The opinion of Mr. Justice Francis of the English High Court which denied the parents of Charlie Gard, who had been born with an extremely rare mutation of a genetic disease, the right to take their child to the United States for a proposed experimental treatment occasioned world wide attention including that of the Pope, President Trump, and the US Congress. The case raise anew a debate as old as the foundation of Western medicine on who should decide and (...) on what standard when there is a conflict between a family and the treating physicians over a possible treatment. This paper will explore the different approaches of the British and American courts on the issue and the various proposals from that of John Rawls in his A Theory of Justice to a processed-based approach for resolving such disputes. As carefully crafted as the opinion of Mr Justice Nicholas Francis in the Gard case proved to be, it left commentators unsatisfied. A widespread criticism, captured in an article by Michael Dougherty in The National Review was for the state to ‘get out of the way of the parents trying to act in the best interests of the child’.1 Although he conceded the parents could be adding to the suffering of the child by taking Charlie to America for an experimental therapy and agreed that such a choice ‘may be the wrong decision,’ in Dougherty’s view, it should still be ‘their decision’. Dougherty’s stand was the popular response to the question of ‘Who should decide?’ It fails, however, to propose any rationale for the decision. It provided no norms, no standards and no guidelines for the parents. Their motive could equally well be indifference to the suffering of the child as concern for his well-being. Furthermore, even good, loving parents may make …. (shrink)

Several recently published books quote the British astronomer Arthur Stanley Eddington as having said that “religion first became possible for a reasonable scientific man about the year 1927.” In this essay it is shown that these words have been taken out of context and are not representative of Eddington’s views on the relation between science and religion.

:Empirical work has shown that patients and physicians have markedly divergent understandings of treatability statements in the context of serious illness. Patients often understand treatability statements as conveying good news for prognosis and quality of life. In contrast, physicians often do not intend treatability statements to convey improvement in prognosis or quality of life, but merely that a treatment is available. Similarly, patients often understand treatability statements as conveying encouragement to hope and pursue further treatment, though this may not be (...) intended by physicians. This radical divergence in understandings may lead to severe miscommunication. This paper seeks to better understand this divergence through linguistic theory—in particular, H.P. Grice’s notion of conversational implicature. This theoretical approach reveals three levels of meaning of treatability statements: the literal meaning, the physician’s intended meaning, and the patient’s received meaning. The divergence between the physician’s intended meaning and the patient’s received meaning can be understood to arise from the lack of shared experience between physicians and patients, and the differing assumptions that each party makes about conversations. This divergence in meaning raises new and largely unidentified challenges to informed consent and shared decision making in the context of serious illness, which indicates a need for further empirical research in this area. (shrink)

This paper addresses a number of important issues regarding the ethical practices and recent behaviour of large Australian firms in nine industries. These issues include whether firms have a written code of ethics, whether firms have a forum for the discussion of ethics, whether managers consider that their firm's activities have an environmental impact and whether there are any statistical relationships between the size, industry class, ownership, international involvement and location of the firm and its ethical management practices. These questions (...) are examined by using data collected from a sample of 136 large firms operating in Australia. (shrink)

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be (...) associated with individual ethics in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care. (shrink)

This article presents a set of moral arguments regarding the selective abortion of fetuses on the basis of prenatal screening for late onset genetic diseases only, and for Huntington's Disease* in particular. After discussion of human suffering, human perfection and the distinctive features of the lives of people confronting late onset genetic disease, the author concludes that selective abortion is difficult to justify ethically, although it must remain a matter of personal choice.

As we aggressively pursue research to cure and prevent Alzheimer’s disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research recruits and others. These challenges are the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects’ death; the creation of cohorts of (...) ’study ready' volunteers, many of whom will be competent to consent at the beginning of the process, but move into cognitive impairment later; reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; the use of biomarkers and predictive tests that describe risk rather than certainty, and that can threaten participants’ welfare if the information is obtained by insurance companies or long-term care providers; the use of study partners that creates unique risks of harm to the relationship of subject and study partner. We need greater attention, at all levels, to these complex ethical issues. Work on these issues should be included in research plans, from the federal to the local, and should be supported through NIH in the same way that it supported work on the ethical, legal and social implications of genetic research. (shrink)

Parkinson's Disease (PD) is a long-term degenerative disorder of the central nervous system that mainly affects the motor system. The symptoms generally come on slowly over time. Early in the disease, the most obvious are shaking, rigidity, slowness of movement, and difficulty with walking. Doctors do not know what causes it and finds difficulty in early diagnosing the presence of Parkinson’s disease. An artificial neural network system with back propagation algorithm is presented in this paper for helping (...) doctors in identifying PD. Previous research with regards to predict the presence of the PD has shown accuracy rates up to 93% [1]; however, accuracy of prediction for small classes is reduced. The proposed design of the neural network system causes a significant increase of robustness. It is also has shown that networks recognition rates reached 100%. (shrink)

BACKGROUND: Hallucinations and delusions that complicate Parkinson’s disease could lead to nursing home placement and are linked to increased mortality. Cognitive impairments are typically associated with the presence of hallucinations but there are no data regarding whether such a relationship exists with delusions. OBJECTIVE: We hypothesized that hallucinations would be associated with executive and visuospatial disturbance. An exploratory examination of cognitive correlates of delusions was also completed to address the question of whether they differ from hallucinations. METHODS: 144 PD (...) subjects completed a neuropsychological battery to assess cognition and the SAPS to examine psychosis. Correlational analyses assessed associations between hallucinations and delusions with cognitive domains. RESULTS: 48 subjects reported psychotic symptoms: 25 experienced hallucinations without delusions, 23 had symptoms dominated by delusions. Severity and/or number of hallucination subtypes were significantly correlated with lower scores in language, memory, attention, executive functioning, and visuospatial ability. Correlations with delusions were non-significant. Tests of differences in the size of the correlations between groups revealed a significant relationship between language and visuospatial performance with hallucinations. CONCLUSIONS: Cognitive correlates of hallucinations and delusions appear to be different in PD, suggesting distinct pathogenic mechanisms and possibly anatomical substrates. Hence, delusions may not share the same associations with dementia as hallucinations. Since this is a new finding, further studies will be needed to confirm our results. (shrink)

Americans who are afraid of living for many years with Alzheimer's might seek a way to end their lives early, when their dementia has just entered the moderate phase. There is no legal process for doing so. In this paper I argue that advance directives, in particular, are not a legal solution for those who prefer to die rather than suffer years of dementia. The problem is that an advance directive only works to hasten death when there is a life-threatening (...) illness for which one can refuse treatment; more often than not, Alzheimer's kills the self long before it kills the body. (shrink)

Ten years after the Human Genome Project’s completion the life sciences stand in a moment of uncertainty, transition, and contestation. The postgenomic era has seen rapid shifts in research methodology, funding, scientific labor, and disciplinary structures. Postgenomics is transforming our understanding of disease and health, our environment, and the categories of race, class, and gender. At the same time, the gene retains its centrality and power in biological and popular discourse. The contributors to Postgenomics analyze these ruptures and continuities (...) and place them in historical, social, and political context. Postgenomics, they argue, forces a rethinking of the genome itself, and opens new territory for conversations between the social sciences, humanities, and life sciences. Contributors. Russ Altman, Rachel A. Ankeny, Catherine Bliss, John Dupré, Michael Fortun, Evelyn Fox Keller, Sabina Leonelli, Adrian Mackenzie, Margot Moinester, Aaron Panofsky, Sarah S. Richardson, Sara Shostak, Hallam Stevens. (shrink)

A physician and spokesman for the French Ideologues, Pierre-JeanGeorges Cabanis (1757-1808) stands at the crossroads of several influential developments in modern culture--Enlightenment optimism about human perfectibility, the clinical method in medicine, and the formation and adaptation of liberal social ideals in the French Revolution. This first major study of Cabanis in English traces the influences of these developments on his thought and career. Originally published in 1980. The Princeton Legacy Library uses the latest print-on-demand technology to again make available previously (...) out-of-print books from the distinguished backlist of Princeton University Press. These editions preserve the original texts of these important books while presenting them in durable paperback and hardcover editions. The goal of the Princeton Legacy Library is to vastly increase access to the rich scholarly heritage found in the thousands of books published by Princeton University Press since its founding in 1905. (shrink)

Impairment of the Self has been described in frontal–temporal dementia but little research has been carried out in patients with Alzheimer’s disease. Objective. The aim of this study was to explore changes in the self in patients with AD. Method. Forty-seven patients with mild to moderate AD were examined using a semi-structured scale designed to assess the self-concept along three dimensions, namely, the Material Self, the Social Self and the Spiritual Self. Results. The majority of patients presented impairment of (...) at least one dimension of the Self. When only one dimension was affected, it was always the Social Self. The severity of impairment of the Self was correlated to the impairment of the semantic autobiographical memory and apathy. The Self is impaired in AD and the Social Self dimension appears to be more vulnerable in AD than other dimensions. (shrink)

ABSTRACT The objective of the study was to identify future lawyers’ and physicians’ views on testing children for Huntington’s disease (HD) against parents’ wishes. After receiving general information about HD, patient autonomy and confidentiality, law students and advanced medical students were shown an interview with a mother suffering from HD who is opposed to informing and testing her two children (aged 10 and 16) for HD. Students then filled out questionnaires concerning their agreement with testing. No significant differences were (...) found between medical and law students or between students from different courses concerning the adolescent son. Three quarters of students thought that he should be told about his mother’s disease, and 91% thought the adolescent son should have the opportunity of genetic testing for HD for himself. However, significant differences were found concerning the 10‐year old son, with 44% of law students and 30% of medical students in favour of testing the child for HD. Students raised some important ethical issues in their elective comments. In conclusion, we found highly positive attitudes towards informing a 16‐year old of his mother’s HD and offering to test him. These attitudes were not in tune with guidelines. Students did not consider several practical and ethical issues of genetic testing of children and adolescents. Specific education should ensure that attitudes are based on sufficiently detailed knowledge about all aspects of genetic testing of children to discourage pressures on persons at risk of HD. (shrink)

This study investigates the prevalence of ‘Seeking God's Help’, its relation to time since diagnosis, and its association with Life Satisfaction for all cancer types. This study also investigates Disease-Specific Quality of Life for patients with breast, prostate, and colorectal cancers. Data were obtained from the third wave of the Nord-Trøndelag Health Study of Norway, with 2,086 cancer patients identified by the Cancer Registry of Norway and 6,258 cancer-free controls. Our results indicate a higher prevalence of ‘Seeking God's Help’ (...) after a shorter time since diagnosis among men. No association was observed in multivariate analyses between ‘Seeking God's Help’ and ‘Life Satisfaction’ or ‘Disease-Specific QoL’ in long-term cancer survivors. Longitudinal investigations are needed to elucidate the relationship between the ‘Seeking God's Help’ variable and Life Satisfaction and Disease-Specific QoL among cancer patients in a Norwegian context. (shrink)

This paper develops a general approach to how society should compensate for losses that individuals incur due to public health interventions aimed at controlling the spread of infectious diseases. The paper falls in three parts. The first part provides an initial introduction to the issues and briefly outlines five different kinds of public health interventions that will be used as test cases. They are all directed at individuals and aimed at controlling the spread of infectious diseases (1) isolation, (2) quarantine, (...) (3) recommended voluntary social distancing, (4) changes in health care provision for asymptomatic carriers of multi-resistant microorganisms, and (5) vaccination. The interventions will be briefly described including the various risks, burdens and harms individuals who are subject to these interventions may incur. The second part briefly surveys current compensation mechanisms as far as any exist and argue that even where they exist they are clearly insufficient and do not provide adequate compensation. The third part will then develop a general framework for compensation for losses incurred due to public health interventions in the infectious disease context. This is the major analytical and constructive part of the paper. It first analyses pragmatic and ethical arguments supporting the existence of an obligation on the part of the state to compensate for such losses, and then considers whether this obligation can be defeated by (1) resource considerations, or (2) issues relating to personal responsibility. (shrink)

This study investigates the prevalence of ‘Seeking God’s Help’, its relation to time since diagnosis, and its association with Life Satisfaction for all cancer types. This study also investigates Disease-Specific Quality of Life for patients with breast, prostate, and colorectal cancers. Data were obtained from the third wave of the Nord-Trøndelag Health Study of Norway , with 2,086 cancer patients identified by the Cancer Registry of Norway and 6,258 cancer-free controls. Our results indicate a higher prevalence of ‘Seeking God’s (...) Help’ after a shorter time since diagnosis among men. No association was observed in multivariate analyses between ‘Seeking God’s Help’ and ‘Life Satisfaction’ or ‘Disease-Specific QoL’ in long-term cancer survivors. Longitudinal investigations are needed to elucidate the relationship between the ‘Seeking God’s Help’ variable and Life Satisfaction and Disease-Specific QoL among cancer patients in a Norwegian context. (shrink)

An association between age-related hearing loss and Alzheimer's Disease has been widely reported. However, the nature of this relationship remains poorly understood. Quantification of hearing loss as it relates to AD is imperative for the creation of reliable, hearing-related biomarkers for earlier diagnosis and development of ARHL treatments that may slow the progression of AD. Previous studies that have measured the association between peripheral hearing function and AD have yielded mixed results. Most of these studies have been small and (...) underpowered to reveal an association. Therefore, in the current report, we sought to estimate the degree to which AD patients have impaired hearing by performing a meta-analysis to increase statistical power. We reviewed 248 published studies that quantified peripheral hearing function using pure-tone audiometry for subjects with AD. Six studies, with a combined total of 171 subjects with AD compared to 222 age-matched controls, met inclusion criteria. We found a statistically significant increase in hearing threshold as measured by pure tone audiometry for subjects with AD compared to controls. For a three-frequency pure tone average calculated for air conduction thresholds at 500–1,000–2,000 Hz, an increase of 2.3 decibel hearing level was found in subjects with AD compared to controls. Likewise, for a four-frequency pure tone average calculated at 500–1,000–2,000–4,000, an increase of 4.5 dB HL was measured, and this increase was significantly greater than that seen for 0.5–2 kHz PTA. There was no difference in the average age of the control and AD subjects. These data confirm the presence of poorer hearing ability in AD subjects, provided a quantitative estimate of the magnitude of hearing loss, and suggest that the magnitude of the effect is greater at higher sound frequencies.Systematic Review Registration:https://www.crd.york.ac.uk/prospero/, identifier: CRD42021288280. (shrink)

Deep brain stimulation is a well-established therapy for the motor symptoms of Parkinson’s disease, but there remains an opportunity to improve symptom relief. The temporal pattern of stimulation is a new parameter to consider in DBS therapy, and we compared the effectiveness of Temporally Optimized Patterned Stimulation to standard DBS at reducing the motor symptoms of PD. Twenty-six subjects with DBS for PD received three different patterns of stimulation while on medication and using stimulation parameters optimized for standard DBS. (...) Side effects and motor symptoms were assessed after 30 min of stimulation with each pattern. Subjects experienced similar types of side effects with TOPS and standard DBS, and TOPS were well-tolerated by a majority of the subjects. On average, the most effective TOPS was as effective as standard DBS at reducing the motor symptoms of PD. In some subjects a TOPS pattern was the most effective pattern. Finally, the TOPS pattern with low average frequency was found to be as effective or more effective in about half the subjects while substantially reducing estimated stimulation energy use. TOPS DBS may provide a new programing option to improve DBS therapy for PD by improving symptom reduction and/or increasing energy efficiency. Optimizing stimulation parameters specifically for TOPS DBS may demonstrate further clinical benefit of TOPS DBS in treating the motor symptoms of Parkinson’s disease. (shrink)

The status quo: dogmatism, the biopsychosocial model, and alternatives -- What there is: of mind and brain -- How we know: understanding the mind -- What is scientific method? -- Reading Karl Jaspers's General Psychopathology -- What is scientific method in psychiatry? -- Darwin's dangerous method: the essentialist fallacy -- What we value: the ethics of psychiatry -- Desire and self: Hellenistic and Islamic approaches -- On the nature of mental illness: disease or myth? -- Order out of chaos: (...) from insanity to DSM-III to a pluralistic nosology -- A theory of DSM-IV: ideal types -- Dimensions versus categories -- The perils of belief: psychosis -- The slings and arrows of outrageous fortune: depression -- Life's rollercoaster: mania -- Being self-aware: insight -- Calvinism or hedonism? -- Truth and statistics: problems of empirical psychiatry -- A climate of opinion: what remains of psychoanalysis -- Being there: existential psychotherapy -- Beyond eclecticism: teaching psychotherapy in the twenty-first century -- Bridging the biology/psychology dichotomy: the hopes of integrationism -- Why it is hard to be pluralist. (shrink)

Recent scholarship in medical humanities has expressed strong concern over the ability of pharmaceuticals companies to medicalize discomfort and subsequently invent diseases. In this article, I explore the clinical debates over the ontology of the sinus headache as a possible counter-case. Extending Foucault’s concept of principles or rarefaction, this paper documents the efforts of clinicians to resist the pharmaceutically-provided understanding of the sinus headache. In so doing, it offers institutions of rarefaction and rarefactive assemblages as useful heuristics for the exploration (...) of disease legitimization discourse. (shrink)

There is a flood of papers being published on new ways to diagnose Alzheimer disease before it is symptomatic, involving a combination of invasive tests , and pen and paper tests. This changes the landscape with respect to genetic tests for risk of AD, making rational suicide a much more feasible option. Before the availability of these presymptomatic tests, even someone with a high risk of developing AD could not know if and when the disease was approaching. One (...) could lose years of good life by committing suicide too soon, or risk waiting until it was too late and dementia had already sapped one of the ability to form and carry out a plan. One can now put together what one knows about one's risk, with continuing surveillance via these clinical tests, and have a good strategy for planning one's suicide before one becomes demented. This has implications for how these genetic and clinical tests are marketed and deployed, and the language one uses to speak about them. The phrase ‘there is nothing one can do’ is insulting and disrespectful of the planned suicide option, as is the language of the Risk Evaluation and Education for Alzheimer's Disease studies and others that conclude that it is ‘safe’ to tell subjects their risk status for AD. Further, the argument put forward by some researchers that presymptomatic testing should remain within research protocols, and the results not shared with subjects until such time as treatments become available, disrespects the autonomy of people at high risk who consider suicide an option. (shrink)

This article adopts a population-level bioethics approach to analyzing the ethical implications of novel deep-brain stimulation (DBS) technologies. I claim that a microlevel focus on costs and benefits is necessary but insufficient to address the concerns of social justice and health equity that attend the potential utilization of DBS technologies. A macrosocial, population-based analysis notes two ethically significant trends regarding novel health technologies: (1) that they are the prime mover of hyperinflationary health cost trajectories, and (2) that even where they (...) improve overall population health such technologies may expand health inequalities. Such an expansion could exacerbate what Powers and Faden have identified as “densely-woven patterns of disadvantage,” and therein could contravene mandates of social justice. Such concerns of justice and equity are sharpened by the fact that those populations that bear the highest risk of suffering the injuries and illnesses for which DBS technologies might be warranted are among the most disadvantaged groups in American society. Accordingly, ethical analysis of DBS technologies must include an assessment of the evidence suggesting that in their capacity to improve health and compress health inequalities, whole-population approaches that address the upstream factors that shape distributions of neuropsychiatric injuries and illness may be preferable to acute health interventions. However, the article warns against the false-choice fallacy, and notes that whole-population policies and acute care interventions can be simultaneously endorsed. The article concludes by suggesting that the ethical issue of relative priority between these approaches is best framed via a population-level analysis. (shrink)

Yet, the central conviction that informs this volume is that phenomenology provides extraordinary insights into many of the issues that are directly addressed ...

This essay argues that philosophical phenomenology can provide important insights into the patient-physician relationship. In particular, it is noted that the physician and patient encounter the experience of illness from within the context of different "worlds", each "world" providing a horizon of meaning. Such phenomenological notions as focusing, habits of mind, finite provinces of meaning, and relevance are shown to be central to the way these "worlds" are constituted. An eidetic interpretation of illness is proposed. Such an interpretation discloses certain (...) essential characteristics that pertain to the experience of illness, per se , regardless of its manifestation in terms of a particular disease state. It is suggested that, if a shared world of meaning is to be constituted between physician and patient, the eidetic characteristics of illness must be recognized by the physician. Keywords: phenomenology, patient-physician relationship, illness-as-lived, habits of mind, relevance, eidetic CiteULike Connotea Del.icio.us What's this? (shrink)

Mitochondrial replacement techniques, known in the popular media as 'three-parent' or 'three-person' IVFs, have the potential to enable women with mitochondrial diseases to have children who are genetically related to them but without such diseases. In the debate regarding whether MRTs should be made available, an issue that has garnered considerable attention is whether MRTs affect the characteristics of an existing individual or whether they result in the creation of a new individual, given that MRTs involve the genetic manipulation of (...) the germline. In other words, do MRTs affect the qualitative identity or the numerical identity of the resulting child? For instance, a group of panelists on behalf of the UK Human Fertilisation and Embryology Authority has claimed that MRTs affect only the qualitative identity of the resulting child, while the Working Group of the Nuffield Council on Bioethics has argued that MRTs would create a numerically distinct individual. In this article, I shall argue that MRTs do create a new and numerically distinct individual. Since my explanation is different from the NCOB's explanation, I shall also offer reasons why my explanation is preferable to the NCOB's explanation. (shrink)

This essay argues that, while much has been gained by medicine's focus on the spatial aspects of disease in light of developments in modern pathology, too little attention has been given to the temporal experience of illness at the subjective level of the patient. In particular, it is noted that there is a radical distinction between subjective and objective time. Whereas the patient experiences his immediate illness in terms of the ongoing flux of subjective time, the physician conceptualizes the (...) illness as a disease state according to the measurements of objective time. A greater understanding of this disparity in temporal experiencing provides insights into the lived experience of illness and can preclude difficulties in communication between physician and patient. (shrink)

The Inforare project aims to set up a system for the sharing of clinical and familial data, in order to study how genes are related to the severity of sickle cell disease. While the computerisation of clinical records represents a valuable research goal, an ethical framework is necessary to guarantee patients' protection and their rights in this developing field. Issues relating to patient information during the Inforare study were analysed by the steering committee. Several major concerns were discussed by (...) the committee and formalised in the patients' information letter: educating patients to aid the recruitment of family members, rules of confidentiality and the disclosure of aggregate, individual and unexpected research results. This paper presents the main issues addressed. (shrink)

Background: Treating medication-refractory freezing of gait in Parkinson’s disease remains challenging despite several trials reporting improvements in motor symptoms using subthalamic nucleus or globus pallidus internus deep brain stimulation. Pedunculopontine nucleus region DBS has been used for medication-refractory FoG, with mixed findings. FoG, as a paroxysmal phenomenon, provides an ideal framework for the possibility of closed-loop DBS.Methods: In this clinical trial, five subjects with medication-refractory FoG underwent bilateral GPi DBS implantation to address levodopa-responsive PD symptoms with open-loop stimulation. Additionally, (...) PPN DBS leads were implanted for CL-DBS to treat FoG. The primary outcome of the study was a 40% improvement in medication-refractory FoG in 60% of subjects at 6 months when “on” PPN CL-DBS. Secondary outcomes included device feasibility to gauge the recruitment potential of this four-lead DBS approach for a potentially larger clinical trial. Safety was judged based on adverse events and explantation rate.Findings: The feasibility of this approach was demonstrated as we recruited five subjects with both “on” and “off” medication freezing. The safety for this population of patients receiving four DBS leads was suboptimal and associated with a high explantation rate of 40%. The primary clinical outcome in three of the five subjects was achieved at 6 months. However, the group analysis of the primary clinical outcome did not reveal any benefit.Interpretation: This study of a human PPN CL-DBS trial in medication-refractory FoG showed feasibility in recruitment, suboptimal safety, and a heterogeneous clinical effect in FoG outcomes. (shrink)

A number of prominent bioethicists such as Mike Parker, Anneke Lucassen, and Bartha Maria Knoppers have called for the adoption of a system in which by default, genetic information is shared among family members. In this paper, I suggest that a main reason given in support of this call to share genetic information among family members is the idea that genetic information is essentially familial in nature. Upon examining this ‘familial nature of genetics’ argument, I show that most genetic information (...) are only shared in a weaker way among family members and do not necessarily lead to the actual manifestation of particular diseases. The upshot is that the idea that genetic information is familial in nature does not provide a sufficient ground for why we should move towards a system in which by default, genetic information is shared among family members. (shrink)

Mainstream views of medical research tell us it should be a fact-based, value-free endeavor: what a scientist (or her funding source) wants or cares about should not influence her findings. At the same time, we also sometimes criticize medical research for failing to embody certain values, e.g. when we criticize pharmaceutical companies for largely ignoring the diseases that affect the global poor. This chapter seeks to reconcile these perspectives by distinguishing appropriate from inappropriate influences of values on medical research. It (...) divides this broad question into two narrower ones, the Role Question (at what points in the research process is value influence potentially acceptable?) and the Content Question (when value influence is potentially acceptable, what specific values should researchers use?), and then draws on the philosophical literature on values in science to explore answers to each of them. (shrink)

© 2015 NATCO, The Organization for Transplant Professionals.Despite the known benefits of kidney transplant, less than 30% of the 615 000 patients living with end-stage renal disease in the United States have received a transplant. More than 100 000 people are presently on the transplant waiting list. Although the shortage of kidneys for transplant remains a critical factor in explaining lower transplant rates, another important and modifiable factor is patients' lack of comprehensive education about transplant. The purpose of this (...) article is to provide an overview of known best practices from the broader literature that can be used as an evidence base to design improved education for ESRD patients pursuing a kidney transplant. Best practices in chronic disease education generally reveal that education that is individually tailored, understandable for patients with low health literacy, and culturally competent is most beneficial. Effective education helps patients navigate the complex health care process successfully. Recommendations for how to incorporate these best practices into transplant education design are described. Providing more ESRD patients with transplant education that encompasses these best practices may improve their ability to make informed health care decisions and increase the numbers of patients interested in pursuing transplant. (shrink)

Background: In Switzerland, non-medical right-to-die organisations such as Exit Deutsche Schweiz and Dignitas offer suicide assistance to members suffering from incurable diseases. Objectives: First, to determine whether differences exist between the members who received assistance in suicide from Exit Deutsche Schweiz and Dignitas. Second, to investigate whether the practices of Exit Deutsche Schweiz have changed since the 1990s. Methods: This study analysed all cases of assisted suicide facilitated by Exit Deutsche Schweiz (E) and Dignitas (D) between 2001 and 2004 and (...) investigated by the University of Zurich’s Institute of Legal Medicine (E: n = 147; D: n = 274, total: 421). Furthermore, data from the Exit Deutsche Schweiz study which investigated all cases of assisted suicide during the period 1990–2000 (n = 149) were compared with the data of the present study. Results: More women than men were assisted in both organisations (D: 64%; E: 65%). Dignitas provided more assistance to non-residents (D: 91%; E: 3%; p = 0.000), younger persons (mean age in years (SD): D: 64.5 (14.1); E: 76.6 (13.3); p = 0.001), and people suffering from fatal diseases such as multiple sclerosis and amyotrophic lateral sclerosis (D: 79%; E: 67%; p = 0.013). Lethal medications were more often taken orally in cases assisted by Dignitas (D: 91%; E: 76%; p = 0.000). The number of women and the proportion of older people suffering from non-fatal diseases among suicides assisted by Exit Deutsche Schweiz has increased since the 1990s (women: 52% to 65%, p = 0.031; mean age in years (SD): 69.3 (17.0) to 76.9 (13.3), p = 0.000), non-fatal diseases: 22% to 34%, p = 0.026). Conclusions: Weariness of life rather than a fatal or hopeless medical condition may be a more common reason for older members of Exit Deutsche Schweiz to commit suicide. The strong over-representation of women in both Exit Deutsche Schweiz and Dignitas suicides is an important phenomenon so far largely overlooked and in need of further study. (shrink)

Background: In Switzerland, non-medical right-to-die organisations such as Exit Deutsche Schweiz and Dignitas offer suicide assistance to members suffering from incurable diseases.Objectives: First, to determine whether differences exist between the members who received assistance in suicide from Exit Deutsche Schweiz and Dignitas. Second, to investigate whether the practices of Exit Deutsche Schweiz have changed since the 1990s.Methods: This study analysed all cases of assisted suicide facilitated by Exit Deutsche Schweiz and Dignitas between 2001 and 2004 and investigated by the University (...) of Zurich’s Institute of Legal Medicine. Furthermore, data from the Exit Deutsche Schweiz study which investigated all cases of assisted suicide during the period 1990–2000 were compared with the data of the present study.Results: More women than men were assisted in both organisations. Dignitas provided more assistance to non-residents, younger persons : D: 64.5 ; E: 76.6 ; p = 0.001), and people suffering from fatal diseases such as multiple sclerosis and amyotrophic lateral sclerosis. Lethal medications were more often taken orally in cases assisted by Dignitas. The number of women and the proportion of older people suffering from non-fatal diseases among suicides assisted by Exit Deutsche Schweiz has increased since the 1990s : 69.3 to 76.9, p = 0.000), non-fatal diseases: 22% to 34%, p = 0.026).Conclusions: Weariness of life rather than a fatal or hopeless medical condition may be a more common reason for older members of Exit Deutsche Schweiz to commit suicide. The strong over-representation of women in both Exit Deutsche Schweiz and Dignitas suicides is an important phenomenon so far largely overlooked and in need of further study. (shrink)

Although many conferences stimulate a great deal of discussion and practical interest at the time, not so many are followed up to try and estimate what, if any, practical results followed the meeting. This the authors of this study have done. (In Britain the 'medical groups' are voluntary groupings of students at medical schools who meet to discuss ethical problems related to their profession). Sixty-five participants (not all of them students) in the conference on iatrogenic disease replied to the (...) questionnaire, and from the answers it was clear that not only the attitudes of those responding had in some cases been changed but in some positive action had resulted, for example, in the matter of prescribing. This analysis may provide an answer to those who criticize conferences as being a waste of time and money, because much more than could be evaluated from the responses to this survey must have affected all the participants. (shrink)