The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing p...

How did meat emerge to become such an important feature in Western society? In both popular and academic literatures, biophysical and political-economic factors are often cited as the reason for meat’s preeminent status. In this paper, we perform a comprehensive investigation of these claims by reviewing the available evidence on the political-economic and biophysical features of meat over the long arc of Western history. We specifically focus on nine critical epochs: the Paleolithic, early to late Neolithic, antiquity, ancient Israel and (...) early Christian societies, medieval Europe, early modern Europe, colonial America, the American frontier, and the modern industrial era. We find that except under conditions of environmental scarcity, the meaning and value of meat cannot be attributed to intrinsic biophysical value or to the political-economic actors who materially benefit from it. Rather, meat’s status reflects the myriad cultural contexts in which it is socially constructed in people’s everyday lives, particularly with respect to religious, gender, communal, racial, national, and class identity. By deconstructing the normalized/naturalized materialist assumptions circling around meat consumption, this paper clears a space for a more nuanced appreciation of the role that culture has played in the legitimation of meat, and by extension, the possibility of change. (shrink)

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

In this paper, we explore the perspectives of expert stakeholders about who owns data in a medical information commons and what rights and interests ought to be recognized when developing a governance structure for an MIC. We then examine the legitimacy of these claims based on legal and ethical analysis and explore an alternative framework for thinking about participants' rights and interests in an MIC.

How does perceptual learning take place early in life? Traditionally, researchers have focused on how infants make use of information within displays to organize it, but recently, increasing attention has been paid to the question of how infants perceive objects differently depending upon their recent interactions with the objects. This experiment investigates 10-month-old infants' use of brief prior experiences with objects to visually organize a display consisting of multiple geometrically shaped three-dimensional blocks created for this study. After a brief exposure (...) to a multipart portion of the display, each infant was shown two test events, one of which preserved the unit the infant had seen and the other of which broke that unit. Overall, infants looked longer at the event that broke the unit they had seen prior to testing than the event that preserved that unit, suggesting that infants made use of the brief prior experience to (a) form a cohesive unit of the multipart portion of the display they saw prior to test and (b) segregate this unit from the rest of the test display. This suggests that infants made inferences about novel parts of the test display based on limited exposure to a subset of the test display. Like adults, infants learn features of the three-dimensional world through their experiences in it. (shrink)

White matter tracts are known to be susceptible to injury following concussion. The objective of this study was to determine whether contact play in sport could alter white matter metabolite levels in female varsity athletes independent of changes induced by long-term exercise. Metabolite levels were measured by single voxel proton magnetic resonance spectroscopy in the prefrontal white matter at the beginning and end of season in contact and non-contact varsity athletes. Sedentary women were scanned once, at a time equivalent to (...) the Off-Season time point. Metabolite levels in non-contact athletes did not change over a season of play, or differ from age matched sedentary women except that non-contact athletes had a slightly lower myo-inositol level. The contact athletes had lower levels of myo-inositol and glutamate, and higher levels of glutamine compared to both sedentary women and non-contact athletes. Lower levels of myo-inositol in non-contact athletes compared to sedentary women indicates long-term exercise may alter glial cell profiles in these athletes. The metabolite differences observed between contact and non-contact athletes suggest that non-contact athletes should not be used as controls in studies of concussion in high-impact sports because repetitive impacts from physical contact can alter white matter metabolite level profiles. It is imperative to use athletes engaged in the same contact sport as controls to ensure a matched metabolite profile at baseline. (shrink)

Existing research has examined if undergraduate factors influence chemistry and physics, or physical science, doctoral degree entry and whether variables during PhD programs associate with graduation. Yet research on the transition from bachelor’s degree to doctoral degree entry (i.e., PhD entry in less than 6 months, attainment of a master’s degree prior to doctoral degree entry, or working in a science-related job for more than a year prior to doctoral degree entry) on PhD degree graduation remains scarce. Our study examines (...) the transition from bachelor’s to doctoral degrees to see if experiences therein associate with female PhD graduation, after doctoral degree enrollment. Our logistic regression analysis, of female chemistry and physics doctorates (n = 867), indicated that attainment of a master’s degree did not change the likelihood of graduation, when compared to direct entry into physical science doctoral programs. Meanwhile working in a science-related job for a year or more is associated with a significantly lower likelihood of physical science doctoral graduation when compared to women who entered directly into PhD programs or received a master’s degree prior to enrollment. (shrink)

BackgroundThe Public Health Service Increased Risk designation identified organ donors at increased risk of transmitting hepatitis B, hepatitis C, and human immunodeficiency virus. Despite clear data demonstrating a low absolute risk of disease transmission from these donors, patients are hesitant to consent to receiving organs from these donors. We hypothesize that patients who consent to receiving offers from these donors have decreased time to transplant and decreased waitlist mortality.MethodsWe performed a single-center retrospective review of all-comers waitlisted for liver transplant from (...) 2013 to 2019. The three competing risk events (transplant, death, and removal from transplant list) were analyzed. 1603 patients were included, of which 1244 (77.6%) consented to offers from increased risk donors.ResultsCompared to those who did not consent, those who did had 2.3 times the rate of transplant (SHR 2.29, 95% CI 1.88–2.79, p < 0.0001), with a median time to transplant of 11 months versus 14 months (p < 0.0001), as well as a 44% decrease in the rate of death on the waitlist (SHR 0.56, 95% CI 0.42–0.74, p < 0.0001). All findings remained significant after controlling for the recipient age, race, gender, blood type, and MELD. Of those who did not consent, 63/359 (17.5%) received a transplant, all of which were from standard criteria donors, and of those who did consent, 615/1244 (49.4%) received a transplant, of which 183/615 (29.8%) were from increased risk donors.ConclusionsThe findings of decreased rates of transplantation and increased risk of death on the waiting list by patients who were unwilling to accept risks of viral transmission of 1/300–1/1000 in the worst case scenarios suggests that this consent process may be harmful especially when involving “trigger” words such as HIV. The rigor of the consent process for the use of these organs was recently changed but a broader discussion about informed consent in similar situations is important. (shrink)

In her latest book, The End of Progress, Amy Allen embarks on an ambitious and much-needed project: to decolonize contemporary Frankfurt School Critical Theory. As with all of her books, this is an exceptionally well-written and well-argued book. Allen strives to avoid making assertions without backing them up via close and careful textual reading of the thinkers she engages in her book. In this article, I will state why this book makes a central contribution to contemporary critical theory (in the (...) broader sense), after which I pose a few questions. These questions are not meant to prove that there are any serious problems with her argumentation. Instead, they are meant in the spirit of dialogue and allow her to elaborate her work for her audience. (shrink)

In her latest book, The End of Progress, Amy Allen embarks on an ambitious and much-needed project: to decolonize contemporary Frankfurt School Critical Theory. As with all of her books, this is an exceptionally well-written and well-argued book. Allen strives to avoid making assertions without backing them up via close and careful textual reading of the thinkers she engages in her book. In this article, I will state why this book makes a central contribution to contemporary critical theory (in the (...) broader sense), after which I pose a few questions. These questions are not meant to prove that there are any serious problems with her argumentation. Instead, they are meant in the spirit of dialogue and allow her to elaborate her work for her audience. (shrink)

This study explored pre-service teachers’ (N = 37) perceptions about teaching controversial global and local topics. Additionally, it examined participants’ level of preparedness, motivation and perceived hindrances to teaching controversial issues. To do so, the study used a interpretive phenomenological approach (IPA). Data from written reflections and semi-structured interviews showed 80 percent of participants lacked exposure to college work that examined controversial issues prior to taking Social Studies Methods course. However, after taking the course, participants were able to identify controversial (...) topics, but they still displayed limited critical awareness and conceptualization of teaching controversial issues. Other findings pointed to the benefits of teaching controversial topics in a planned and intentional manner. (shrink)

We are living in an unprecedented era of biomedical revolution. Medicine is remaking humans, and controversy surrounds such topics as abortion, artificial organs, brain circuitry, eugenics, euthanasia, and gene therapy. At the same time, medical advances are posing complex ethical problems for both patients and professionals. The most comprehensive and up-to-date collection of its kind, Case Studies in Biomedical Ethics: Decision-Making, Principles, and Cases explores fundamental ethical questions arising from real situations faced by health professionals, patients, and others. Featuring a (...) wide range of more than 100 case studies drawn from current events, court cases, and physicians' experiences, the book is divided into three parts. Part I presents a basic framework for ethical decision-making in healthcare, covering such issues as separating evaluative questions from questions of fact; distinguishing between ethical and nonethical evaluations; and identifying the source of ethical judgments. Expanding upon this framework, Part II explains the ethical principles: beneficence and nonmaleficence, justice, respect for autonomy, veracity, fidelity, and avoidance of killing. Parts I and II provide students with the background to analyze the ethical dilemmas presented in Part III, which features cases on a broad spectrum of issues including abortion, genetics, mental health, confidentiality, health insurance, experimentation on humans, the right to refuse treatment, and death and dying. Each case is accompanied by the authors' commentary, which guides students in considering the issues. Ideal for undergraduate and graduate courses in biomedical ethics, bioethics, and medical ethics, Case Studies in Biomedical Ethics incorporates opening text boxes in each chapter that cross-reference relevant cases in other chapters. It also includes an appendix of important ethical codes and a glossary of key terms. (shrink)

A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

BackgroundStructured, systematic methods to formulate consensus recommendations, such as the Delphi process or nominal group technique, among others, provide the opportunity to harness the knowledge of experts to support clinical decision making in areas of uncertainty. They are widely used in biomedical research, in particular where disease characteristics or resource limitations mean that high-quality evidence generation is difficult. However, poor reporting of methods used to reach a consensus – for example, not clearly explaining the definition of consensus, or not stating (...) how consensus group panellists were selected – can potentially undermine confidence in this type of research and hinder reproducibility. Our objective is therefore to systematically develop a reporting guideline to help the biomedical research and clinical practice community describe the methods or techniques used to reach consensus in a complete, transparent, and consistent manner.MethodsThe ACCORD project will take place in five stages and follow the EQUATOR Network guidance for the development of reporting guidelines. In Stage 1, a multidisciplinary Steering Committee has been established to lead and coordinate the guideline development process. In Stage 2, a systematic literature review will identify evidence on the quality of the reporting of consensus methodology, to obtain potential items for a reporting checklist. In Stage 3, Delphi methodology will be used to reach consensus regarding the checklist items, first among the Steering Committee, and then among a broader Delphi panel comprising participants with a range of expertise, including patient representatives. In Stage 4, the reporting guideline will be finalised in a consensus meeting, along with the production of an Explanation and Elaboration document. In Stage 5, we plan to publish the reporting guideline and E&E document in open-access journals, supported by presentations at appropriate events. Dissemination of the reporting guideline, including a website linked to social media channels, is crucial for the document to be implemented in practice.DiscussionThe ACCORD reporting guideline will provide a set of minimum items that should be reported about methods used to achieve consensus, including approaches ranging from simple unstructured opinion gatherings to highly structured processes. (shrink)

Making data broadly accessible is essential to creating a medical information commons. Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.

Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.

This article is the lead piece in a special report that presents the results of a bioethical investigation into chimeric research, which involves the insertion of human cells into nonhuman animals and nonhuman animal embryos, including into their brains. Rapid scientific developments in this field may advance knowledge and could lead to new therapies for humans. They also reveal the conceptual, ethical, and procedural limitations of existing ethics guidance for human‐nonhuman chimeric research. Led by bioethics researchers working closely with an (...) interdisciplinary work group, the investigation focused on generating conceptual clarity and identifying improvements to governance approaches, with the goal of helping scholars, funders, scientists, institutional leaders, and oversight bodies (embryonic stem cell research oversight [ESCRO] committees and institutional animal care and use committees [IACUCs]) deliver principled and trustworthy oversight of this area of science. The article, which focuses on human‐nonhuman animal chimeric research that is stem cell based, identifies key ethical issues in and offers ten recommendations regarding the ethics and oversight of this research. Turning from bioethics’ previous focus on human‐centered questions about the ethics of “humanization” and this research's potential impact on concepts like human dignity, this article emphasizes the importance of nonhuman animal welfare concerns in chimeric research and argues for less‐siloed governance and oversight and more‐comprehensive public communication. (shrink)

A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

Bi-directional differences in social communication and behavior can contribute to poor interactions between autistic and non-autistic people, which in turn may reduce social opportunities for autistic adults and contribute to poor outcomes. Historically, interventions to improve social interaction in autism have focused on altering the behaviors of autistic people and have ignored the role of NA people. Recent efforts to improve autism understanding among NA adults via training have resulted in more favorable views toward autistic people, yet it remains unknown (...) whether these benefits extend to real-world interactions between autistic and NA people. The current study explores whether a brief autism acceptance training program can improve social interactions between autistic and NA adults. Thirty-nine NA males were randomly assigned to complete AAT or a no-training control condition, then participated in a 5-min unstructured conversation with an unfamiliar autistic male. Following the conversation, participants rated their perceptions of interaction quality, first impressions of their partner, and their interest in future interactions with their partner. In dyads where the NA individual completed AAT, both the autistic and NA person endorsed greater future interest in hanging out with their partner relative to dyads in which the NA adult did not complete AAT. However, other social interaction outcomes, including ratings of interaction quality and first impressions of autistic partners, largely did not differ between training and no-training conditions, and assessments of the interaction were largely unrelated for autistic and NA partners within dyads. Results also indicated that NA participants, but not autistic participants, demonstrated substantial correspondence between evaluations of their partner and the interaction, suggesting that autistic adults may place less weight on trait judgments when assessing the quality of an interaction. These findings suggest that the brief AAT for NA adults used in this study may increase mutual social interest in real-world interactions between NA and autistic adults, but more systematic changes are likely needed to bridge divides between these individuals. Future work with larger, more diverse samples is recommended to further explore whether interventions targeting NA adults are beneficial for improving autistic experiences within NA social environments. (shrink)

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...) groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers. (shrink)

BackgroundJunior medical doctors have a key role in discussions and decisions about treatment and end-of-life care for people with dementia in hospital. Little is known about junior doctors’ decision-making processes when treating people with dementia who have advance care directives, or the factors that influence their decisions. To describe among junior doctors in relation to two hypothetical vignettes involving patients with dementia: their legal compliance and decision-making process related to treatment decisions; the factors influencing their clinical decision-making; and the factors (...) associated with accurate responses to one hypothetical vignette. MethodA cross-sectional survey of junior doctors, including trainees, interns, registrars and residents, on clinical rotation in five public hospitals located in one Australian state. The anonymous, investigator-developed survey was conducted between August 2018 and June 2019. Two hypothetical vignettes describing patients with dementia presenting to hospital with an ACD and either: bacterial pneumonia; or suspected stroke were presented in the survey. Participants were asked to indicate whether they would commence treatment, given the ACD instructions described in each vignette.ResultsOverall, 116 junior doctors responded. In Vignette 1, 58% of respondents selected the legally compliant option. Participants who chose the legally compliant option perceived ‘following patient wishes’ and ‘legal requirements to follow ACDs’ as equally important reasons for complying with the ACD. The most common reason for not selecting the legally compliant option in Vignette 1 was the ‘ACD is relevant in my decision-making process, but other factors are more relevant’. In Vignette 2, 72% of respondents indicated they would commence treatment and 18% selected they would not commence treatment.. Similar reasons influenced participant decision-making in Vignette 2, a less legally certain scenario.ConclusionsThere are critical gaps in junior doctors’ compliance with the law as it relates to the implementation of ACDs. Despite there being differences in relation to the legal answer and its certainty, clinical and ethical factors guided decision-making over and above the law in both vignettes. More education and training to guide junior doctors’ clinical decision-making and ensure compliance with the law is required. (shrink)

Robert Veatch was a notable and prolific author in a variety of areas in philosophy, health care practice, and policy. However, it is evident by the sheer number of case study in ethics books, eighteen editions of case collections in all, that this approach to teaching ethics in the health sciences was especially important to him. A few of these case study collections he wrote alone, but the majority were written with co-authors from nursing, dentistry, pharmacy, allied health, and medicine, (...) drawing on their respective areas of disciplinary expertise and experience as educators. The aim of this article is to focus on the pedagogy and framework Veatch developed to expose students to the rudiments of philosophical ethics so they could understand the conflicts between values, principles, and ethical theories. Authentic clinical cases, he believed, were a useful way to engage students. Putting the two ideas together, Veatch argued the best method of structuring cases is “bootlegging theory in a topical structure” (Veatch, Robert M., Case analysis in ethics instruction. In: Amy Haddad (ed) Teaching and learning strategies in pharmacy ethics, Creighton University, Omaha, 85–97, 1992). Veatch’s rationale for this carefully planned systematic arrangement between case topics and philosophical ethics content are presented. The influence and input of co-authors from different disciplines are explored regarding case development and commentary content. Finally, the impact of these interdisciplinary case study textbooks on ethics instruction in the health sciences is evaluated. (shrink)

This paper investigates the state of the law in Canada in regards to a public health emergency, and in particular the jurisdictional logic that might come into effect were a public health emergency to occur. Although there has yet to be a national public health emergency in Canada, threats of such crises are likely to arise in the future. It is therefore recognised as necessary to address Canada’s legal preparedness for a public health emergency and evaluate proposed reforms to the (...) legal structure that could facilitate response. This paper contributes to this goal by identifying multiple jurisdictional factors that could inform legal interpretations in a public health emergency. It considers how the legal system and the courts are dealing with public health as a national security issue while taking into account s. 7 of the Canadian Charter. It also looks at the power of the government defined in the Emergencies Act [1985, c. 22] and a proposed legal reform that would make it easier for the government to act unilaterally in a public health emergency. The paper draws on the legal theory of Robert Cover to analyse the hermeneutics of jurisdiction that characterise legal interpretations of public health in Canada, as well as the relationship between jurisdiction and legal violence that these hermeneutics imply. It then develops a case study of the use of medical triage in a public health emergency to explore the possibility of holding the state liable under private law for harm caused to individuals by public health decisions. The paper concludes by suggesting that the state’s public health power can be conceptualised as a form of legal violence and that the courts in Canada should adopt a jurisgenerative approach to legal interpretation in the area of public health. (shrink)

La personnalite de Robert Badinter se lit a travers la diversite de ses centres d'interets et de ses activites. Professeur de droit (sa vocation premiere), il marquera la seconde moitie du XXe siecle par bien des facettes de son action. Il fut l'artisan de progres sensibles accomplis dans la defense de la dignite de la personne humaine et de la victoire que constitua l'abolition de la peine de mort. Il a vecu l'engagement politique, l'exercice du pouvoir, les subtilites du controle (...) de constitutionnalite et l'eclat des debats parlementaires. Il a promu la creation de la Cour penale internationale, a ecrit livres, essais, articles, consultations, une piece de theatre, un livret d'opera. il a participe a nombre de colloques et de conferences. Intellectuel engage dans les debats de son temps, conscience morale aux yeux de ses contemporains, c'est avant tout un homme de droit et de justice, habite par la prescription biblique: - La justice tu chercheras ardemment -. Les contributions ici reunies emanent de profils et d'horizons divers: universitaires, juges, avocats, collaborateurs, amis, compagnons d'action, ont tenu a temoigner de leur attachement et leur estime. De la Faculte de Besancon aux lieux du pouvoir politique, il laissera, dans les lois comme dans la memoire de ceux qui l'ont approche, la trace d'un infatigable combat, rigoureux, altier, pour la justice et le droit. ". (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Human Genome ProjectSharon J. Durfy (bio) and Amy E. Grotevant (bio)In recent years, scientists throughout the world have embarked upon a long-term biological investigation that promises to revolutionize the decisions people make about their lives and lifestyles, the way doctors practice medicine, how scientists study biology, and the way we think of ourselves as individuals and as a species. It is called the Human Genome Project, and its (...) ultimate goal is to map and determine the chemical sequence of the three billion nucleotide base pairs that comprise the human genome. The feat is expected to take about fifteen years (see General Surveys).These three billion base pairs include an estimated 50,000 to 100,000 genes. The rest of the genome—perhaps 95 percent of it—is nongenic sequences with unknown function, sometimes called "junk." Determining the order and organization of all this material has been likened to tearing six volumes of the Encyclopaedia Brittanica into pieces, then trying to put it all back together to read the information (Surveys: Hall 1990). The effort could be well worth it, many scientists say, because it is expected to yield major insights into many common and complex diseases, including cancer, cardiovascular disease, and Alzheimer's disease (Debate: Dulbecco 1986; Koshland 1989).The Human Genome Project is not without controversy, however (Debate: Davis 1990; Leder 1990; Rechsteiner 1990). Many scientists fear that funding for it will be diverted from other areas of research, rather than obtained from new funding sources. This has enlivened the debate about the relative value of "big" versus "small" science. Also, the value of undertaking a complete sequencing of the genome has been questioned, especially given the high proportion of non-genic sequences.Advocates of the effort converted many critics by making two alterations in the original plan. Plans were included to simultaneously determine the nucleotide sequence of the genomes of other organisms; this provides comparisons and points of reference for the human sequence (U.S.: NIH/DOE 1990). Second, in response to concerns about the high cost of developing technology to sequence the whole [End Page 347] genome, the focus moved from large-scale sequencing to mapping the genome, which would hasten the search for disease genes (U.S.: NIH/DOE 1990).The ideal map would be both genetic, locating DNA markers, or signposts, at closely spaced intervals along the chromosomes, and physical, indicating the exact distance between these markers (Map: McKusick 1991). Since 1973, Human Gene Mapping workshops (HGM) have been held at least every two years to locate, compare, and compile genetic markers. This information is published and is accessible through Genome Database at Johns Hopkins University (McKusick 1991). The most recent Human Genome Mapping workshop was held in August 1991, at which the Human Genome Organization (HUGO) began to assume increased responsibility for coordination of the international mapping effort (Surveys: Maddox 1991).Historical Background of the United States EffortThe first serious discussions about sequencing the entire human genome occurred at a workshop at the University of California at Santa Cruz in 1985 (U.S.: Sinsheimer 1989). A second workshop, organized by the U.S. Department of Energy (DOE) and held in March 1986, addressed the feasibility of an organized program (U.S.: DOE 1986). Shortly thereafter, DOE instituted its own genome project (U.S.: DOE 1987). Reports in early 1988 from both the National Research Council (NRC) of the National Academy of Sciences (NAS) and Congress' Office of Technology Assessment (OTA) (U.S.: NRC 1988; OTA 1988) served as catalysts, and in fiscal year 1988, the U.S. Congress officially launched the Human Genome Project by appropriating funds to both the Department of Energy and the National Institutes of Health (NIH).To avoid potential congressional "meddling" (U.S.: Roberts 1988), NIH and DOE drafted a memorandum of understanding for interagency coordination in October 1988 (U.S.: NIH/DOE 1990). The agencies then created both separate and joint committees, and working groups to administer the project. NIH established the Office of Human Genome Research in 1988 (directed by James D. Watson) to plan and coordinate NIH genome activities. That office has evolved into the National Center for Human Genome Research (NCHGR... (shrink)

arratives, fictional and factual, commonly raise in their audience suspense. A narrative lays out over time a sequence of events; and because the events of the narrative are not completely told all at once, questions arise for the audience which will be answered only later in the narrative’s telling. Will the transfigured panther-woman pounce on her rival as she walks home alone at night, hearing strange noises around her? Will Sam and Annie ever make their date at the top of (...) the Empire State Building? And the most classic question of all, Who dunnit?, or as it appears in its post-modern form, Who will do it? ‘This is the story of a murder. It hasn’t happened yet. But it will,’ Martin Amis writes at the beginning of London Fields. ‘I know the murderer, I know the murderee,’ and we’re soon told that the murderee is to be Nicola Six.1 But who will kill her? And why? (shrink)

In the case of Mrs. Amy Sidaway, the House of Lords has rejected the “American” legal doctrine of informed consent, which is based on patients' rights, in favor of a standard based on the obligations of the reasonable physician. The British National Health Service, with centralized planning, prospective funding, and limited resources, is unlikely to provide a safe harbor for a doctrine based on individual choice in health care.

BackgroundAcute myocardial infarction (AMI) research is challenging as it requires enrollment of acutely ill patients. Patients are generally in a suboptimal state for providing informed consent. Patients’ understanding to verbal assents have not been previously examined in AMI research. Patients Acceptance and Comprehension to Written and Verbal Consent (PAC–VC) compared patients’ understanding and attitudes to verbal and written consents in AMI RCTs.MethodsPAC–VC recruited patients from 3 AMI trials using both verbal N = 12 and written N = 6 consents. We (...) compared patients’ understanding using two survey questionnaires. The first questionnaire used open-ended questions with multiple choice answers. The second questionnaire used a 5-point Likert scale to measure patients understanding and attitudes to the consent process. Overall answers average scores were categorized into three groups: Adequate understanding (71–100) %, Partial understanding (41–70)% and Inadequate understanding (0–40)%.ResultsResponses showed patients with verbal assent had adequate understanding to most components of informed consent, close to those of written consent. Most patients did not read written information entirely and believed that it is not important to make a final decision. Patients favoured to have written information be part of the consent but not necessarily presented during the initial consent process. Patients felt less pressured in the verbal assent arm than those of written consent.ConclusionPatients had adequate understanding to most components of verbal assent and comparable to those of written consent. Utilizing verbal assents in the acute care setting should be further assessed in larger trials. (shrink)

Il serait étonnant qu’en un temps où toutes les traditions, les valeurs, les mœurs sont sujettes à contestation et à mutation, la médecine échappât à la conjoncture. Ce n’est pas, bien entendu, son principe qui est en cause. La crise qu’elle traverse concerne ses méthodes, ses pouvoirs, son rôle social, son mode d’exercice. Elle perd en art ce qu’elle gagne en science. Et, d’autre part, elle se trouve arbitre des intérêts désormais contraires de l’individu et de la société. Les médecins (...) ressentent les effets de cet état de choses. Et l’opinion se montre sévère à leur égard, tantôt à juste titre, tantôt non. L’auteur, chirurgien en retraite, qui a profondément aimé et connu sa profession pendant cinquante ans, s’adresse ici, à travers un de ses amis en « mal de médecine », au public tout entier. D’une impartialité exemplaire, il met (par habitude) le doigt sur toutes les plaies, n’excepte rien, ne ménage personne. Ainsi ces pages, sans prétendre apporter une solution globale, jettent une vive lumière sur une question d’une importance quotidienne pour tous, et invitent, grâce à plus de clarté, les deux partis à se mieux comprendre et à s’entr’aider. (shrink)

Evoquant au passage l'axolotl, ce poisson mexicain qui nous ressemble, comme le jaguar de la brousse brésilienne ou le loup des contes enfantins, discutant avec Platon, Albert Einstein ou... Michael Jackson, se prenant à l'occasion pour Sherlock Holmes, le narrateur écrit dix lettres à sa " belle amie". Qui correspondent à autant de moments clés du " voyage" à travers le temps accompli par cette étrange espèce animale qu'on appelle les hommes. Contrairement à l'idée reçue, notre espèce se caractérise non (...) pas par sa supériorité sur le reste de la création mais par sa forme inachevée, sa faiblesse "naturelle" constitutive. Un "manque de nature ", donc, que seule peut compenser la culture, autrement dit les discours et récits comme les sciences et techniques qui permettent à l'être humain d'agir sur le monde pour mieux l'habiter. A moins qu'en voulant construire une " surhumanité " réservée à quelques-uns l'on ne mette en jeu la survie même de l'espèce... Peut-être n'est-il pas trop tard pour non seulement s'indigner mais aussi résister, nous dit Dany-Robert Dufour en conclusion de ce beau texte lisible par tout le monde. A travers lequel il poursuit en philosophe son travail de critique radicale mais constructive du monde contemporain. (shrink)

Trois délires politiques mortifères hantent notre époque. Dans le premier, le délire occidental, la pléonexie (vouloir toujours plus) à l'oeuvre dans le néolibéralisme se transforme en risque de tout perdre (dislocation des subjectivités, déchirure du lien social, épuisement de la planète, destruction des bases mêmes de la vie sur terre). Le second, le délire théo fasciste de l'islamisme djihadiste prétend, contre l'égoïsme érigé en système et la démesure caractérisant l'Occident, restaurer une pureté absolue. Or, quand cette pureté originaire revendiquée se (...) réalise, elle se transforme en souillure et en horreur absolues. Le troisième, le délire identitaire néo-fasciste (qui monte aujourd'hui partout en Europe) se présente comme le seul rempart possible contre les deux premiers. Contre la mondialisation néo-libérale, il prône un retour à la patrie. Non pas une patrie fondée sur un principe universaliste (du type "liberté, égalité, fraternité"), mais une patrie refermée sur elle-même, désignant des boucs émissaires, les étrangers, pour que des acolytes réputés "amis" se regroupent et décrètent contre ces "ennemis" l'"état d'exception". Ces trois délires tendent de plus en plus à former système : on ne sort de l'un que pour entrer dans l'un des deux autres. Puisqu'aucun des garde-fous démocratiques (État, médias et université) ne fonctionne plus, il faut songer à tout refonder à partir des principes de dignité et de commune humanité, également bafoués par ces trois délires. Il se pourrait bien que le travail actuellement fourni par Les Convivialistes puisse fournir les bases de cette reconstruction probablement une des dernières possibles avant la catastrophe annoncée."--Page 4 of cover. (shrink)