ResearchPad - Issues, ethics and legal aspects https://www.researchpad.co Default RSS Feed en-us © 2020 Newgen KnowledgeWorks <![CDATA[Social Patterning of Screening Uptake and the Impact of Facilitating Informed Choices: Psychological and Ethical Analyses]]> https://www.researchpad.co/product?articleinfo=5b7da522463d7e3f1fb49003

Screening for unsuspected disease has both possible benefits and harms for those who participate. Historically the benefits of participation have been emphasized to maximize uptake reflecting a public health approach to policy; currently policy is moving towards an informed choice approach involving giving information about both benefits and harms of participation. However, no research has been conducted to evaluate the impact on health of an informed choice policy. Using psychological models, the first aim of this study was to describe an explanatory framework for variation in screening uptake and to apply this framework to assess the impact of informed choices in screening. The second aim was to evaluate ethically that impact. Data from a general population survey (n = 300) of beliefs and attitudes towards participation in diabetes screening indicated that greater orientation to the present is associated with greater social deprivation and lower expectation of participation in screening. The results inform an explanatory framework of social patterning of screening in which greater orientation to the present focuses attention on the disadvantages of screening, which tend to be immediate, thereby reducing participation. This framework suggests that an informed choice policy, by increasing the salience of possible harms of screening, might reduce uptake of screening more in those who are more deprived and orientated to the present. This possibility gives rise to an apparent dilemma where an ethical decision must be made between greater choice and avoiding health inequality. Philosophical perspectives on choice and inequality are used to point to some of the complexities in assessing whether there really is such a dilemma and if so how it should be resolved. The paper concludes with a discussion of the ethics of paternalism.

]]>
<![CDATA[‘No Time to be Lost!’]]> https://www.researchpad.co/product?articleinfo=5b7d9348463d7e1c9cc87c1a

Severe Traumatic Brain Injury (TBI) remains a major cause of death and disability afflicting mostly young adult males and elderly people, resulting in high economic costs to society. Therapeutic approaches focus on reducing the risk on secondary brain injury. Specific ethical issues pertaining in clinical testing of pharmacological neuroprotective agents in TBI include the emergency nature of the research, the incapacity of the patients to informed consent before inclusion, short therapeutic time windows, and a risk-benefit ratio based on concept that in relation to the severity of the trauma, significant adverse side effects may be acceptable for possible beneficial treatments. Randomized controlled phase III trials investigating the safety and efficacy of agents in TBI with promising benefit, conducted in acute emergency situations with short therapeutic time windows, should allow randomization under deferred consent or waiver of consent. Making progress in knowledge of treatment in acute neurological and other intensive care conditions is only possible if national regulations and legislations allow waiver of consent or deferred consent for clinical trials.

]]>
<![CDATA[Information Rx: Prescribing Good Consumerism and Responsible Citizenship]]> https://www.researchpad.co/product?articleinfo=5b7d1565463d7e31c0e18c67

Recent medical informatics and sociological literature has painted the image of a new type of patient—one that is reflexive and informed, with highly specified information needs and perceptions, as well as highly developed skills and tactics for acquiring information. Patients have been re-named “reflexive consumers.” At the same time, literature about the questionable reliability of web-based information has suggested the need to create both user tools that have pre-selected information and special guidelines for individuals to use to check the individual characteristics of the information they encounter. In this article, we examine suggestions that individuals must be assisted in developing skills for “reflexive consumerism” and what these particular skills should be. Using two types of data (discursive data from websites and promotional items, and supplementary data from interviews and ethnographic observations carried out with those working to sustain these initiatives), we examine how users are directly addressed and discussed. We argue that these initiatives prescribe skills and practices that extend beyond finding and assessing information on the internet and demonstrate that they include ideals of consumerism and citizenship.

]]>
<![CDATA[Infanticide: a reply to Giubilini and Minerva]]> https://www.researchpad.co/product?articleinfo=5acb1407463d7e67d4c52a0f

Alberto Giubilini and Francesco Minerva's recent infanticide proposal is predicated on their personism and actualism. According to these related ideas, human beings achieve their moral status in virtue of the degree to which they are capable of laying value upon their lives or exhibiting certain qualities or being desirable to third-party family members. This article challenges these criteria, suggesting that these and related ideas are rely on arbitrary and discriminatory notions of human moral status. Our propensity to sleep, fall unconscious, pass out and so on, demonstrates that we often exhibit our status as ‘potential persons’ who are not in the condition of attributing any value to their own existence. Our abilities, age and desirability can and do fluctuate. The equal dignity principle, distinguished in turn from both the excesses of vitalism and consequentialism, is analysed and defended in the context of human rights logic and law. The normalisation of non- and involuntary euthanasia, via such emerging practices as the self-styled Groningen Protocol, is considered. Substituted consent to the euthanasia of babies and others is scrutinised and the implications of institutionalising non-voluntary euthanasia in the context of financial, research and political interests are considered. The impact on the medical and legal professions, carers, families and societies, as well as public attitudes more generally, is discussed. It is suggested that eroding the value of human life carries with it significant destructive long-term implications. To elevate some, often short-term, implications while ignoring others demonstrates the irrational nature of the effort to institutionalise euthanasia.

]]>
<![CDATA[INTEGRATION OF MENTAL HEALTH1]]> https://www.researchpad.co/product?articleinfo=5abd1f22463d7e6398006266 ]]> <![CDATA[Client Participation in Moral Case Deliberation: A Precarious Relational Balance]]> https://www.researchpad.co/product?articleinfo=5abd073f463d7e626d314a02

Moral case deliberation (MCD) is a form of clinical ethics support in which the ethicist as facilitator aims at supporting professionals with a structured moral inquiry into their moral issues from practice. Cases often affect clients, however, their inclusion in MCD is not common. Client participation often raises questions concerning conditions for equal collaboration and good dialogue. Despite these questions, there is little empirical research regarding client participation in clinical ethics support in general and in MCD in particular. This article aims at describing the experiences and processes of two MCD groups with client participation in a mental healthcare institution. A responsive evaluation was conducted examining stakeholders’ issues concerning client participation. Findings demonstrate that participation initially creates uneasiness. As routine builds up and client participants meet certain criteria, both clients and professionals start thinking beyond ‘us-them’ distinctions, and become more equal partners in dialogue. Still, sentiments of distrust and feelings of not being safe may reoccur. Client participation in MCD thus requires continuous reflection and alertness on relational dynamics and the quality of and conditions for dialogue. Participation puts the essentials of MCD (i.e., dialogue) to the test. Yet, the methodology and features of MCD offer an appropriate platform to introduce client participation in healthcare institutions.

]]>
<![CDATA[At the borders of medical reasoning: aetiological and ontological challenges of medically unexplained symptoms]]> https://www.researchpad.co/product?articleinfo=5989db3eab0ee8fa60bd5b8a

Medically unexplained symptoms (MUS) remain recalcitrant to the medical profession, proving less suitable for homogenic treatment with respect to their aetiology, taxonomy and diagnosis. While the majority of existing medical research methods are designed for large scale population data and sufficiently homogenous groups, MUS are characterised by their heterogenic and complex nature. As a result, MUS seem to resist medical scrutiny in a way that other conditions do not. This paper approaches the problem of MUS from a philosophical point of view. The aim is to first consider the epistemological problem of MUS in a wider ontological and phenomenological context, particularly in relation to causation. Second, the paper links current medical practice to certain ontological assumptions. Finally, the outlines of an alternative ontology of causation are offered which place characteristic features of MUS, such as genuine complexity, context-sensitivity, holism and medical uniqueness at the centre of any causal set-up, and not only for MUS. This alternative ontology provides a framework in which to better understand complex medical conditions in relation to both their nature and their associated research activity.

]]>
<![CDATA[The phenomenological-existential comprehension of chronic pain: going beyond the standing healthcare models]]> https://www.researchpad.co/product?articleinfo=5989da5fab0ee8fa60b90bdb

A distinguishing characteristic of the biomedical model is its compartmentalized view of man. This way of seeing human beings has its origin in Greek thought; it was stated by Descartes and to this day it still considers humans as beings composed of distinct entities combined into a certain form. Because of this observation, one began to believe that the focus of a health treatment could be exclusively on the affected area of the body, without the need to pay attention to patient’s subjectivity. By seeing pain as a merely sensory response, this model was not capable of encompassing chronic pain, since the latter is a complex process that can occur independently of tissue damage. As of the second half of the twentieth century, when it became impossible to deny the relationship between psyche and soma, the current understanding of chronic pain emerges: that of chronic pain as an individual experience, the result of a sum of physical, psychological, and social factors that, for this reason, cannot be approached separately from the individual who expresses pain. This understanding has allowed a significant improvement in perspective, emphasizing the characteristic of pain as an individual experience. However, the understanding of chronic pain as a sum of factors corresponds to the current way of seeing the process of falling ill, for its conception holds a Cartesian duality and the positivist premise of a single reality. For phenomenology, on the other hand, the individual in his/her unity is more than a simple sum of parts. Phenomenology sees a human being as an intending entity, in which body, mind, and the world are intertwined and constitute each other mutually, thus establishing the human being’s integral functioning. Therefore, a real understanding of the chronic pain process would only be possible from a phenomenological point of view at the experience lived by the individual who expresses and communicates pain.

]]>
<![CDATA[The WHO simulation initiative: improving global health partnerships]]> https://www.researchpad.co/product?articleinfo=5989dacfab0ee8fa60bb5790 ]]> <![CDATA[Book Review of Alternatives Beyond Psychiatry by Peter Stastny and Peter Lehmann (Eds)]]> https://www.researchpad.co/product?articleinfo=5989da0aab0ee8fa60b774ff

Peter Stastny and Peter Lehmann's Alternatives beyond Psychiatry offers a comprehensive and up to date account of the alternatives to mainstream psychiatry that are being developed by service consumers and survivors across the world. As psychiatry moves into a new age less dominated by a biomedical paradigm many of the approaches described in this book may be adopted by mainstream health services. This is a hugely readable and accessible book for professionals and consumers alike.

]]>
<![CDATA[An extrapolation of Foucault&#8217;s Technologies of the Self to effect positive transformation in the intensivist as teacher and mentor]]> https://www.researchpad.co/product?articleinfo=5989da3aab0ee8fa60b8779e

In critical care medicine, teaching and mentoring practices are extremely important in regard to attracting and retaining young trainees and faculty in this important subspecialty that has a scarcity of needed personnel in the USA. To this end, we argue that Foucault’s Technologies of the Self is critical background reading when endeavoring to effect the positive transformation of faculty into effective teachers and mentors.

]]>
<![CDATA[A four-part working bibliography of neuroethics: part 1: overview and reviews &#8211; defining and describing the field and its practices]]> https://www.researchpad.co/product?articleinfo=5989da6dab0ee8fa60b93a28

Background

Neuroethics entails investigations of neurocognitive mechanisms of morality and ethics; and studies and address of the ethical issues spawned by the use of neuroscience and its technologies to investigate cognition, emotion and actions. These two principal emphases, or what have been called “traditions” of neuroethics both mirror traditional bioethical discussions (such as debates about the safety of technological and pharmaceutical advances and ethical implications of new scientific and technological discoveries), and engage discourse about neuroscientific investigations of (proto-moral and moral) cognition, emotions and behaviors, and what such findings may mean for human beliefs and conduct - from the individual to the political levels.

Given the growth, range, and rapid maturation of the field of neuroethics we provide an iterative, four-part document that affords a repository of international papers, books, and chapters that address the field in overview, and present discussion(s) of more particular aspects and topics of neuroethics. This first installment lists reviews and overviews of the discipline, and broad summaries of basic developments and issues of the field.

Methods

To systematically survey the neuroethics literature, searches were performed by accessing 11 databases, 8 additional literature depositories, and 4 individual journal searches using indexing language for National Library of Medicine (NLM) Medical Subject Heading databases. Searches and assurance against overlapping coverage were conducted using the RefWorks citation management program.

Results

Overview, review and reflections upon the history and multicultural perspectives of neuroethics were obtained and relevant listings from international journals, books, and book chapters are provided. Part I will be followed by three installments that will address a): the neuroscience of morality and ethics, including discussions of free will, and personal autonomy; b) “second tradition neuroethics”, to include specific ethical issues in neuroscience; clinical neuroethics; and c) neuroethics education/training; neuroethics and society; neuroethics and law; neuroethics and policy; and international neuroethics.

]]>
<![CDATA[Promoting social responsibility amongst health care users: medical tourists&#8217; perspectives on an information sheet regarding ethical concerns in medical tourism]]> https://www.researchpad.co/product?articleinfo=5989da55ab0ee8fa60b8ed7b

Background

Medical tourists, persons that travel across international borders with the intention to access non-emergency medical care, may not be adequately informed of safety and ethical concerns related to the practice of medical tourism. Researchers indicate that the sources of information frequently used by medical tourists during their decision-making process may be biased and/or lack comprehensive information regarding individual safety and treatment outcomes, as well as potential impacts of the medical tourism industry on third parties. This paper explores the feedback from former Canadian medical tourists regarding the use of an information sheet to address this knowledge gap and raise awareness of the safety and ethical concerns related to medical tourism.

Results

According to feedback provided in interviews with former Canadian medical tourists, the majority of participants responded positively to the information sheet and indicated that this document prompted them to engage in further consideration of these issues. Participants indicated some frustration after reading the information sheet regarding a lack of know-how in terms of learning more about the concerns discussed in the document and changing their decision-making. This frustration was due to participants’ desperation for medical care, a topic which participants frequently discussed regarding ethical concerns related to health care provision.

Conclusions

The overall perceptions of former medical tourists indicate that an information sheet may promote further consideration of ethical concerns of medical tourism. However, given that these interviews were performed with former medical tourists, it remains unknown whether such a document might impact upon the decision-making of prospective medical tourists. Furthermore, participants indicated a need for an additional tool such as a website for continued discussion about these concerns. As such, along with dissemination of the information sheet, future research implications should include the development of a website for ongoing discussion that could contribute to a raised awareness of these concerns and potentially increase social responsibility in the medical tourism industry.

]]>
<![CDATA[The epistemological role of empathy in psychopathological diagnosis: a contemporary reassessment of Karl Jaspers&#8217; account]]> https://www.researchpad.co/product?articleinfo=5989da31ab0ee8fa60b849a2

Introduction

In his classic essay “The phenomenological approach to psychopathology”, Karl Jaspers defended the irreducible reality of the “subjective” mental symptoms and stressed the pivotal role of empathy in their diagnostic assessment. However, Jaspers’ account of the epistemological role of empathy in psychopathological diagnosis was far from clear: whereas at several places Jaspers claimed that empathy provides a direct access to patients’ abnormal mental experiences, at other places he stressed that it did so only indirectly, through a whole battery of their observable clinical indicators. The aim of this paper is to reassess Jaspers’ account of the epistemological role of empathy in psychopathological diagnosis.

Methods

I examine thoroughly Jaspers’ assertions on in the role of empathy in the diagnosis of “subjective” symptoms. Moreover, I explicate briefly the epistemological status of psychopathological diagnostic examination with the aid of the distinction between direct and indirect observation.

Results

Diagnostic assessment of “subjective” mental symptoms involves necessarily indirect psychopathological observation. Jaspers’ ambiguity is traced to his failure to distinguish clearly between direct and indirect psychopathological observation along with his excessive reliance on empathy. Relatedly, Jaspers’ ambiguity is also traced to his conflation of the semantics with the epistemology of psychopathological concepts representing patients’ “subjective” mental symptoms. These results apply also to contemporary phenomenological approaches to psychopathological diagnostic examination which maintain that patients’ abnormal mental experiences are invariably expressed in their overt behavior.

Conclusions

Jaspers was right in stressing that psychopathological concepts of subjective mental symptoms represent patients’ genuine abnormal experiences irreducible to concepts representing their associated behavioral manifestations. Moreover, he was right in stressing the importance of the empathic ‘second person’ approach to patients’ mental experiences. However, he failed to recognize unambiguously that the epistemological access to patients’ mental symptoms, though enormously aided by empathy, remains mainly indirect and thus requires also a ‘third person’ approach to them. Overall then, clinical psychopathological examination requires both a ‘second’ and a ‘third’ person approach, as well as their judicious alternation during the diagnostic interview. Although focused on Jaspers’ essay, my critical analysis is also highly relevant to contemporary psychopathological approaches aiming to overcome the serious limitations of currently prevailing systems of diagnostic criteria of mental disorders.

]]>
<![CDATA[An alternative to current psychiatric classifications: a psychological landscape hypothesis based on an integrative, dynamical and multidimensional approach]]> https://www.researchpad.co/product?articleinfo=5989da03ab0ee8fa60b74bd4

Background

Mental disorders as defined by current classifications are not fully supported by scientific evidence. It is unclear whether main disorders should be broken down into separate categories or disposed along a continuous spectrum. In the near future, new classes of mental disorders could be defined through associations of so-called abnormalities observed at the genetic, molecular and neuronal circuitry levels.

Methods

We propose an alternative hypothesis to these classifications based on an integrative, dynamical and multidimensional approach.

Results

We suggest that observed data collected in the general population can be used to build a psychological landscape. Innovative techniques issued from information processing and system dynamics can prove helpful in this task. Information preserving techniques can reduce the high dimensional data collected and provide an intrinsic map for psychological characteristics or behaviors. Dynamical patterns called attractors, which are linked to each other through continuous pathways, can be identified. Specific attractors can define mental disorders. Their causal structure can be investigated with causal networks.

Conclusions

Powerful and reliable tools are available so that an alternative to current psychiatric classifications can be built based on a genuine biopsychosocial model. The proposed model is ready to be tested on real data.

]]>
<![CDATA[Is acting on delusions autonomous?]]> https://www.researchpad.co/product?articleinfo=5989dae5ab0ee8fa60bbd00e

In this paper the question of autonomy in delusional disorders is investigated using a phenomenological approach. I refer to the distinction between freedom of intentional action, and freedom of the will, and develop phenomenological descriptions of lived autonomy, taking into account the distinction between a pre-reflective and a reflective type. Drawing on a case report, I deliver finely-grained phenomenological descriptions of lived autonomy and experienced self-determination when acting on delusions. This analysis seeks to demonstrate that a person with delusions can be described as responsible for her behaviour on a ‘framed’ level (level of freedom of intentional action), even though she is not autonomous on a higher (‘framing’) level (level of freedom of the will), if, and only if, the goods of agency for herself and others are respected. In these cases the person with delusions is very nearly comparable to people in love, who are also not free to choose their convictions, and who could also be rightly held responsible for the behaviour flowing from their convictions.

]]>
<![CDATA[Has the sanctity of life law &#8216;gone too far&#8217;?: analysis of the sanctity of life doctrine and English case law shows that the sanctity of life law has not &#8216;gone too far&#8217;]]> https://www.researchpad.co/product?articleinfo=5989da7cab0ee8fa60b98df5

The medical profession consistently strives to uphold patient empowerment, equality and safety. It is ironic that now, at a time where advances in technology and knowledge have given us an increased capacity to preserve and prolong life, we find ourselves increasingly asking questions about the value of the lives we are saving. A recent editorial by Professor Raanan Gillon questions the emphasis that English law places on the sanctity of life doctrine. In what was described by Reverend Nick Donnelly as a “manifesto for killing patients”, Professor Gillon argues that the sanctity of life law has gone too far because of its disregard for distributive justice and an incompetent person’s previously declared autonomy. This review begins by outlining the stance of the sanctity of life doctrine on decisions about administering, withholding and withdrawing life-prolonging treatment. Using this as a foundation for a rebuttal, a proposal is made that Professor Gillon’s assertions do not take the following into account:

1) A sanctity of life law does not exist since English Common Law infringes the sanctity doctrine by tolerating quality of life judgements and a doctor’s intention to hasten death when withdrawing life-prolonging treatment.

2) Even if a true sanctity of life law did exist:

a) The sanctity of life doctrine allows for resource considerations in the wider analysis of benefits and burdens.

b) The sanctity of life doctrine yields to a competent person’s autonomous decision.

This review attempts to demonstrate that at present, and with the legal precedent that restricts it, a sanctity of life law cannot go too far.

]]>
<![CDATA[The moral code in Islam and organ donation in Western countries: reinterpreting religious scriptures to meet utilitarian medical objectives]]> https://www.researchpad.co/product?articleinfo=5989d9f5ab0ee8fa60b6fce9

End-of-life organ donation is controversial in Islam. The controversy stems from: (1) scientifically flawed medical criteria of death determination; (2) invasive perimortem procedures for preserving transplantable organs; and (3) incomplete disclosure of information to consenting donors and families. Data from a survey of Muslims residing in Western countries have shown that the interpretation of religious scriptures and advice of faith leaders were major barriers to willingness for organ donation. Transplant advocates have proposed corrective interventions: (1) reinterpreting religious scriptures, (2) reeducating faith leaders, and (3) utilizing media campaigns to overcome religious barriers in Muslim communities. This proposal disregards the intensifying scientific, legal, and ethical controversies in Western societies about the medical criteria of death determination in donors. It would also violate the dignity and inviolability of human life which are pertinent values incorporated in the Islamic moral code. Reinterpreting religious scriptures to serve the utilitarian objectives of a controversial end-of-life practice, perceived to be socially desirable, transgresses the Islamic moral code. It may also have deleterious practical consequences, as donors can suffer harm before death. The negative normative consequences of utilitarian secular moral reasoning reset the Islamic moral code upholding the sanctity and dignity of human life.

]]>
<![CDATA[Human embryonic stem cell research, justice, and the problem of unequal biological access]]> https://www.researchpad.co/product?articleinfo=5989da62ab0ee8fa60b91200

In 2003, Ruth Faden and eighteen other colleagues argued that a "problem of unequal biological access" is likely to arise in access to therapies resulting from human embryonic stem cell research. They showed that unless deliberate steps are taken in the United States to ensure that the human embryonic stem cell lines available to researchers mirrors the genetic diversity of the general population, white Americans will likely receive the benefits of these therapies to the relative exclusion of minority ethnic groups.

Over the past five years the problem of unequal biological access has not received much attention from politicians, bioethicists and even many researchers in the United States, in spite of the widely held belief in the country that there is an obligation to prevent and correct ethnic disparities in access to medical care. The purpose of this paper is to increase awareness of the problem of unequal biological access and of the need to do more than is currently being done to ensure that ethnic disparities in access to human embryonic stem cell-based therapies do not arise.

Specifically, this paper explains why the problem of unequal biological access will likely arise in the United States in such a way that white Americans will disproportionately receive most of the benefits of the therapies resulting from human embryonic stem cell research. It also argues for why there is an obligation to prevent these ethnic disparities in access from happening and outlines four steps that need to be taken towards meeting this obligation.

]]>
<![CDATA[Performance enhancement, elite athletes and anti doping governance: comparing human guinea pigs in pharmaceutical research and professional sports]]> https://www.researchpad.co/product?articleinfo=5989d9dcab0ee8fa60b68014

In light of the World Anti Doping Agency’s 2013 Code Revision process, we critically explore the applicability of two of three criteria used to determine whether a method or substance should be considered for their Prohibited List, namely its (potential) performance enhancing effects and its (potential) risk to the health of the athlete. To do so, we compare two communities of human guinea pigs: (i) individuals who make a living out of serial participation in Phase 1 pharmacology trials; and (ii) elite athletes who engage in what is effectively 'unregulated clinical research’ by using untested prohibited or non-prohibited performance enhancing substances and methods, alone or in combination. Our comparison sheds light on norms of research ethics that these practices exacerbate with respect to the concepts of multiplicity, visibility, and consistency. We argue for the need to establish a proper governance framework to increase the accountability of these unregulated research practices in order to protect the human guinea pigs in elite sports contexts, and to establish reasonable grounds for the performance enhancing effects, and the risks to the health of the athlete, of the methods and substances that might justify their inclusion on the Prohibited List.

]]>