researchers, commercial entities, health-care institutions, and even entire countries. Individuals who contribute specimens almost always retain no commercial interest in any resulting research and language to that effect is now customarily included in informed consent documents signed at the time the specimen is given. Suppose, however, that the research subjects actually collect the specimens themselves, recruit the researcher, and provide financial support for the research. (shrink)

Greek text, english translation and commentary on the surviving fragments of Empedocles (fragments as known in 1981, does not include more recent finds).

Public health is a dynamic field. Outbreaks of new diseases, as well as changing patterns of population growth, economic development, and lifestyle trends all may threaten public health and thus demand a public health response. As the practice of public health evolves, there is an ongoing need to reassess its scientific, ethical, legal, and social underpinnings. Such a reappraisal must consider the disagreement among public health officials, public health scholars, elected officials, and the public about the proper role of public (...) health and the distinctions, for example, between public health and clinical care, and public health and health promotion.In this article I will attempt to characterize the main points of contention as well as offer my own views regarding the proper scope of public health. Greater clarity and consensus on the meaning of public health are likely to lead to more efficient and effective public health interventions as well as increased public and political support for public health activities. (shrink)

Public health is a dynamic field. Outbreaks of new diseases, as well as changing patterns of population growth, economic development, and lifestyle trends all may threaten public health and thus demand a public health response. As the practice of public health evolves, there is an ongoing need to reassess its scientific, ethical, legal, and social underpinnings. Such a reappraisal must consider the disagreement among public health officials, public health scholars, elected officials, and the public about the proper role of public (...) health and the distinctions, for example, between public health and clinical care, and public health and health promotion.In this article I will attempt to characterize the main points of contention as well as offer my own views regarding the proper scope of public health. Greater clarity and consensus on the meaning of public health are likely to lead to more efficient and effective public health interventions as well as increased public and political support for public health activities. (shrink)

A 'social trap' is a situation where individuals, groups or organisations are unable to cooperate owing to mutual distrust and lack of social capital, even where cooperation would benefit all. Examples include civil strife, pervasive corruption, ethnic discrimination, depletion of natural resources and misuse of social insurance systems. Much has been written attempting to explain the problem, but rather less material is available on how to escape it. In this book, Bo Rothstein explores how social capital and social trust (...) are generated and what governments can do about it. He argues that it is the existence of universal and impartial political institutions together with public policies which enhance social and economic equality that creates social capital. By introducing the theory of collective memory into the discussion, Rothstein makes an empirical and theoretical claim for how universal institutions can be established. (shrink)