In the intellectual confusion prevailing since the demise of Marxism and “marxism”, the attempt is made to define democracy as a matter of pure procedure, explicitly avoiding and condemning any reference to substantive objectives. It can easily be shown, however, that the idea of a purely procedural “democracy” is incoherent and self-contradictory. No legal system whatsoever and no government can exist in the absence of substantive conditions which cannot be left to chance or to the workings of the “market” but (...) must be posited as objectives of political activity. The confusion results from a deficient understanding of what makes a society and an empty idea of “freedom”. The objective of politics is not happiness, an affair to be left to the individuals, but it certainly is liberty understood as participation in the governance of the polity; it is also the pursuit of the common good, defined as the sum of the prerequisites and facilitations of individual autonomy depending on collective action, and as the realization of commonly agreed collective goals. (shrink)

Deep Brain Stimulation is currently being investigated as an experimental treatment for patients suffering from treatment-refractory AN, with an increasing number of case reports and small-scale trials published. Although still at an exploratory and experimental stage, initial results have been promising. Despite the risks associated with an invasive neurosurgical procedure and the long-term implantation of a foreign body, DBS has a number of advantageous features for patients with SE-AN. Stimulation can be fine-tuned to the specific needs of the particular patient, (...) is relatively reversible, and the technique also allows for the crucial issue of investigating and comparing the effects of different neural targets. However, at a time when DBS is emerging as a promising investigational treatment modality for AN, lesioning procedures in psychiatry are having a renaissance. Of concern it has been argued that the two kinds of interventions should instead be understood as rivaling, yet “mutually enriching paradigms” despite the fact that lesioning the brain is irreversible and there is no evidence base for an effective target in AN. We argue that lesioning procedures in AN are unethical at this stage of knowledge and seriously problematic for this patient group, for whom self-control is particularly central to wellbeing. They pose a greater risk of major harms that cannot justify ethical equipoise, despite the apparent superiority in reduced short term surgical harms and lower cost. (shrink)

Empirical evidence suggests that some health professionals believe consent procedures for the emerging technology of non-invasive prenatal diagnosis (NIPD) should become less rigorous than those currently used for invasive prenatal testing. In this paper, we consider the importance of informed consent and informed choice procedures for protecting autonomy in those prenatal tests which will give rise to a definitive result. We consider whether there is anything special about NIPD that could sanction a change to consent procedures for (...) prenatal diagnosis or otherwise render informed decision-making less important. We accept the claim that the absence of risk of miscarriage to some extent lessens the gravity of the decision to test compared with invasive methods of testing. However, we also claim that the definitive nature of the information received, and the fact that the information can lead to decisions of great significance, makes NIPD an important choice. This choice should only be made by means of a rigorous and appropriately supported decision-making process (assuming that this is what the pregnant woman wants). We conclude that, on balance, consent procedures for NIPD should mirror those for invasive testing, albeit without the need to emphasise procedure-related risk. (shrink)

Young children with cancer are treated with interventions that can have a high risk of compromising their reproductive potential. ‘Fertility preservation’ for children who have not yet reached puberty involves surgically removing and cryopreserving reproductive tissue prior to treatment in the expectation that strategies for the use of this tissue will be developed in the future. Fertility preservation for prepubertal children is ethically complex because the techniques largely lack proven efficacy for this age group. There is professional difference of opinion (...) about whether it is ethical to offer such ‘experimental’ procedures. The question addressed in this paper is: when, if ever, is it ethically justifiable to offer fertility preservation surgery to prepubertal children? We present the ethical concerns about prepubertal fertility preservation, drawing both on existing literature and our experience discussing this issue with clinicians in clinical ethics case consultations. We argue that offering the procedure is ethically justifiable in certain circumstances. For many children, the balance of benefits and burdens is such that the procedure is ethically permissible but not ethically required; when the procedure is medically safe, it is the parents’ decision to make, with appropriate information and guidance from the treating clinicians. We suggest that clinical ethics support processes are necessary to assist clinicians to engage with the ethical complexity of prepubertal fertility preservation and describe the framework that has been integrated into the pathway of care for patients and families attending the Royal Children’s Hospital in Melbourne, Australia. (shrink)

The article aims at challenging the very idea of bioethics. Starting with a thought experiment which puts into perspective relations between law and ethics, a reflexion on founding moments of bioethics as a distinctive discipline will be proposed in order to contest some of its assumptions. Less traditional ways of seeing the field will be subsequently analyzed, yet the conclusion of this exploration will remain critical: we should rather think of an alternative way of seeing moral expertise in the biomedical (...) sphere, founded on plural knowledge of diverse agents who leave their moral presuppositions aside as much as this is possible. (shrink)

We critically discuss Cleland''s analysis of effective procedures as mundane effective procedures. She argues that Turing machines cannot carry out mundane procedures, since Turing machines are abstract entities and therefore cannot generate the causal processes that are generated by mundane procedures. We argue that if Turing machines cannot enter the physical world, then it is hard to see how Cleland''s mundane procedures can enter the world of numbers. Hence her arguments against versions of the Church-Turing (...) thesis for number theoretic functions miss the mark. (shrink)

Swedish hunters sometimes appeal to an inviolate ‘right to exist’ for wolves, apparently rejecting NIMBY. Nevertheless, the conditions existence hunters impose on wolves in practice fundamentally contradict their use of right to exist language. Hunters appeal to this language hoping to gain uptake in a conservation and management discourse demanding appropriately objective ecological language. However, their contradictory use of ‘right to exist' opens them up to the charge that they are being deceptive – indeed, right to exist is a 'disguised (...) NIMBY!' We address this situation by distinguishing hunters’ criticisms of wolves from the procedures for reaching objective policy decisions. (shrink)

Disability theorists have argued that the belief that we should prevent the birth of people with disabilities is prejudicial against disabled people. Particularly influential has been the Expressivity Objection to reproductive selective procedures aimed at eliminating disability. The Expressivity Objection in its strongest form says that to prevent the birth of a disabled child is to express the view that a disabled life is not worth living. In its weaker form, it says that to prevent the birth of a (...) disabled child is to perpetuate the stigma of disability or send the message that disabled people are not welcome in this world.Disability, as it is spoken of in these contexts, refers to... (shrink)

Obtaining prospective written consent from women to participate in trials when they are experiencing an obstetric emergency is challenging. Alternative consent pathways, such as gaining verbal consent at enrolment followed, later, by obtaining written consent, have been advocated by some clinicians and bioethicists but have received little empirical attention. We explored women’s and staff views about the consent procedures used during the internal pilot of a trial, where the protocol permitted staff to gain verbal consent at recruitment. Interviews with (...) staff and participating women. Data were analysed thematically and interviews were cross-compared to identify differences and similarities in participants’ views about the consent procedures used. Women and some staff highlighted benefits to obtaining verbal consent at trial enrolment, including expediting recruitment and reducing the burden on those left exhausted by their births. However, most staff with direct responsibility for taking consent expressed extreme reluctance to proceed with enrolment until they had obtained written consent, despite being comfortable using verbal procedures in their clinical practice. To account for this resistance, staff drew a strong distinction between research and clinical care and suggested that a higher level of consent was needed when recruiting into trials. In doing so, staff emphasised the need to engage women in reflexive decision-making and highlighted the role that completing the consent form could play in enabling and evidencing this process. While most staff cited their ethical responsibilities to women, they also voiced concerns that the absence of a signed consent form at recruitment could expose them to greater risk of litigation were an individual to experience a complication during the trial. Inexperience of recruiting into peripartum trials and limited availability of staff trained to take consent also reinforced preferences for obtaining written consent at recruitment. While alternative consent pathways have an important role to play in advancing emergency medicine research, and may be appreciated by potential recruits, they may give rise to unintended ethical and logistical challenges for staff. Staff would benefit from training and support to increase their confidence and willingness to recruit into trials using alternative consent pathways. This qualitative research was undertaken as part of the GOT-IT Trial. Date of registration 26/03/2014. (shrink)

This article concerns the implementation of new EU Directives coordinating the procedures for awarding public contracts in European Union Member States. In a number of countries, including Poland, the process of their implementation (Directive 2014/24/eu of the European Parliament and of the Council of 26 February 2014 on public procurement; Directive 2014/25/eu of the European Parliament and of the Council of 26 February 2014 on procurement by entities operating in the water, energy, transport, and postal services sectors; Directive 2014/23/eu (...) of the European Parliament and of the Council of 26 February 2014 on the award of concession contracts) was delayed. In most cases, the modernization of EU regulations on public procurement required a thorough modification of national regulations in this respect. As a result of the introduction of the package of new Directives, the European Union public procurement market has undergone substantial changes. The need to adjust legal regulations to the changing political, social, and economic situations in a better way has resulted in the transposition of the modernized EU Directives concerning public procurement to the Polish legal system, affecting the final shape of the new Polish Public Procurement Law. The implementation of the package of new Directives has significantly affected the functioning of the Polish public procurement market. For the entities operating in this market, this means the necessity to expand their knowledge, so as to become familiar with the new legal solutions in this respect. (shrink)

This paper examines how a classroom culture develops advanced strategies and procedures for handling complex digital tools. We report from a vocational Media and Communication course at an Upper Secondary School in Oslo, Norway. Our analysis reveals how a procedure called practical assignments has developed historically at the school, and how this procedure is carried out in the classroom. Theoretically, our study is informed by Activity Theory, which affords us tools to analyze how social institutions and learning trajectories evolve (...) over time, and how longitudinal dimensions emerge in situ. Our findings show how teachers and learners create a space for solving context-specific problems involving sophisticated technology. A historical analysis is here crucial not only in understanding why digital technologies are used in specific ways, but also how they evolve into classroom conventions. (shrink)

The 2005 Report on Social Responsibility and Health of the UNESCO International Bioethics Committee (Ibc) proposes a new approach to implementing the right to healthcare and suggests a number of Courses of Action to be followed in various fields. Based on the latest available data, we intend to present an overview of the current state of European health systems in two of those fields—decision-making procedures and quality assurance in health care—and to attempt a comparison of the situation with the (...) Report’s provisions, in order to pave the way for the identification of what still has to be done to bridge international recommendations and the reality of policy and practice in Europe’s health care. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Consenting for Novel and Dangerous Surgical Procedures with Minimal Supporting EvidenceMichelle J. ClarkeFrank1 was a 19–year–old man referred to me after a workup for back pain led to the discovery of a large, aggressive tumor in his sacrum. The tumor wrapped around the nerves controlling bowel, bladder, and leg function. We performed a needle biopsy and learned that the tumor was an angiosarcoma, an extremely aggressive and usually (...) deadly form of cancer. However, the tumor was unique in that it theoretically could be cured if removed in one piece. But, to do so would necessitate sacrificing the nerves, leaving the patient irreversibly incontinent, lacking sexual function, and confined to a wheelchair.Once we knew the diagnosis, Frank came to the office with his family to discuss treatment options. He appeared terrified and was almost silent through the appointment, deferring most questions to his parents. Due to the speed of tumor growth, we discussed palliative therapy, conventional treatment, and the one–piece or “en bloc” surgery, which was new and unproven for his disease. Based on the remarkable tumor growth we noted during the work–up, with palliative treatment the patient would likely survive for less than six months. Conventional treatment, in which surgery is done to remove part of the tumor while sparing the nerves to bowel and bladder function, was known to have a high rate of recurrence and death. Further, this tumor didn’t respond well to radiation and chemotherapy, so chance of survival was limited, although his life might have been extended for a short period. Thus our conversation turned to the novel “en bloc” procedure.The en bloc procedure offered a hope of long–term survival unlike the other options. However, this came with an enormous cost. The surgery itself would be planned to occur over three days with five separate surgical teams and a very real chance of major complications or death. Nerves to bowel and bladder would be cut, irreversibly leaving the patient without sexual function, and completely incontinent with a urinary catheter and colostomy. Walking was expected to be disrupted or potentially impossible due to the nerve resection. We went to great lengths over the course of many visits to describe the impact of the surgery on the patient’s function, and the impact on his quality of life. To make matters more challenging, as this procedure was so new and the tumor so rare, research did not yet exist to quantify his likelihood of long–term survival.Personally I was very uncomfortable with the situation. From a medical standpoint, the surgery offered was the best distillation of research and professional experience. En bloc surgery offered the best—if not the only—chance for survival in [End Page 5] this young man. Additionally, having treated many spine–injured patients I was aware that many patients with similar deficits led happy and productive lives following an emotional and physical adjustment period. However the surgery was also extreme. I worried that we would not be able to accomplish the goal of a one–piece resection and would accidentally spill some of the tumor, creating all of the deficits but no survival benefit. Frankly, I thought there was a 25% chance that would happen, which was explained to the family preoperatively. Were we overreaching our abilities and making a dying patient’s life worse by proceeding?Second, I was uneasy about the social situation. The patient’s family was very supportive, traveling with him to all appointments and assisting with his care. The patient himself usually deferred all scheduling to his mother, which wasn’t entirely unusual for such a young man. However it was difficult to grasp how much the patient understood of his disease or supported the plan. We attempted to delve more deeply into his thoughts, including without his parents present, but got only short answers, which revealed little. While the family appeared to have accepted the diagnosis and wanted to get to the business of treatment, the patient seemed to me to still carry the shock of his recent cancer diagnosis. Pushed by the rapid tumor growth, we were limited in how long we could wait for... (shrink)

The introduction of genomics and biobanking methodologies to the African research context has also introduced novel ways of doing science, based on values of sharing and reuse of data and samples. This shift raises ethical challenges that need to be considered when research is reviewed by ethics committees, relating for instance to broad consent, the feedback of individual genetic findings, and regulation of secondary sample access and use. Yet existing ethics guidelines and regulations in Africa do not successfully regulate research (...) based on sharing, causing confusion about what is allowed, where and when. In order to understand better the ethics regulatory landscape around genomic research and biobanking, we conducted a comprehensive analysis of existing ethics guidelines, policies and other similar sources. We sourced 30 ethics regulatory documents from 22 African countries. We used software that assists with qualitative data analysis to conduct a thematic analysis of these documents. Surprisingly considering how contentious broad consent is in Africa, we found that most countries allow the use of this consent model, with its use banned in only three of the countries we investigated. In a likely response to fears about exploitation, the export of samples outside of the continent is strictly regulated, sometimes in conjunction with regulations around international collaboration. We also found that whilst an essential and critical component of ensuring ethical best practice in genomics research relates to the governance framework that accompanies sample and data sharing, this was most sparingly covered in the guidelines. There is a need for ethics guidelines in African countries to be adapted to the changing science policy landscape, which increasingly supports principles of openness, storage, sharing and secondary use. Current guidelines are not pertinent to the ethical challenges that such a new orientation raises, and therefore fail to provide accurate guidance to ethics committees and researchers. (shrink)

레오나르드 넬손이 새롭게 주창하고 그의 제자 구스타브 헥크만이 계승·발전시킨 ‘新 -소크라테스 대화’의 방법이 구체적으로 실행되는 절차의 표준적 모델을 비판적으로 검토 하는 것이 이 논문의 목표이다. 이에 필자는 넬손-헥크만 전통의 대화 방식을 연구하고 실천하는 데에 주도적 역할을 하는 단체인 GSP(Gesellschaft fuer Sokratisches Philosophieren)가 제시하는 대화 실행의 표준적 실행 모델을 중심으로 요스 케쎌스의 ‘모 래시계-모델’과 데트레프 호르스터의 대화 실행 모델을 소개하고, 각 모델을 이 대화의 방법적 원리인 ‘추상의 역행적 방법’의 수행이라는 관점에서 비교 검토할 것이다. 이를 통 해 각 모델이 가지는 방법론적 장단점을 (...) ‘소크라테스 대화’의 이상적 전형과 규칙을 기준 으로 삼아 비판적으로 밝혀보고자 한다. (shrink)

The research ethics committee is a key element of university administration and has gained increasing importance as a review mechanism for those institutions that wish to conduct responsible...

ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with (...) RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

How can health plans make fair determinations about when “experimental” (and costly) treatments such as high dose chemotherapy with autologous bone marrow transplantation should be covered despite lack of clear clinical consensus about their benefits? Different models for managing “last chance” therapies evolving in some health plans offer promising examples of how issues of fairness and legitimacy in decisionmaking can be addressed.

There have been many attempts during the history of applied ethics that have tried to develop a theory of moral reasoning. The goal of this paper is to explicate one aspect of the debate between various attempts of offering a specific method for resolving moral dilemmas. We contrast two kinds of deliberative methods: deliberative methods whose goal is decision-making and deliberative methods that are aimed at gaining edifying perspectives. The decision-making methods assessed include the traditional moral theories like utilitarianism and (...) Kantianism, as well as second order principles, such as principlism and specified principlism. In light of this assessment, we suggest taking a closer look at two perceptive models, casuistry and particularism. These models are used for dealing with moral dilemmas that provide for edifying perspectives rather than decision-making. These perceptive models, though less scientific and not as good at prescribing an action, are more human in the sense that they enrich our moral sensibilities and enhance our understanding of the meaning of the situation. (shrink)

ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with (...) RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

Ethics and ethical behaviour are the fundamental pillars of a civilised society. The focus on ethical behaviour is indispensable in certain fields such as medicine, finance, or law. In fact, ethics gets precedence with anything that would include, affect, transform, or influence upon individuals, communities or any living creatures. Many institutions within Europe have set up their own committees to focus on or approve activities that have ethical impact. In contrast, lesser-developed countries are trying to set up these committees to (...) govern their academia and research. As the first European consortium established to assist academic integrity, European Network for Academic Integrity, we felt the importance of guiding those institutions and communities that are trying to conduct research with ethical principles. We have established an ethical advisory working group within ENAI with the aim to promote ethics within curriculum, research and institutional policies. We are constantly researching available data on this subject and committed to help the academia to convey and conduct ethical behaviour. Upon preliminary review and discussion, the group found a disparity in understanding, practice and teaching approaches to ethical applications of research projects among peers. Therefore, this short paper preliminarily aims to critically review the available information on ethics, the history behind establishing ethical principles and its international guidelines to govern research.The paper is based on the workshop conducted in the 5th International conference Plagiarism across Europe and Beyond, in Mykolas Romeris University, Lithuania in 2019. During the workshop, we have detailed a) basic needs of an ethical committee within an institution; b) a typical ethical approval process ; and c) the ways to obtain informed consent with some examples. These are summarised in this paper with some example comparisons of ethical approval processes from different universities. We believe this paper will provide guidelines on preparing and training both researchers and research students in appropriately upholding ethical practices through ethical approval processes. (shrink)

Despite the rapid adoption of technology in human resource departments, there is little empirical work that examines the potential challenges of algorithmic decision-making in the recruitment process. In this paper, we take the perspective of job applicants and examine how they perceive the use of algorithms in selection and recruitment. Across four studies on Amazon Mechanical Turk, we show that people in the role of a job applicant perceive algorithm-driven recruitment processes as less fair compared to human only or algorithm-assisted (...) human processes. This effect persists regardless of whether the outcome is favorable to the applicant or not. A potential mechanism underlying algorithm resistance is the belief that algorithms will not be able to recognize their uniqueness as a candidate. Although the use of algorithms has several benefits for organizations such as improved efficiency and bias reduction, our results highlight a potential cost of using them to screen potential employees during recruitment. (shrink)

There is widespread agreement among both supporters and opponents that affirmative action either must not violate any principle of equal opportunity or procedural justice, or if it does, it may do so only given current extenuating circumstances. Many believe that affirmative action is morally problematic, only justified to the extent that it brings us closer to the time when we will no longer need it. In other words, those that support affirmative action believe it is acceptable in nonideal theory, but (...) not ideal theory. This paper argues that affirmative action is entirely compatible with equal opportunity and procedural justice and would be even in an ideal world. I defend a new analysis of Rawlsian procedural justice according to which it is permissible to interfere in the outcomes of procedures, and thus I show that affirmative action is not morally problematic in the way that many have supposed. (shrink)

Building on influential work in virtue ethics, this collection of essays examines the categories of self, person, and anthropology as foci for comparative analysis. The papers unite reflections on theory and method with descriptive work that addresses thinkers from the modern West, Christian and Jewish Late Antiquity, early China, and other settings. The introduction sets out central methodological issues that are subsequently taken up in each essay, including the origin of the categories through which comparison proceeds, the status of these (...) categories in the process of comparison, and the goals of comparison. In considering the question of goals, the introduction draws connections between comparative study and historical study within one tradition. Both types of analysis can bridge the gap between historical and normative work by attending to the ways in which the questions a scholar asks - not just the answers found - vary from one context to another. (shrink)

In their manuscript, Nielsen Busch and Mjaaland (2023) argue that controlled donation after circulatory death (cDCD) is compatible with the dead donor rule (DDR) by describing the DDR and the incor...