Eye-tracking technology has become a powerful tool for biomedical-related applications due to its simplicity of operation and low requirements on patient language skills. This study aims to use the machine-learning models and deep-learning networks to identify key features of eye movements in Alzheimer's Disease (AD) under specific visual tasks, thereby facilitating computer-aided diagnosis of AD. Firstly, a three-dimensional (3D) visuospatial memory task is designed to provide participants with visual stimuli while their eye-movement data are recorded and used to build (...) an eye-tracking dataset. Then, we propose a novel deep-learning-based model for identifying patients with Alzheimer's Disease (PwAD) and healthy controls (HCs) based on the collected eye-movement data. The proposed model utilizes a nested autoencoder network to extract the eye-movement features from the generated fixation heatmaps and a weight adaptive network layer for the feature fusion, which can preserve as much useful information as possible for the final binary classification. To fully verify the performance of the proposed model, we also design two types of models based on traditional machine-learning and typical deep-learning for comparison. Furthermore, we have also done ablation experiments to verify the effectiveness of each module of the proposed network. Finally, these models are evaluated by four-fold cross-validation on the built eye-tracking dataset. The proposed model shows 85% average accuracy in AD recognition, outperforming machine-learning methods and other typical deep-learning networks. (shrink)

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)

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.

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)

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)

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)

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)

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)

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)

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)

There is no doubt that custard apple diseases are among the important reasons that destroy the Custard Apple plant and its agricultural crops. This leads to obvious damage to these plants and they become inedible. Discovering these diseases is a good step to provide the appropriate and correct treatment. Determining the treatment with high accuracy depends on the method used to correctly diagnose the disease, expert systems can greatly help in avoiding damage to these plants. The expert system correctly (...) diagnoses Custard Apple disease to make it easier for farmers to find the right treatment based on the appropriate diagnosis. Objectives: A specialized syllable language system was established for the diagnosis of Custard Apple plant disease. (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)

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)

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)

This paper explores how the diagnosis of mental disorder may affect the diagnosed subject’s self-concept by supplying an account that emphasizes the influence of autobiographical and social narratives on self-understanding. It focuses primarily on the diagnoses made according to the criteria provided by the Diagnostic Statistical Manual of Mental Disorders (DSM), and suggests that the DSM diagnosis may function as a source of narrative that affects the subject’s self-concept. Engaging in this analysis by appealing to autobiographies and memoirs written by (...) people diagnosed with mental disorder, the paper concludes that a DSM diagnosis is a double-edged sword for self- concept. On the one hand, it sets the subject’s experience in an established classificatory system which can facilitate self-understanding by providing insight into subject’s condition and guiding her personal growth, as well as treatment and recovery. In this sense, the DSM diagnosis may have positive repercussions on self-development. On the other hand, however, given the DSM’s symptom-based approach and its adoption of the Biomedical Disease model, a diagnosis may force the subject to make sense of her condition divorced from other elements in her life that may be affecting her mental- health. It may lead her frame her experience only as an irreversible imbalance. This form of self-understanding may set limits on the subject’s hopes of recovery and may create impediments to her flourishing. (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)

Ravelingien et al1 argue that we should recategorise people in a permanent vegetative state as dead. Although the dilemma they describe is very real, their solution will not work. Other respondents to this paper have advanced several powerful arguments against the attempt to describe patients in a PVS as dead. Fortunately, the original argument contains sufficient resources for developing an alternative solution to this dilemma without having to radically change the current legal or social status of patients in a PVS. (...) In fact, patients in a PVS may be enrolled in xenotransplantation experiments, provided that their prior informed consent has been sought.The motivation for the original paper was to resolve an apparently intractable ethical conflict. On the one hand, there are powerful ethical and medical reasons for proceeding with research into the transplantation of non-human organs into human patients, whereas on the other, there are equally powerful ethical reasons for blocking whole-organ transplant experiments. These reasons are unusual in that special problems with xenotransplantation will block experiments that are permitted in other cases. In particular, the unquantifiable risk of a pandemic triggered by diseases such as porcine endogenous retrovirus crossing the species barrier will either block the research or expose subjects to the risk of indefinite quarantine . The authors also argue that the restrictions placed on transplant recipients and the possibility of long-term and intrusive monitoring, restrictions on sexual contacts and reproduction, and possible confinement represent excessive and ethically unjustifiable burdens. Over time, the recipients may wish to withdraw their consent, but the risks to public health would prevent them from doing so, thereby violating the basic principle that subjects of scientific and medical experiments should be able to revise or withdraw consent . …. (shrink)

John Burdon Sanderson Haldane was a giant among men. He made major contributions to genetics, population biology, and evolutionary theory. He was at once comfortable in mathematics, chemistry, microbiology and animal physiology. But it was his belief in education that led to his preparing his popular essays for publication. In his own words: "Many scientific workers believe that they should confine their publications to learned journals. I think that the public has a right to know what is going on inside (...) the laboratories, for some of which it pays." So begins Haldane's collection of essays, perhaps the most public intellectual communicating science before the writings of Stephen Jay Gould. The first part of the volume emphasizes the important developments in biology and natural science in the first quarter of the century. As such, it provides a benchmark for studies of the next three quarters of the century. In an unusual introduction, Price takes the readers through their paces, discussing the situation then and now in vitamins, oxygen want, disease controls, and the rewards of science as such. This is followed by Haldane's views on society, art, religion and economy as seen through the eyes of a politically alert major scientist. The editor provides readers unfamiliar with Haldane with a carefully rendered chronology of a life that began in 1892 and that spanned much of the present century. Despite ideas on race, class and politics that have seen better times, Haldane was truly exceptional in translating the science of his time into ideas that "everyman" could readily grasp. His predictions on what science would achieve were on target far more often than not. But even his failed predictions are perhaps the most interesting of all. They throw into sharp relief the truly novel and revolutionary developments in science over the past 75 years. J.B.S. Haldane held many positions and received many honors during his lifetime. But for most of the period covered in this volume, he was the William Dunn Reader in Biochemistry at Cambridge University. He simultaneously served as Fellow of New College, in Oxford University's Horticultural Institute. Carl A. Price served until 1999 as professor IIof plant molecular biology in the Waksman Institute of Microbiology at Rutgers, the State University of New Jersey. He also served as the editor of Plant Molecular Biology Reporter from 1983 until 1997. This is the first volume in a new series on the history and theory of science. (shrink)

OBJECTIVES: To measure the preference regarding disclosure of a serious diagnosis, and its determinants, of the Lebanese public. DESIGN AND SETTING: Non-random sample survey of 400 persons interviewed in health care facilities in Beirut in 1995. RESULTS: Forty-two per cent of respondents generally preferred truth not to be disclosed directly to patients. Preference for disclosure was associated with younger age, better education and tendency to rapport-building with physicians. There were no meaningful associations between place of residence (urban/rural), level of religious (...) practice, or religious affiliation, and preference for disclosure. CONCLUSIONS: Under one plausible interpretation, this survey suggests that the expectation for concealment will decrease as the advantage of knowledge in better coping with disease is understood by an increasingly better educated public, and that the Lebanese public will increasingly come to expect direct and full disclosure of serious diagnoses. (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)

We conducted a cross-sectional survey of a random sample of 1943 spouses of home-dwellers with Alzheimer’s disease (AD) to examine the prevalence of court-appointed guardians or financial powers of attorney for persons with AD, related factors and the need for information about these issues among caregiving families. The questionnaire consisted questions on variables of demographic characteristics, disability, symptoms and care needs of the person with dementia, the strain of caregiving, the use of court-appointed legal guardians or powers of attorney, (...) as well as discussions about these issues—and the need for them—with a doctor. The response rate was 77% and the mean ages of those with AD and caregivers were 80.2 and 78.2 years, respectively. The use of legal guardians was rare (4.3%), while the use of financial powers of attorney was more common (37.8%). Only 9.9% of the couples had discussed these issues with their doctor, whereas 47.9% expressed a need for it. The factors associated with the use of these legal arrangements were related to the severity of dementia, including experiencing dementia symptoms for more than 3 years, poor functioning, incontinence and behavioural symptoms. There is a clear need for information on medico-legal issues related to dementia among caregivers of AD patients. If held soon after the diagnosis, such discussions could support the autonomy of these persons in spite of AD and enable them to plan for the future as they wish. (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)

We are printing, by kind permission of the Law Commission, two sections of the report of the Law Commission on injuries to unborn children. This report was the result of a request to the Law Commission by the Lord Chancellor at the time (Lord Hailsham of Saint Marylebone) to advise on `what the nature and extent of civil liability for antenatal injury should be'. The Law Commission followed its usual practice in such circumstances of consulting various bodies and obtaining expert (...) advice on the subject and then embodying the results in a working paper (Working Paper No. 47 - injuries to unborn children) published on 19 January 1973, which preceded their report (Cmnd 5709). Meanwhile a Royal Commission is considering much wider issues of civil liability for injury (including antenatal injury) but the terms of reference for the Law Commission were much narrower and confined to the position of children injured before birth. In the section relating to the present law the report makes it clear that it is probable that liability under the common law already exists. The Scottish Law Commission has also issued a report (Cmnd 5371). They were given different terms of reference and came to somewhat different conclusions. We are printing from this long report the paragraphs discussing the medical background and the summary of recommendations. As will be evident on reading the paragraphs on the medical background to injuries to the unborn child, events are moving very rapidly, particularly in the study of congenital defects and the effects of drugs but the problems of proof present great difficulty. Other causes of injury to the unborn child are better known to the general public: for example, those following the illness, infection and disease of the mother during pregnancy, injury caused in attempted termination of pregnancy and the risks resulting from the mother's condition. The summary of the recommendations sets out very clearly the legal position of the unborn child, as the Law Commission sees it, arising from injury before birth, the final conclusion being that `legislation is desirable'. These extracts from the report, apart from their intrinsic interest, lead on to the paper by Mr Kennedy and Dr Edwards in which they set out their criticisms of it, and provide quick references to the original document. (shrink)

CRISPR/Cas9 is quickly becoming one of the most influential biotechnologies of the last five years. Clinical trials will soon be underway to test whether CRISPR/Cas9 can edit away the genetic mutations that cause sickle cell disease (SCD). This article will present the background of CRISPR/Cas9 gene editing and SCD, highlighting research that supports the application of CRISPR/Cas9 to SCD. While much has been written on why SCD is a good biological candidate for CRISPR/Cas9, less has been written on the (...) ethical implications of including SCD in CRISPR/Cas9 research. This article will argue that there is a strong case in favor of including SCD. Three benefits are achieving distributive justice in research, continuing to repair the negative relationship between patients with SCD and the health‐care system, and benefit‐sharing for those who do not directly participate in CRISPR/Cas9 research. Opponents will argue that SCD is a risky candidate, that researchers will not find willing participants, and that the burden of SCD is low. Of this set of arguments, the first gives pause. However, on balance, the case in favor of including SCD in CRISPR/Cas9 research is stronger than the case against. Ultimately, this article will show that the historic and sociopolitical injustices that impede progress in treating and curing SCD can be alleviated through biotechnology. (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)