Background Families whose child has unexplained intellectual or developmental differences often hope that a genetic diagnosis will lower barriers to community-based therapeutic and support services. However, there is little known about efforts to mobilize genetic information outside the clinic or how socioeconomic disadvantage shapes and constrains outcomes.Methods We conducted an ethnographic study with predominantly socioeconomically disadvantaged families enrolled in a multi-year genomics research study, including clinic observations and in-depth interviews in English and Spanish at multiple time points. Coding and thematic (...) development were used to collaboratively interpret fieldnotes and transcripts.Results Thirty-two families participated. Themes included familial expectations that a genetic diagnosis could be translated into information, understanding, and assistance to improve the quality of a child’s day-to-day life. After sequencing, however, genetic information was not readily converted into improved access to services beyond the clinic, with families often struggling to use a genetic diagnosis to advocate for their child.Conclusion Families’ ability to use a genetic diagnosis as an effective advocacy tool beyond the clinic was limited by the knowledge and resources available to them, and by the eligibility criteria used by therapeutic service providers’ – which focused on clinical diagnosis and functional criteria more than etiologic information. All families undertaking genomic testing, particularly those who are disadvantaged, need additional support to understand the limits and potential benefits of genetic information beyond the clinic. (shrink)

There has been a radical turn towards ideals of patient autonomy and person-centred care, and away from historically entrenched forms of medical paternalism, in the last 50 years of nursing practice. However, along the way, some shades of grey between the areas of ideal patient participation and of outright patient non-participation have been missed. The current article constitutes an exploratory proof-of-concept study of the real-world traction of a distinction-straddling concept of ‘constrained participation’ and its two sub-concepts of (...) ‘fought-for participation’ and ‘forced-to participation’. In order to concretise these additions to the conceptual terrain of person-centred participation and its anti-theses, we apply them to themes in the care of vulnerable older adults. In the final section, we close by eliciting some characterological, educational and clinical implications of adding these new tools also to the conceptual repertoire of nursing practice and education. (shrink)

I argue that people are sometimes justified in participating in unjust wars. I consider a range of reasons why war might be unjust, including the cause which it is fought for, whether it is proportionate, and whether it wrongly uses resources that could help others in dire need. These considerations sometimes make fighting in the war unjust, but sometimes not. In developing these claims, I focus especially on the 2003 Iraq war.

Without drastic adjustment, this system cannot last much longer," writes Van Reybrouck. "If you look at the decline in voter turnout and party membership, and at the way politicians are held in contempt, if you look at how difficult it is to form governments, how little they can do and how harshly they are punished for it, if you look at how quickly populism, technocracy and anti-parliamentarianism are rising, if you look at how more and more citizens are longing for (...) participation and how quickly that desire can tip over into frustration, then you realize we are up to our necks." Not so very long ago, the great battles of democracy were fought for the right to vote. Now, Van Reybrouck writes, "it's all about the right to speak, but in essence it's the same battle, the battle for political emancipation and for democratic participation. We must decolonize democracy. We must democratize democracy." As history, Van Reybrouck makes the compelling argument that modern democracy was designed as much to preserve the rights of the powerful and keep the masses in line, as to give the populace a voice. As change-agent, Against Elections makes the argument that there are forms of government, what he terms sortitive or deliberative democracy, that are beginning to be practiced around the world, and can be the remedy we seek. In Iceland, for example, deliberative democracy was used to write the new constitution. A group of people were chosen by lot, educated in the subject at hand, and then were able to decide what was best, arguably, far better than politicians would have. A fascinating, and workable idea has led to a timely book to remind us that our system of government is a flexible instrument, one that the people have the power to change. (shrink)

Can an understanding be formed of how sensory experience might be presented or manipulated in visual art in order to promote a relational concept of the senses, in opposition to the customary, capitalist notion of sensation as a private possession, as a sensory impression that is mine? I ask the question in the light of recent visual art theory and practice which pursue relational, ecological ambitions. As Arnold Berleant, Nicolas Bourriaud, and Grant Kester see it, ecological ambition and artistic form (...) should correspond, but they fail to recognize sensation as a site where the ecological cause can be fought. Jacques Rancière argues for the political force of the senses, but his distribution of the sensible does not address the particularity of sensory experience. I identify the difference between these approaches within recent relational or ecological aesthetics and my position on sensibility, and indicate some of the problems involved in referring to the senses. I set out the concepts that are central to the cultivation of relational sensibility: style, autofiguration, and the mobility of sensory meaning, extrapolated from Maurice Merleau-Ponty’s discussion of Paul Cézanne. They amount to positioning the senses ontologically as movements along lines of conceptual-sensory connection and implication, based on the transfer of meanings created artistically through style and autofiguration. (shrink)

The master narrative of Apartheid South Africa created a specific identity for white boys and men and, together with this identity, a very particular role and place within the South African context. This identity was exemplified in the men who were conscripted into the military from 1967 until 1994, and who participated in operations on the border regions of Namibia and Angola as well as within local townships in the war of liberation against apartheid and minority rule. Many veterans have (...) been left grappling not only with the traumas associated with combat but also with the loss of their identities as war heroes in a country under changed political control. As a result, many of their personal stories and experiences of combat have been silenced by society at large and also, to varying degrees, within their own families, the Church, and among the younger generation who have grown up under a different dispensation. The conflict between vacillating narratives of villains who fought on the wrong side of history and victims of a closed socialisation system has supported the identity struggle faced by many veterans today. Against this backstory, this article explores the effects of storytelling as a trauma release using a narrative approach.Contribution: This article offers a contribution to the use of storytelling in pastoral conversations as a trauma release for untold stories. This insight links to the focus and scope of the journal as a pastoral narrative approach has been used under the umbrella of Practical Theology. (shrink)

We report three studies which test a sexual selection hypothesis for male war heroism. Based on evolutionary theories of mate choice we hypothesize that men signal their fitness through displaying heroism in combat. First, we report the results of an archival study on US-American soldiers who fought in World War II. We compare proxies for reproductive success between a control sample of 449 regular veterans and 123 surviving Medal of Honor recipients of WWII. Results suggest that the heroes sired (...) more offspring than the regular veterans. Supporting a causal link between war heroism and mating success, we then report the results of two experimental studies. We find evidence that female participants specifically regard men more sexually attractive if they are war heroes. This effect is absent for male participants judging female war heroes, suggesting that bravery in war is a gender specific signal. Finally, we discuss possible implications of our results. (shrink)

My paper concerns a rather extraordinary generation which arose in France in the 1930s, reacting against Action française which had long infected French Catholic political and social thought. Action française was a line of thought — and a political movement — inspired by Charles Maurras, himself an agnostic, basing his political thinking on a form of naturalism and positivism which clearly divorced politics from religion and ethics. Pope Pius XI forbade the participation of Catholics in that movement in 1926, (...) which was quite a blow and provoked quite an uproar since the majority of Catholic intellectuals were from Action française.The great Thomists of the time in particular and the bishops were reluctant in following the Pope's condemnation. Already the following year however, Jacques Maritain, who had sided with Action française for a long time, rallied to Rome. He contributed to a famous book Rome has spoken . Many followed him. He subsequently changed his basic views, fought for an integration of politics with morality as well as for a certain integration of politics and the Christian message, under the name Humanisme intégral, the title of one of his books. Jacques Maritain was born in 1882, died in 1975. The decisive years of his work are clearly the '30s and early '40s. (shrink)

This article examines the process for the eviction of tenants, which offers landlords a swift path for obtaining an eviction order against their tenants, as a case study exposing the politics of procedure. It shows that the PET is but one stage in a longstanding battle waged between two interest groups—landlords and tenants—involving both substantive law and procedural law. But while the story of their conflict over substantive law, fought in the parliament through the regular legislative process, is well-known, (...) the story of the procedural amendments, despite their immense impact, remains shrouded in mystery and is told here for the first time. The reason for that, we argue, is that despite the vast impact of procedure on substantive right, many in the Israeli legal system mistakenly view civil procedure rules as highly technical and neutral directives for the day-to-day operation of the litigation process. The conclusion from such a view is that rulemaking should be left to expert legal technicians and court administrators and that transparency mechanisms or public participation are to be avoided as unnecessary due to the costs and burdens they impose on the rulemaking process. The article concludes with a call for overhauling the rulemaking process in Israel. We argue that the secretive and opaque process is anathema to democracy. Bearing in mind that procedural rules are inevitably imbued with substantive values and have an enormous effect on the substantive rights of the citizenry, the rulemaking process should be radically altered to enable all interested parties to take part in the process, making it far more transparent and subject to public scrutiny in all its stages. (shrink)

The United States has been waging the “War on Terror” for nearly two decades. Obscured among the more obvious costs of that war is the moral injury borne by many of the soldiers who have fought and participated in it. Unlike post-traumatic stress disorder, which is rooted in fear, moral injury is rooted in shame, shame for having committed a moral transgression, a violation of the moral code. Haunted by the memory of their misdeeds, these soldiers are plagued by (...) all manner of illness and infirmity, from anxiety and depression to substance abuse and suicide. In this article, I explore whether these soldiers have a right to forget, one that would entitle them to use pharmacological or psychological manipulation to cleanse their minds of the memory that they have dirtied their hands, and in that way relieve themselves of the anguish and torment from which they suffer. (shrink)

For more than a century, the historiography of Mexican independence had reached a consensus. There were, of course, debates, but the core of the interpretations seemed to be the same: the Mexican people, dominated by a foreign power, fought for their independence under the leadership of a group of enlightened Creoles, influenced by French revolutionary ideas and Americans. This consensus could not be sustained in the light of research on the social history of the colonial period. In the1990s, the (...) new historiography framed the process of independence in the Hispanic revolutions. They approached the social groups that participated in that civil war. Although there is a plurality of historiographical themes and interests, in the 21st century, appeared a new consensus that, perhaps, should be broken as happened with the previous one. (shrink)

The issue of aftercare for participants in clinical research was explored in the context of an asthma drug trial. Although there may be financial constraints and practical difficulties with implementation, the results show that it may be feasible for clinical investigators and commercial sponsors to take on some limited responsibility for the medical care of research subjects after clinical trials. However, the ethical implications for this practice remain unclear. On the one hand, society may have a moral obligation to compensate (...) and reward some of its members who assume the risk of research subjects for the benefit of society as a whole. On the other hand, the promise of aftercare may provide an inducement to volunteers which, under certain conditions may be considered morally wrong and scientifically unsound. (shrink)

The article explores the challenges of ensuring voluntary and informed consent which is obtained from potential research subjects in the north‐eastern part of Romania. This study is one of the first empirical papers of this nature in Romania. The study used a quantitative survey design using the adapted Quality of Informed Consent (QuIC) questionnaire. The target population consisted of 100 adult persons who voluntarily enrolled in clinical trials. The informed consent form must contain details regarding the potential risks and benefits, (...) the aim of the clinical trial, study design, confidentiality, insurance and contact details in case of additional questions. Our study confirmed that although all required information was included in the ICF, few clinical trial participants truly understood it. We also found that the most important predictive factor for a good subjective and objective understanding of the clinical trial was the level of education. Our study suggests that researchers should consider putting more effort in order to help clinical trials participants achieve a better understanding of the informed consent. In this way they will ensure that participants’ decision‐making is meaningful and that their interests are protected. (shrink)

Objective To document the legal guardian-related barriers to consent procurement, and their stated reasons for non-participation in a paediatric critical care research study.Study design A multicentre, prospective, cohort study.Participants Legal guardians of children who participated in a multicentre study on adrenal insufficiency in paediatric critical illness. Data were collected on all consent encounters in the main study.Methods Screening data, reasons for consent not being obtained, paediatric risk of mortality scores and age were collected on all 1707 patients eligible for (...) participation in the Adrenal Insufficiency Study.Results The main barriers to approaching legal guardians for consent were lack of availability of the legal guardians and language barriers . Legal guardians of 917 patients were approached with an overall consent rate of 42% . 81% of the 528 legal guardians who declined consent provided an unsolicited reason for refusal. The three most commonly stated reasons were: being overwhelmed , not wanting anything else done to their child and not wanting an additional medication . In addition, 14.2% cited research-related concerns as the reason for their non-participation.Conclusions Barriers to consent procurement in a non-therapeutic paediatric critical care study appear to occur at many levels with lack of availability of legal guardians, and legal guardians feeling overwhelmed, being the most commonly recorded reasons. Further research into the impact of these findings on the validity and generalisability of the results of such studies is necessary prior to the development and study of future consent models. (shrink)

In this article we explore the ethical issues raised by permitting patients to pay for participation in clinical trials, and discuss whether there are any categorical objections to this practice. We address key considerations concerning payment for participation in trials, including patient autonomy, risk/benefit and justice, taking account of two previous critiques of the ethics of P4. We conclude that such trials could be ethical under certain strict conditions, but only if other potential sources of funding have first (...) been explored or are unavailable. (shrink)

Procedures for the selection of subjects for participation in randomized clinical trials--usually formalized as eligibility criteria in the study protocol--have both scientific and ethical implications. In this thesis, I undertake an examination of eligibility criteria at three stages in the genesis and dissemination of medical knowledge: clinical trial protocol, interpretation by investigators, and reporting of study results.In the first chapter, ethical issues in subject selection are reviewed and the main study questions are presented. In the second chapter, the results (...) of an examination of eligibility criteria in two sets of clinical trials, one sponsored by the NSABP, the other sponsored by POG, covering a twenty-year time span are presented. The POG trials had far fewer eligibility criteria than the NSABP studies, suggesting that large numbers of criteria may not be necessary for high quality research. In the third chapter, the impact of subjective eligibility criteria on enrollment and investigator uncertainty is explored. Subjective criteria were associated with more variable enrollment decisions and greater uncertainty. Such criteria represent a threat to the validity, conduct and interpretation of trials and, therefore, should only be included when carefully justified. The fourth chapter examines the accuracy of the reporting of eligibility criteria in sets of corresponding study protocol, methods paper, journal article, and Clinical Alert. Important information is lost at each step in the dissemination of study results. Unnecessary criteria ought to be dropped at a trial's inception; all other criteria must be reported faithfully. The fifth chapter attempts to provide a comprehensive philosophical account of just selection procedures for clinical research using the political philosophy of Michael Walzer. The sixth, and last, chapter, discusses explanatory and pragmatic approaches to clinical trial design, overlapping scientific and ethical concerns related to eligibility criteria, and questions for further study. (shrink)

Poor people predominate as a subgroup of those who take part in healthy volunteer research. They are subjected to minimised but unknown risks and unpleasant burdens so that the safety of new medicines can be evaluated. This is prima facie unfair especially given that the poor are often unable to access expensive medicines. Although participants in this kind of research often do receive compensation for their time, these payments are usually capped at a very low level. This paper defends a (...) version of a reimbursement model for the payment of research subjects. This model is practical, would benefit those without an income who take part in research, and would make it possible for those in regular work to take part in phase 1 research. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:A Philosophy of Belonging: Persons, Politics, Cosmos by James GreenawayThomas W. HolmanGREENAWAY, James. A Philosophy of Belonging: Persons, Politics, Cosmos. Notre Dame, Ind.: University of Notre Dame Press, 2023. xii + 326 pp. Cloth, $125.00; paper, $50.00“Belonging” is a common theme in contemporary political discourse, but it has not yet garnered much sustained attention in terms of its philosophical significance. James Greenaway’s new book aims to address this (...) issue by offering an original and penetrating exploration into the philosophical meaning of this difficult and laden term. At the heart of his approach lies the concept of the metaxy. As explained in Plato’s Symposium and expanded by Eric Voegelin, it is a state of being-in-tension between two static states or “poles,” which can represent wisdom and ignorance, need and plenty, transcendence and immanence, eternity and time, and so forth. This becomes the foundation for Greenaway’s “hermeneutic of belonging,” which consists of two forces: “existence-from” and “existence-toward.” Existence-toward is a sort of intentionality, a consciousness of “someone or something with whom I am experiencing some kind of an affinity.” It is the “where” or “with whom” I desire to be. Existence-from is an awareness [End Page 717] of the other that a person carries within him- or herself: persons, communities, places, times that are “so significant that I cannot be who I am without them.” Greenaway argues that belonging in the abstract hinges on the metaxic tension between these two poles, variously conceived depending on the context.The second section of the book examines the different contexts in which existence-from and existence-toward play out within each person: between oneself, other persons, and the cosmos. These constitute the various aspects of what Greenaway calls “presence.” Belonging on this level means each person participates “in the grand, continual emergence of reality in all of its variety.” Presence to myself, to others, and to the cosmos as a whole reflects the metaxic tension of the hermeneutic of belonging.In the final section, Greenaway turns to explaining how belonging works in community. He begins by differentiating between the communion, or “bond and order” of a community, and communitas, the “shoulder-to-shoulder stance” that permeates political existence. Communion is a manifestation of the aforementioned hermeneutic of belonging within and among persons and the cosmos. It is the more fundamental principle of community that reflects the primordial intersubjectivity of Buber’s I–Thou: In some sense, each person is or must be involved in or available (in the sense of Gabriel Marcel’s disponibilité) to the other. Without some sort of grounding in communion, communitas becomes impossible. By contrast, communitas is the jostling, back-and-forth movement associated with the practical discernment and attainment of common political goods that Greenaway conceives, with St. Augustine, as objects of common love. These are sought out, argued about, and even fought over in everyday political life, which is marked by a shared commitment to achieving the goals associated with common political goods. The communitas is centered in the tension of belonging between the more fundamental recognition of each person as a bearer of meaning in the cosmos and the everyday business of collectively discerning and implementing the common good.But communion carries a further meaning. In addition to the more fundamental respect for myself and all others in the community as bearers of presence, it is also an awareness of all possible transcendent perfections of the community as a whole. Greenaway calls this second sense “sacramentality.” Yet this mysterious perfection is not necessarily for the here-and-now. It is, rather, another example of the hermeneutic of belonging where transcendent principles intersect with temporal reality. Thus, every community is sealed with seeming contradictions that, far from being irresolvable paradoxes, illustrate its belonging-in-tension alongside mystery. An example of one such paradox is the ideal of universal humanity: we are aware of the claims placed on us by our shared universal humanity, but we are also necessarily situated within a particular place or country or community. The idea of a universal brotherhood of man reflects one way in which transcendent perfection [End Page... (shrink)

To participate in health research, there is a need for well-administered informed consent. Understanding of informed consent, especially in international health research, is influenced by the participants' understanding of information and the meaning attached to the information communicated to them regarding the purpose and procedure of the research. Incorrect information and the power differential between researcher and participants may lead to participants becoming victims of harmful research procedures. Meningitis epidemics in Kano in early 1996 led to a response from drug (...) companies, especially Pfizer, as well as humanitarian workers from Médecins Sans Frontiers, which resulted in an unethical trial. Pfizer's drug trial during the epidemics has left a lasting controversy, which has yet to be resolved. This paper examines the key issues surrounding the controversy, discusses the context of informed decision-making, the ethical issues and implications of the incident, and concludes with some recommendations. Relevant texts, journals, Internet materials, newspaper articles and documentary materials on the conduct of the Pfizer's Trovan trial have been consulted. Four types of action (act intuitively, act rationally, act ignorantly, and act contextually – based on information provided) are identified as possible options for decision making. Participants most likely acted in ignorance due to poor understanding of the information contained in the verbal informed consent administered, thereby raising ethical issues. It is concluded that health research ethics committees have an important role to play nationally and locally in overseeing research, and in avoiding future occurrences. (shrink)

Background Compensating participants of biomedical research is a common practice. However, its proximity with ethical concerns of coercion, undue influence, and exploitation, demand that participant compensation be regulated. The objective of this paper is to discuss the current regulations for compensation of research participants in Malawi and how they can be improved in relation to ethical concerns of coercion, undue influence, and exploitation. Main text In Malawi, national regulations recommend that research subjects be compensated with a stipend of US$10 per (...) study visit. However, no guidance is provided on how this figure was determined and how it should be implemented. While necessary to prevent exploitation, the stipend may expose the very poor to undue influence. The stipend may also raise the cost of doing research disadvantaging local researchers and may have implications on studies where income stipend is the intervention under investigation. We recommend that development and implementation of guidelines of this importance involve interested parties such as the research community and patient groups. Conclusion Compensating human research subjects is important but can also act as a barrier to voluntary participation and good research efforts. Deliberate measures need to be put in place to ensure fair compensation of research participants, avoid their exploitation and level the field for locally funded research. (shrink)

Recent guidelines from the US National Institutes of Health (NIH) mandate the inclusion of adequate numbers of women in clinical trials. Ought such standards to apply internationally? Walzer's theory of justice is brought to bear on the problem, the first use of the theory in research ethics, and it argues for broad application of the principle of adequate representation. A number of practical conclusions for research ethics committees (RECs) are outlined. Eligibility criteria in clinical trials ought to be justified by (...) trial designers. Research ethics committees ought to question criteria that seem to exclude unnecessarily women from research participation. The issue of adequate representation should be construed broadly, so as to include consideration of the representation of the elderly, persons with HIV, mental illness and substance abuse disorders in clinical research. (shrink)

BackgroundAn increasing number of studies utilize intracranial electrophysiology in human subjects to advance basic neuroscience knowledge. However, the use of neurosurgical patients as human research subjects raises important ethical considerations, particularly regarding informed consent and undue influence, as well as subjects’ motivations for participation. Yet a thorough empirical examination of these issues in a participant population has been lacking. The present study therefore aimed to empirically investigate ethical concerns regarding informed consent and voluntariness in Parkinson’s disease patients undergoing deep (...) brain stimulator (DBS) placement who participated in an intraoperative neuroscience study.MethodsTwo semi-structured 30-minute interviews were conducted preoperatively and postoperatively via telephone. Interviews assessed participants’ motivations for participation in the parent intraoperative study, recall of information presented during the informed consent process, and participants’ postoperative reflections on the research study.ResultsTwenty-two participants (mean age = 60.9) completed preoperative interviews at a mean of 7.8 days following informed consent and a mean of 5.2 days prior to DBS surgery. Twenty participants completed postoperative interviews at a mean of 5 weeks following surgery. All participants cited altruism or advancing medical science as “very important” or “important” in their decision to participate in the study. Only 22.7% (n = 5) correctly recalled one of the two risks of the study. Correct recall of other aspects of the informed consent was poor (36.4% for study purpose; 50.0% for study protocol; 36.4% for study benefits). All correctly understood that the study would not confer a direct therapeutic benefit to them.ConclusionEven though research coordinators were properly trained and the informed consent was administered according to protocol, participants demonstrated poor retention of study information. While intraoperative studies that aim to advance neuroscience knowledge represent a unique opportunity to gain fundamental scientific knowledge, improved standards for the informed consent process can help facilitate their ethical implementation. (shrink)

Upshot: Conversational conferences are difficult to design in a way that avoids the consequences that arise when participants are not experienced with or fully value the conversational mode of interaction. So, the designers of such conferences must experiment with ways to build a culture, use a structure, and facilitate participation that might mitigate some of these consequences. The potential of the experimental conference designed in the light of second-order cybernetics lies, in part, in the prospect of identifying and acquiring (...) the conversational abilities and appreciations necessary to support a participative-dialogic society. (shrink)

The practice of paying prisoners to for their participation in research has long been debated, and the controversy is reflected in the differing policies in the U.S. prison systems. Empirical study of financial payments to inmates who enroll in research has focused on whether this practice is coercive. In this study, we examined whether monetary incentives have the potential to be unduly influential among fifty HIV‐positive prisoners. The majority of prisoners surveyed believed that inmates should receive some compensation for (...) their involvement in research and disagreed with statements suggesting that the offer of payment constitutes undue influence. However, a sense of potentially being susceptible to undue influence was significantly higher among participants who had spent a longer time in prison and had less education. Overall, our findings suggest that most prisoners feel that they would be able to make a decision about research enrollment that is not solely based on an offer of monetary payment. (shrink)

Most people know precious little about the risks and benefits of participating in a clinical trial--a medical research study involving some innovative treatment for a medical problem. Yet millions of people each year participate anyway. Patients at Risk explains the reality: that our current system intentionally hides much of the information people need to make the right choice about whether to participate. Witness the following scenarios: -Hundreds of patients with colon cancer undergo a new form of keyhole surgery at leading (...) cancer centersnever -Tens of thousands of women at high risk of developing breast cancer are asked to participate in a major research study. They are told about the option of having both breasts surgically removed but not told about the option of taking a standard osteoporosis pill that might cut the risk of getting breast cancer by one-half or more. Patients at Risk written by two nationally prominent experts, is the first book to reveal the secrets that many in the research establishment have fought long and hard to keep from patients. It shows why options not commonly knownincluding getting a new treatment outside of a research studycan often be the best choice. It explains how patients can make good decisions even if there is only limited information about a treatments effect. And it does this through the eye-opening stories of what is happening daily to thousands of people. Day after day, we are learning how little we know about what really works. Headlines regularly announce that a previously unquestioned treatmenthormone replacement therapy, drugs such as Vioxx or Celebrexmay now be much riskier than we thought. The latest book in a surge of recent books criticizing the medical establishment (but the first to look at clinical trials specifically), Patients at Risk helps to empower patients to survive in a world of medical uncertainty, and makes positive recommendations for systemic reform. (shrink)

Mary-Elaine Swanson has done an invaluable service for this and subsequent generations by resurrecting awareness and presenting an accurate knowledge of John Locke and his reasoning through an uncensored view of his life, writings, and incalculable influence on America. This book will help Americans understand the importance of Locke's thinking for American constitutionalism today. You will learn the real meaning of the "law of nature" as it was embraced in Colonial America, and the separation of church and state embraced in (...) the Constitution. The Founding Fathers looked to Locke as the source of many of their ideas. Thomas Jefferson considered Locke as one of the three greatest men that ever lived. Locke's contributions to American Liberty can clearly be seen interwoven in our colonial Declarations of Rights, paraphrased in our Declaration of Independence, and incorporated into our Constitution and Bill of Rights. The Declaration is born of the extensively studied and widely taught Treatises On Civil Government by John Locke. There Locke reasoned the very purpose of forming civil government is the protection of property, and that "life, liberty, and property (pursuit of happiness)" are not three separate rights but intrinsically one great and inalienable right he called "property"--which begins with the life of the individual, then his liberty which is essential to his productivity, followed by the right to enjoy the fruits of his labors without fear that the government will confiscate his property. These inalienable rights are from God and legitimate government has no authority to take them away but is chartered in fact to preserve and protect liberty. (shrink)

In many regions around the world, those at highest risk for acquiring HIV are young adults and adolescents. Young men who have sex with men in the USA are the group at greatest risk for HIV acquisition, particularly if they are part of a racial or ethnic minority group.1 Adolescent girls and young women have the highest incidence rates of any demographic subgroup in sub-Saharan Africa.2 To reverse the global AIDS pandemic’s toll on these high-risk groups, it is important to (...) deploy the most effective HIV prevention tools to young MSM in the USA, to adolescent girls and young women in sub-Saharan Africa, and to any other adolescents and young adults at high risk for HIV as products are proven to be safe and efficacious. Although prevention interventions with proven efficacy, such as oral pre-exposure prophylaxis, are available,3–8 they have not been sufficient to stem the tide and an expanded prevention toolkit is urgently needed to serve these populations. The field of HIV prevention continues to identify promising leads in the development of new biomedical prevention products, either delivering antiviral drug topically or systemically. The dapivirine ring has been shown to provide modest protection and is currently being tested in open label studies while injectable cabotegravir is being tested in a large efficacy trial for preventing HIV acquisition. Advances in the field of HIV prevention mean that scientists and regulators must plan for how they will bring prevention tools to populations at high risk for HIV as they conduct efficacy and effectiveness trials. For instance, safety data from younger age groups can also be used in combination with efficacy data from adult studies, where appropriate, as bridging studies to expand labelling to younger ages. If these …. (shrink)

The study investigates effects of the implementation of a law authorizing educational leave in Germany on individual participation in adult learning and education (ALE). In 2015, the federal state of Baden-Württemberg introduced the so-calledBildungszeitgesetz, legitimating an exemption for eligible employees of up to 5 days per year with continued payment of salary. Explaining participation in ALE is a central subject of educational research at national and international level. Current theoretical assumptions of rational choice and empirical findings of educational (...) and socio-statistical research suggest that within the general population, individuals’ availability of time affects the decision to participate and therefore lastly determines participation in ALE. However, current academia mainly discusses time as either a prerequisite for learning activities or as an observable outcome of participation and not as an explanatory factor. Furthermore, since recent studies remain on a descriptive level regarding influences of time on participation in ALE, no causal effects of the availability of time on participation are estimated. Hence, our study addresses this research gap by investigating effects of educational policy interventions such as theBildungszeitgesetzon participation in ALE. Policy interventions are ideally suited to examine the significance of time resources for participation, as the implementation of theBildungszeitgesetzprovides a specific timeframe for employees to participate in ALE outside of their working time. Drawing on data from the German National Educational Panel Study, we employ a difference-in-differences estimation strategy with propensity score matching and instrumental variable to identify the direct causal effect of the implementation of theBildungszeitgesetzon participation in ALE (N= 709). This combination toward causal inference controls for observed and unobserved baseline differences as well as heterogeneous treatment effects. The results reveal a non-significant but heterogeneous treatment effect of the implementation of theBildungszeitgesetzon individual participation in ALE. Contrary to our theoretical assumptions derived from rational choice approaches, we cannot confirm the hypothesis that the availability of time resources due to the implementation of theBildungszeitgesetzcauses a positive effect on participation in ALE. Furthermore, the results reveal that the implementation causes decreasing participation rates for younger adults, women and significantly for migrants. (shrink)

Research ethics committees should ensure that there has been a direct enquiry into research participants' moral and spiritual beliefs so as to ensure that volunteers are not inadvertently being led into doing things that might contravene their beliefs.

Young men who have sex with men younger than 18 years are often excluded from HIV prevention research in Thailand due to cultural attitudes toward youth sexuality, social stigma, and difficulties obtaining guardian permission. Culturally sensitive focus group discussions conducted with parents and YMSM in Bangkok, Thailand, identified barriers and facilitators related to minors’ participation in HIV prevention research. Although gender and class differences emerged, mothers and fathers were generally accepting of research to reduce HIV risk but not in (...) favor of waiver. Youth’s positive attitude toward parental permission was tempered by concerns about harms posed by disclosing same-sex attraction through permission forms. (shrink)

This unique volume takes readers behind the scenes for an "insider/outsider" view of education policymaking in action. Two state-level case studies of social studies curriculum reform and textbook policy illustrate how curriculum decision making becomes an arena in which battles are fought over national values and priorities. Written by a New York education professor and a California journalist, the text offers a rare blend of academic and journalistic voices. The "great speckled bird" is the authors' counter-symbol to the bald (...) eagle--a metaphor representing the racial-ethnic-cultural diversity that has characterized the U.S. since its beginnings and the multicultural reality of American society today. The text breaks new ground by focusing on the intersections of national debates and education policymaking. It situates the case studies within historical and contemporary cultural contexts--with particular attention to questions of power and knowledge control and how influence is exercised. By juxtaposing the contrasting cases of California and New York, the authors illustrate commonalities and differences in education policymaking goals and processes. By sharing stories of participants at and behind the scenes, policymaking comes alive rather than appearing to result from impersonal "forces" or "factors.". (shrink)

The article is focused on one of the first biggest armed conflicts between Japan and Soviet Union, battle of lake Khasan, which took place in July, 31 - August, 11 1938. The author analyses the battle of lake Khasan from the perspective of Japanese troops, which draw some conclusions from the conflict. The author considers them as the ‘lessons that Japan learned‘. In particular, the merits and drawbacks of the Japanese army’s actions were analyzed. Drawbacks include problems with supplies and (...) equipment for army, command’s uncoordinated action resulted in disability of Japanese aviation to participate in that armed conflict. Among the merits, strong spirit of the Japanese troops and their capacity to seize the initiative in battle can be named. The other merits were use of the different tactics to destroy enemy’s weapons in the rear of the battlefield, heroism of the sappers, who fought face-to-face against tanks. On the whole, the findings of the Japanese military coincided with an information taken from G. S. Lyushkov, who flew to Japan trying to escape Stalin’s Great Purge and who gave a lot of valuable information regarding the Soviet army to Japan. It should be noted that, on the one hand, the Russian historical science looks at the battle of lake Khasan as a victory of the USSR, on the other hand, in Japan historians are not inclined to believe that this armed conflict ended up with Japan’s defeat. It is believed that the USSR won primarily through the excellence in human resources and well-equipped troops, as well as due to the imperial decree on the prohibition of attacks. (shrink)