BackgroundHuntington’s disease has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive. Little is known about the perspectives of HD patients on their AED.AimTo gain insight into patients’ views on and attitudes towards their AED, and changes over time.MethodsA longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients who either had an AED or (...) were thinking about drawing it up participated in this study.ResultsWe identified two themes that characterize patients’ perspectives on their AEDs: general character of the AED; uncertainty around their AED. Ad The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED.ConclusionHD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care. (shrink)

Background Psychiatric electroceutical interventions (PEIs) use electrical or magnetic stimulation to treat mental disorders and may raise different ethical concerns than other therapies such as medications or talk therapy. Yet little is known about stakeholders’ perceptions of, and ethical concerns related to, these interventions. We aimed to better understand the ethical concerns of a variety of stakeholder groups (patients with depression, caregivers of patients, members of the public, and psychiatrists) regarding four PEIs: electroconvulsive therapy (ECT), repetitive transcranial magnetic stimulation (rTMS), (...) deep brain stimulation (DBS), and adaptive brain implants (ABI).Methods We conducted a national survey of these four stakeholder groups, using an embedded video vignette experiment depicting a patient with treatment-resistant depression and her psychiatrist discussing the possibility of treatment with one of the four PEIs.Results Participants’ ethical concerns varied by stakeholder group, by PEI, and by the interaction of the two. The three non-clinician groups tended to have similar ethical concerns, but to differ from psychiatrists. Similar concerns were raised with regard to the two implantable technologies, DBS and ABI. Overall, there was relatively little concern about the involuntary use of PEIs, though some expressed concern about the adequacy of information provided during the consent process. There was also significant concern that patients may not receive helpful therapies.Conclusions To our knowledge, this is the first national survey that includes multiple stakeholder groups and multiple PEI modalities. A better understanding of the ethical concerns of stakeholders can help to shape clinical practice and health care policy regarding PEIs. (shrink)

This paper argues that professionals who make boundary-related decisions should be guided by relationship-based practice. In our roles as service users and professionals, drawing from our lived experiences of professional relationships, we argue we need to move away from distance-based practice. This includes understanding the boundary stories and narratives that exist for all of us – including the people we support, other professionals, as well as the organisations and systems within which we work. When we are dealing with professional boundary (...) issues, we should centre relationship-building skills that are central to many other aspects of our work. Skills that foster relationships at all levels – between professionals, service users, and services – need to be revalued. Our final recommendation is to create, develop, and foster safer spaces within and outside of organisations, as well as inter-professionally, for the discussion and exploration of boundary-related issues and practice. We are interested in hearing from those with experiences of being marginalised by boundaries so that they can inform a reshaping of our collective ideas around boundary related practices. To foster relationship-based practices in organisations, we have outlined several recommendations here; however, we recognize that these do not go far enough, and that collective action is needed to inform systemic change. (shrink)

Live donor kidney transplantation is the best treatment option for most patients with late-stage chronic kidney disease; however, the rate of living kidney donation has declined in the United States. A consensus conference was held June 5-6, 2014 to identify best practices and knowledge gaps pertaining to live donor kidney transplantation and living kidney donation. Transplant professionals, patients, and other key stakeholders discussed processes for educating transplant candidates and potential living donors about living kidney donation; efficiencies in the living donor (...) evaluation process; disparities in living donation; and financial and systemic barriers to living donation. We summarize the consensus recommendations for best practices in these educational and clinical domains, future research priorities, and possible public policy initiatives to remove barriers to living kidney donation. (shrink)

This paper seeks to advance ethical practice in business and integrate ethics with management curricula. It focuses on the ethical dimensions of incompany research conducted by human resource practitioners who are part time students on a postgraduate research degree award (M.Sc. in HRM). These dual roles of academic researcher in HRM and HR practitioner can become blurred and present particular ethical considerations. Beyond ethical perspectives of HRM, the paper investigates the ethics of in-company research in terms of conceptual and operational (...) factors. The main conclusion is that ethical guidelines need to be developed for M.Sc. in HRM students. Draft guidelines are offered as the basis for development. (shrink)

In this article, we present results from a literature review of intrinsic, instrumental, and relational values of nature conducted for the Intergovernmental Science-Policy Platform on Biodiversity and Ecosystem Services, as part of the Methodological Assessment of the Diverse Values and Valuations of Nature. We identify the most frequently recurring meanings in the heterogeneous use of different value types and their association with worldviews and other key concepts. From frequent uses, we determine a core meaning for each value type, which is (...) sufficiently inclusive to serve as an umbrella over different understandings in the literature and specific enough to help highlight its difference from the other types of values. Finally, we discuss convergences, overlapping areas, and fuzzy boundaries between different value types to facilitate dialogue, reduce misunderstandings, and improve the methods for valuation of nature's contributions to people, including ecosystem services, to inform policy and direct future research. © 2023 The Author(s). Published by Oxford University Press on behalf of the American Institute of Biological Sciences. (shrink)

Initial responses to questionnaires used to assess participants' understanding of informed consent for malaria vaccine trials conducted in the United States and Mali were tallied. Total scores were analyzed by age, sex, literacy (if known), and location. Ninety-two percent (92%) of answers by United States participants and 85% of answers by Malian participants were correct. Questions more likely to be answered incorrectly in Mali related to risk, and to the type of vaccine. For adult participants, independent predictors of higher scores (...) were younger age and female sex in the United States, and male sex in Mali. Scores in the United States were higher than in Mali (P = 0.005). Despite this difference participants at both sites were well informed overall. Although interpretation must be qualified because questionnaires were not intended as research tools and were not standardized among sites, these results do not support concerns about systematic low understanding among research participants in developing versus developed countries. (shrink)

Johanna Knapstein,1 Daniel Grimm,1 Marcus A Wörns,1 Peter R Galle,1 Hauke Lang,2 Tim Zimmermann111st Department of Internal Medicine, Johannes Gutenberg-University, Mainz, Germany; 2Department of General, Visceral and Transplantation Surgery, Johannes Gutenberg-University, Mainz, GermanyIntroduction: Hepatitis C virus reinfection occurs universally after liver transplantation, with accelerated cirrhosis rates of up to 30% within 5 years after liver transplantation. Dual antiviral therapy with pegylated interferon-2a and ribavirin only reaches sustained virological response rates of ~30% after liver transplantation. With the approval of viral NS3/4A (...) protease inhibitors telaprevir, boceprevir, and simeprevir and the NS5B polymerase inhibitor sofosbuvir, combination therapy offers new therapeutic options for HCV-infected patients, resulting in considerably higher sustained virological response rates in the nontransplant setting. Case presentation: We report three cases of TVR-based triple antiviral therapy in HCV genotype 1 reinfected patients after liver transplantation, of whom a 57-year-old Caucasian female and a 43-year-old Caucasian male were therapy naïve, and a 49-year-old Caucasian male patient was pretreated ineffectively. After 4 weeks of therapy, viral load decreased one to three log10 and became negative in weeks 6 to 8 in the therapy naïve patients. The pretreated patient showed a negative viral load in week 4. TVR was administered over 12 weeks, 750 mg thrice daily. Doses of immunosuppression with cyclosporine were reduced four to six fold. Initial peg-IFN and RBV doses ranged from 135–180 µg/week and 800–1,200 mg/day, according to the patient's body weight. Doses of peg-IFN and RBV were adapted to 90–135 µg/week and 400–800 mg/day after 2 to 12 weeks of protease inhibitor therapy. Dual therapy was continued for 36 weeks with total treatment duration of 48 weeks in the therapy naïve patients leading to a sustained virological response 12 weeks after the end of therapy. In the pretreated patient a breakthrough was detected in week 24 and therapy was discontinued. Overall, antiviral therapy was well tolerated. Side effects included dysgeusia and anemia leading to erythropoietin application and blood transfusions. Conclusion: This case series emphasizes that triple therapy with TVR is an efficient treatment for therapy naïve HCV genotype 1 reinfected patients after liver transplantation. But therapeutic options for pretreated patients require improvement. Keyword: cyclosporine, interferon, ribavirin, hepatitis C, protease inhibitor. (shrink)

Aim: Patients with advanced cancer need information about end-of-life treatment options in order to make informed decisions. Clinicians vary in the frequency with which they initiate these discussions.Patients and methods: As part of a long-term longitudinal study, patients with an expected 2-year survival of less than 50% who had advanced gastrointestinal or lung cancer or amyotrophic lateral sclerosis were interviewed. Each patient’s medical record was reviewed at enrollment and at 3 months for evidence of the discussion of patient wishes concerning (...) ventilator support, artificial nutrition and hydration , resuscitation and hospice care. A Kaplan–Meier analysis was also performed and 2-year survival calculated.Results: 60 cancer and 32 ALS patients were enrolled. ALS patients were more likely than cancer patients to have evidence of discussion about their wishes for ventilator support , ANH , DNR and hospice care . At 6 months, 91% of ALS patients were alive compared with 62% of cancer patients; at 2 years, 63% of ALS patients were alive compared with 23% of cancer patients .Conclusions: Cancer patients were less likely than ALS patients to have had documented advanced care planning discussions despite worse survival. This may reflect perceptions that ALS has a more predictable course, that advanced cancer has a greater number of treatment options, or differing views about hope. Nevertheless, cancer patients may be less adequately prepared for end-of-life decision-making. (shrink)

This article presents a novel full-reference image quality assessment algorithm by depicting the sub-band characteristics in the wavelet domain. The proposed image quality assessment method is based on energy estimation in the wavelet-transformed image. Image QA is achieved by applying a multilevel wavelet decomposition on both the original and the enhanced image. Next, the wavelet energy and vector are computed to obtain the percentage of the energy that corresponds to the approximation and the details, respectively. Further, the approximate and detailed (...) energy levels of both the original and the enhanced images are compared to formulate an image quality assessment. Numerous experiments are conducted on a dozen of image enhancement algorithms. The results presented show that the image with poor contrast in the foreground than the background has continuous regular coefficient values. The probability density function for such an image has a relatively lower WE and skewness compared with the background. The proposed scheme not only evaluates the global information of an image but also estimates the fine, detailed changes in an enhanced image. Thus, the proposed metric serves as an objective and effective FR criterion for color image QA. The experimental results presented confirm that the proposed WE metric is an efficient and useful metric for evaluating the quality of the color image enhancement. (shrink)

A number of authors have drawn attention to the contributions to geology of Robert Hooke, and it has been pointed out that in several ways his ideas were more advanced than those of Steno, who is sometimes taken to be the founder of geology as a scientific discipline. Moreover, it has been argued that in a number of instances Hooke should receive the credit for ideas which are usually believed to have originated in the work of James Hutton. This recognition (...) of the significance of Hooke's work is regarded by the present writer as being well founded. But, by contrast, the relationship between Hooke's geological ideas and his views on the proper methods for conducting scientific enquiries has been largely overlooked, and his views on the methodology of science, as revealed in his Posthumous works, have received little discussion. Moreover, on one of the few occasions on which they were discussed, by William Whewell, they were belittled. Whewell regarded Hooke's methodological contribution as merely ‘an attempt to adapt the Novum organon to the age which succeeded its publication’, 5 and he implied that the ‘same imperfections’ were to be found in the writings of both Hooke and Bacon. The influence of Bacon is, to be sure, most obvious in Hooke's general philosophy. Nevertheless, it will be argued that Hooke had a much clearer idea than did Bacon of the importance of so-called ‘hypothetico-deductive’ methods in science, and that in many ways his methodological views represent a significant advance on those of Bacon. (shrink)

Clinical biobanks processing data of participants in the European Union fall under the scope of the General Data Protection Regulation, which among others includes requirements for consent. These requirements are further specified by the Article 29 Working Party —an EU advisory body currently known as the European Data Protection Board. Unfortunately, their guidance is cause for some confusion. While the GDPR allows participants to give broad consent for research when specific research purposes are still unknown, the WP29 guidelines suggest that (...) additional consent for specific uses should be obtained in addition to broad consent when this becomes applicable. This discrepancy elicits the question whether clinical biobanks can fail the requirement of consent if they obtain broad consent, but not a specific consent for each biomedical study. We analysed this discrepancy within the framework of contextual integrity, in order to describe the context-relative informational norms that govern information flows in clinical biobanks. However, our analysis demonstrates that there is no uniform set of norms that can be applied to all clinical biobanks. As such, neither the GDPR nor the WP29 guidance can act as a “one size fits all” approach to all clinical biobanks. Rather, differences between clinical biobanks—especially regarding the scientific aims and patient populations—make the case for context-relative norms that determine the appropriate type of consent. (shrink)

Alzheimer's disease is characterized by plaques of amyloid-beta peptide, cleaved from amyloid-beta protein precursor . Our hypothesis is that lifespan profiles of AD-associated mRNA and protein levels in monkeys would differ from mice and that differential lifespan expression profiles would be useful to understand human AD pathogenesis. We compared profiles of AbetaPP mRNA, AbetaPP protein, and Abeta levels in rodents and primates. We also tracked a transcriptional regulator of the AbetaPP gene, specificity protein 1 , and the beta amyloid precursor (...) cleaving enzyme . In mice, AbetaPP and SP1 mRNA and their protein products were elevated late in life; Abeta levels declined in old age. In monkeys, SP1, AbetaPP, and BACE1 mRNA declined in old age, while protein products and Abeta levels rose. Proteolytic processing in both species did not match production of Abeta. In primates, AbetaPP and SP1 mRNA levels coordinate, but an inverse relationship exists with corresponding protein products as well as Abeta levels. Comparison of human DNA and mRNA sequences to monkey and mouse counterparts revealed structural features that may explain differences in transcriptional and translational processing. These findings are important for selecting appropriate models for AD and other age-related diseases. (shrink)

A detailed account is given of the development of the Archaean Controversy in Caernarvonshire and Anglesey. Sedgwick had found no base for his Cambrian in North Wales, but had intimated that some of the unfossiliferous rocks of the Lleyn Peninsula and Anglesey might be older than his Cambrian. He also described two ‘ribs’ of igneous rock: one running from Caernarvon to Bangor; the other inland, parallel to the first and crossing the Llanberis Pass at Llyn Padarn. The early Surveyors supposed (...) that these ‘ribs’ had altered the surrounding rocks, and the resulting ‘Altered Cambrian’ could be traced across the Menai Strait to Anglesey, where it formed the various metamorphic rocks of that island. This view was challenged by the usual coalition of ‘amateurs’ with attempts being made to recognize a sequence of Archaean rocks in North Wales similar to that in Pembrokeshire. However, vigorous debate occurred amongst the ‘Archaean’ geologists themselves, especially about a rock at Twt Hill, Caernarvon, and about a claimed unconformity at the base of the Cambrian in the Llanberis Pass, perhaps adjacent to the Llyn Padarn ‘rib’. Vigorous debate took place about the location of the claimed Llanberis unconformity, but the ‘Archaeans’ were united in regarding the metamorphic rocks of Anglesey as Precambrian. Eventually, the greywackes of Anglesey, and around Bangor and Caernarvon, were identified as Ordovician, not Cambrian. Very detailed map-work in Anglesey was carried out privately by Edward Greenly, and his results were published by the Survey in the form of a map and a high-quality Memoir. Greenly utilized for Anglesey tectonic ideas derived from his earlier fieldwork in the Scottish Highlands, so that although his mapping and stratigraphical divisions have proved to be of permanent value it is believed that his structures for Anglesey were mistaken and his stratigraphic sequence inverted. The Survey eventually abandoned its earlier model of Anglesey without too much difficulty; and the igneous ‘rib’ of Llyn Padarn is now construed as an ignimbrite. However, a definite base for the Cambrian has still not been found in Caernarvonshire, and the stratigraphical evidence for the Precambrian age of the Anglesey rocks remains incomplete. The study reveals the great difficulty experienced by early geologists when working in unfossiliferous rocks, the evidence from included fragments proving particularly uncertain. The paper also examines further the community of nineteenth-century British geologists, with their various factions and competing interests. (shrink)

The volume presents essays on the philosophical explanation of the relationship between body and soul in antiquity from the Presocratics to Galen. The title of the volume alludes to a phrase found in Plato, Aristotle and Plotinus, referring to aspects of living behaviour involving both body and soul, and is a commonplace in ancient philosophy, dealt with in very different ways by different authors.

This chapter highlighted some salient trends in pediatric ethicsEthics, pediatric from different parts of the globe. It is interesting to note that although diverse, there are many similarities between ethical challenges in pediatrics in different parts of the world.

Introduction Currently, The nature and scope of Clinical Ethics Protocols in Madrid are not well understood.Objectives The main objective is to describe the features of ‘guideline/recommendation’ type CEPs that have been or are being developed by existing Clinical Ethics Committees in Madrid. Secondary objectives include characterisation of those CECs that have been the most prolific in reference to CEP creation and implementation and identification of any trends in future CEP development.Methods We collected CEPs produced and in process by CECs accredited (...) in the public hospitals in Madrid, Spain, from 1996 to 2008.Results CECs developed 30 CEPs, with 10 more in process. The most common topic is refusal of treatment . If CEPs addressing terminal illness, Do-Not-Resuscitate orders and advance directives are placed into a separate ‘ethical problems at the end of life’ category, this CEP subject emerges as the most common . There is a relationship between the age of the CEC and the development of CEPs . CECs now seem to be more likely to engage in CEP development.Conclusions The CECs in Madrid, Spain, have developed a significant number of CEPs and there is a trend towards continued development. The most frequent topics are ethical problems at the end of life and refusal of treatment by the patient. (shrink)

In list-method directed forgetting, reexposure to forgotten List 1 items has been shown to reduce directed forgetting. proposed that reexposure to a few List 1 items only during a direct test of memory reinstates the entire List 1 episode. In the present experiments, part-list reexposure in the context of indirect as well as direct memory tests reduced directed forgetting. Directed forgetting was reduced when 50% or more of the items were reexposed, and was intact when only 25% were reexposed. Furthermore, (...) part-list reexposure appeared to reinstate only reexposed items-not the entire List 1 episode. (shrink)

Early versions of satellite and radiosonde datasets suggested that the tropical surface had warmed more than the troposphere, while climate models consistently showed tropospheric amplification of surface warming in response to human-caused increases in greenhouse gases. We revisit such comparisons here using new observational estimates of surface and tropospheric temperature changes. We find that there is no longer a serious discrepancy between modeled and observed trends in the tropics. Our results contradict a recent claim that all simulated temperature trends in (...) the tropical troposphere are inconsistent with observations. This claim was based on the use of older radiosonde and satellite datasets and on two methodological errors: the neglect of observational trend uncertainties introduced by interannual climate variability and application of an inappropriate statistical “consistency test”.This emerging reconciliation of models and observations has two primary explanations. First, because of changes in the treatment of buoy and satellite information, new surface temperature datasets yield slightly reduced tropical warming relative to earlier versions. Second, recently developed satellite and radiosonde datasets now show larger warming of the tropical lower troposphere. In the case of a new satellite dataset from remote sensing systems, enhancedRSS warming is due to an improved procedure of adjusting for inter-satellite biases. When the RSS-derived tropospheric temperature trend is compared with four different observed estimates of surface temperature change, the surface warming is invariably amplified in the tropical troposphere, consistent with model results. Even if we use data from a second satellite dataset with smaller tropospheric warming than in remote sensing systems RSS, observed tropical lapse rates are not significantly different from those in all model simulations.Our results contradict a recent claim that all simulated temperature trends in the tropical troposphere and in tropical lapse rates are inconsistent with observations. This claim was based on the use of older radiosonde and satellite datasets and on two methodological errors: the neglect of observational trend uncertainties introduced by interannual climate variability and application of an inappropriate statistical “consistency test”. (shrink)