Worst case bioethics

Teaching responsible conduct of research in the life sciences and the hidden curriculum

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Teaching responsible conduct of research in the life sciences and the hidden curriculum Kakuk, Péter


The last decade showed an increasing international interest in establishing the norms of scientific research. Current challenges to the integrity of science in the form of financial conflict of interests, data-management, abuse of authorship, research misconduct, and fraud has been the focus of ethical and policy analyses. New courses entered the curriculum of universities under the title of Responsible Conduct of Research and the ethics of science. There are significant international approaches for establishing an ethical a policy consensus for newly needed scientific norms and also for educating future scientists. However, there is conflict between the explicit values and norms embedded in these courses and norms and values young scientists acquire via their professional socialization. In this presentation I would like to focus on this problem of the hidden curriculum with asking the question of how our new educational approaches are suitable to change the everyday practice of scientists.
Experiences from the Heart of Jenin project

Khateb, Ismael

This talk is about the experience after the organ transplantation which took place from Ismael Khateb’s son to Israeli children. Organ transplantation across border of military and political conflict is not common. After the transplantations he felt a familial tie with those families whose children received his son’s organs. In this session Ismael Khateb will thematize the bodily basis for a relationship with those who were strangers and even at the “other side” before. Now he works with young people in different cultural projects and established a cinema in Jenin. For moments hostility might be overcome. New hopes and initiatives to further peace keeping, cultural activities, and personal relationships can develop.
Problems associated with reproductive technologies - The best interest of a surrogacy-born child versus the best interest of the surrogate mother's children: Finding a compromise for contradicting interests of children of one mother.

Katzenelson, Edna

A basic challenge in bioethics is the identification and the resolution of issues, which consist of people with contradicting needs and interests. This challenge is highlighted in the case of a surrogate mother, her own children and the needs of the child she will give birth to and will transfer for adoption. The law in Israel explicitly refers to the best interest of three persons in this situation: the child to be born, the adopting parents and the surrogate mother. The law does not address the surrogate mother's children. This omission is acute considering the clauses in the law prohibiting married women and women without children from becoming surrogates. Thus, surrogate mothers are by definition single mothers to children, and commonly of young age.

The surrogate mother’s own children, which are at the basis quite vulnerable as being in a single parent family, may be further exposed to hardship associated with their mother’s direct and indirect difficulties of the pregnancy. They may be hit by social stigmatization and from the need to assimilate in their world the role of the genetic parents and the disappearance of the baby sibling. Medical complications, prolonged hospitalizations and post-partum depression. The law has to address the interests of surrogates' children.

1. To meet them before their mother makes a contract with the parents of the child she will give birth to. To diagnose if they can confront the complicate situation of pregnancy of a child who will disappear.

2. To pay for psychological treatment for the children while pregnancy, and after the baby is transferred for adoption. To help their mother to support them while pregnancy and after birth, and when the baby’s parents vanish with him

Should pre-adolescent children be given full information regarding possible dangers in a state of emergency?

Katzenelson, Edna

Often children are found in the face of existential threats such as severe illness, a crisis in the family or public threat such as an earthquake alert or violent hostilities.

This question should pre-adolescent children be given full information regarding possible dangers in a state of emergency raises the dilemma whether to inform the child fully or to filter and colour information so as to protect his or her wellbeing. No less pressing is the question what would be “full information” given to children that are six or eleven years old Roberto Benini’s character, in the film Life Is Beautiful (La vita è bella, 1997), tells his son, who is with him in the concentration camp, that it is all a game that can be won. The father dies in the war, and the son tells us that the story helped him to survive. While Benini’s stretches the limits of credulity, it seems that the realistic choices of parents to children facing stress are a few:

To conceal information from the child, or to wait till the child raises questions and then to answer with the minimum possible information, or to initiate a discussion with the child according to his age and personality, at the level necessary to deal with information to which the child may be exposed from other sources and with the child’s own desire to know. We will try to cast this noble prescription in terms that fit contemporary bioethics and knowledge on child psychology.
A Good Death Requires a Process of Engagement with Fear

Keane, Lynn

This paper articulates an Aristotelian approach to the correct role of emotions – in particular of fear - in the process of death and dying. The central question that emerges in the paper is: when the object of emotion is the reality of one’s mortality, how should one feel and respond? From an external point of view human beings obviously have a natural lifespan, but one’s sense of one’s own experience does not embody this idea of a natural limit. The true significance of death can only be grasped from a subjective perspective, and from this standpoint one’s death is in most cases viewed as a worst case scenario. Aristotle advocates conceptualising death properly and he claims as death is the end of life that it is the most fearful thing of all. And while one must concede that there may be a certain objective perspective according to which the end of life has little significance, this perspective is not always available to the person in their dying process. The perspective one does have is essentially linked to one’s emotional sensibility. The fear of death is an unavoidable part of this sensibility; and this means that dying and death are fearful. Since, when in the flow of life one cannot work oneself into completely objective knowledge of the significance of death, one cannot eliminate one’s judgment of the fearfulness of death. Nevertheless, one can address the emotion of fear as a whole and allay it.

Contrary to critical opinion, a textual analysis of De Anima reveals that Aristotle provides the foundation of his theory of emotion therein, and thus makes it possible to piece together Aristotle’s theory of emotional mechanism. There is a constant relation between the mind and the object in an emotion, and integral to this is an emotional response. The judgment in fear when the object is death is the realisation that one’s life is coming to an end, and this reality is fearful and painful. In De Anima Aristotle establishes that emotional responses are intelligent and, therefore, valuable forms of communication. In light of this, De Anima illuminates the importance of addressing the emotional dimensions of the human being in the dying process so that one can die well. Narratives of dying taken from literature demonstrate that a kathartic development of emotion is natural to the dying process. However, they also provide cases in which the overwhelming fear of death prevented the person from dying well. An attempt to resolve the controversy that surrounds Aristotelian katharsis, results in the claim that it is a practical emotional therapy. In an endeavour to provide a plausible proposal for how emotions are to be balanced in the process of dying, I argue that Aristotelian katharsis provides a good model for this, as it demonstrates how to engage with the extreme fear of death in a safe context so that it may be overcome and allayed. A good death, therefore, involves an engagement with fear and not the extirpation of fear as the Stoics would have it.

When patients loose consciousness after requesting an end to life: coma and Alzheimer’s

Kimsma, Gerrit

Since physician-assisted dying has become acceptable practice in the Netherlands, changing the nature of debate from confrontation and acceptance into integration, ‘new’ clinical issues have confronted the Dutch with the issue of ethical acceptance or rejection. I intend to focus on two clinical cases where competence has become a central issue in ‘worst case developments’.

The first case concerns patients who have requested an end to their life, where legally required consultations on second opinions have taken place, yet the patients loose consciousness before the intervention can take place and the condition of suffering becomes an issue. I shall describe the policies of the Dutch Royal Medical Society (RDMA) on ‘Euthanasia and Lowered Consciousness’ and its consequences for the practice of euthanasia.

The second case concerns patients suffering from Alzheimer’s who have requested an end to their life, but who are incapable to repeat their requests at the time of the second opinion consultation because of inabilities to communicate on the subject. I shall focus on a recent actual case, describing the position of the law on advance written requests and the confrontation between the latest position paper of the RDMA and the decision of the Euthanasia Review Committees.
Current Legal Issues Concerning Embryo Research - International and European Union Law Perspective.

Kramska, Magdalena

Rapid progress in genetic engineering and reproductive medicine raised questions about the ability to understand the complexity of life processes and future possibility to apply this knowledge to human beings. Advances of the biomedical sciences opened up the possibility of manipulating early stages of human development. Achievements in the field of medically assisted procreation and genetics are closely followed by concerns about legal implications of new technologies, for they have the potential to change the self-understanding of the humankind.

The most difficult questions arise in regards to the legal status of the human embryo. Increasing knowledge about the nature of the very basic biological processes allows an intervention seeking to modify the human genome. It poses ethical and legal dilemmas for the modern society. New possibilities for the germ-line manipulations can be treated as an increase in freedom that requires a normative regulation, as opposed to empowerment for transformations that depends simply on our preferences and does not require limitation. Developing the legal framework governing the research on human embryo and the use of its results is a necessity. It is crucial to determine to what extent research and medical practice should be the object of legal control and what are the boundaries of these legal limitations. The ultimate objective, however, is that of providing the effective protection of the human rights and dignity of the human being. Consequently, since embryo research and reproductive medicine are matters of great controversy, it is difficult to establish the legal framework on the national level. Because of this reason it is necessary to analyze an international and European approach to the problems of embryo research and reprogenetics.

The aim of the presentation is to identify and analyze the major legal issues concerning embryo research and reprogenetics in order to present solutions provided by international and European Union law. This perspective allows the broader understanding of the problems and can be used in the interdisciplinary debate at international and national levels.
The Legal Regulation of Beginning and End of Life in Israel: Towards a Comparative Ontology

Lavi, Shai


 The paper offers a new comparative framework for analyzing the distinct ways in which Israeli law delineates, and consequently regulates, discrete stages of life and death. The paper identifies four central issues on which Israeli regulation significantly differs (or has differed) from other Western countries: stem-cell research, late abortions, withdrawal of life-sustaining treatment, and defining the moment of death. As many scholars have shown, Israeli law in these cases has been highly influenced by Jewish-Rabbinic law (e.g., Kahn, 2000; Prainsack, 2006; Hashiloni-Dolev, 2007). The paper takes one significant step further and develops a framework for understanding the Jewish-Rabbinic position and, consequently, Israeli regulation. Underlying the Jewish-Rabbinic position is not a commitment to specific values (such as the sanctity of life, pro-science and technology, a strive for a healthy body, e.g., Rosner and Bleich, 2000; Sinclair, 2003; Gross and Ravitsky, 2003; Weisberg, 2005), but rather a commitment to a distinct ontology, namely to a distinct way of conceptualizing and depicting facts (such as when human life emerges into potential existence, what the stages of pregnancy are, when dying begins and when death ensues). The paper identifies two main ways of conceptualizing the world, or two ontological patterns: a scientific ontology, which views the world through a technological and scientific lens, and a phenomenological ontology, which is grounded in a mundane and unmediated perception of the world. What characterizes Jewish law and Israeli regulation, in contradistinction to many other Western positions, is its grounding in a phenomenological ontology and the various ways in which it distances itself from the scientific and technological worldview while in conjunction accepting science and technology as instrumental means. 

Perceptions of nature, nurture and behaviour: what makes us who we are and what makes people behave the way they do?

Levitt, Mairi

Trying to separate out nature and nurture as explanations for behaviour, as in classic genetic studies of twins and families, is now said to be both impossible and unproductive. The nature-nurture debate is officially redundant. Geneticists argue that nature and nurture interact to affect behaviour through complex and not yet fully understood ways. An interactive model still seems to assume that nature and nurture, or genes and environments, are separable and, in practice, the debate continues. Research papers by psychologists and geneticists still use the title nature and nurture to consider their influences on everything from obesity, childhood neglect and educational outcomes to psychiatric disorders and sleep.

The aim of this pilot research was to explore ideas on the role of nature and nurture in violent and antisocial behaviour, with particular reference to age differences. Lay understanding of the causes of problem behaviour are relevant both for the public’s acceptance of criminal justice policy, and, because jury members may be asked to consider evidence on common genetic traits said to be associated with violence. These factors have already been cited in criminal trials in USA and Italy.

Until recently, social and environmental theories of crime have been dominant in criminology and in public policy and biological theories have been seen as discredited. However, with increasing research and public interest in genetics more attention has been paid to biological aspects of crime. Media reports have headlined ‘warrior genes’, ‘the aggressive gene’ and the ‘get out of jail free gene’, all referring to levels of monoamine oxidase A (MAOA). Think tanks and ethics groups have considered the ethics and practicalities of genetic testing for behavioural traits. It was therefore hypothesised that public perceptions of the causes of youth crime and antisocial behaviour might reflect an increasing interest in ‘nature’, although popular understandings may never have discarded notions of ‘bad blood’ and ‘pure evil’ .

Given the value put on individualism, autonomy and choice in modern society it was expected that when considering the question ‘who or what made you as you are today?’ respondents would be reluctant to see their own lives as determined by nature/biology/genes but might be more willing to give determinist explanations of other people’s lives and of violent and problem behaviour in others. In fact younger people rejected deterministic understandings of both environment and genes in others while older people were more willing to see environment/nurture as crucial factors in behaviour, particularly in children [in England and Wales the age of criminal responsibility is 10 years]. Older respondents more often expressed the view that environmental factors should be the priority for policy makers and were more likely to see dangers for individuals and society in explanations of behaviour that emphasise nature as causative. The support of the Economic and Social Research Council (ESRC) is gratefully acknowledged. This work is part of the Research Programme of the ESRC Genomics Network at Cesagen (ESRC Centre for Economic and Social Aspects of Genomics).

Lock up Your Patients? Ethical Challenges in the Use of Detention on Tuberculosis Patients

Lin, Shin-Rou


While physicians play significant roles in a TB detention program, challenges related to medical ethics and professionalism have not drawn much attention. In the face of the resurgence of TB and the emergence of multidrug-resistant TB, detention has been used in a number of international jurisdictions since the 1990s. In a TB detention program, physicians assist public health in a couple of tasks. First, due to the medical profession’s unique expertise, public health authorities inevitably need physicians’ assist in the design of the detention program. Second, because physicians would likely to note patients with active and infectious TB in the first place, public health authorities may rely on physicians’ alert to warn the risk of the patient to public health and prompt health authorities to evaluate the necessity of imposing detention. Third, physicians may involve in the care of patients under detention. When serving in these positions, what are physicians’ ethical obligations to patients as well as to the general public?

Researches on physicians’ practices related to the use of detention on TB patients have raised critical questions about medical ethics and professionalism. A survey conducted in Ireland found that physicians used the threat of detention as a strategy to obtain TB patients’ compliance. An empirical research on Taiwan’s TB isolation program also reveals that physicians’ decisions to send referrals to nominate their patients for isolation might not be based solely on their judgment of the risk the patient posed; rather, their decisions in initiating the isolation procedure were likely to be influenced by the payment provided by the government. These data suggest that while granting physicians the ability to initiate the detention process is well-intended, it has a tendency to be misused. Hence a national defense against public health risks associated with TB must ensure that health care professionals and the society consider and address the ethical issues that might undermine the legitimacy of the use of personal control measures.
When Scientists Become Entrepreneurs, What Do the General Public Think About the Conflict of Interest Issues? -- Results of a Public Survey in Taiwan

Liu, Hung-En

In the past three decades, biomedical research collaborations between industry and academia have been increasing substantially. Not only do many pharmaceutical companies sponsor medical studies, but some researchers also hold significant financial interests in the results of their research. Many biomedical scientists themselves even become investors or founders of the pharmaceutical companies which plan to sell the products they study. This phenomenon without doubt causes conflict of interest to arise more often. When scientists become entrepreneurs, what do the general public think about the possible conflict of interest issues? Would the general public’s trust in the medical research be affected by the researchers’ conflict of interest situations? Would the general public tends to think it is necessary to require the researchers to disclose their financial interests in the informed consent process? Would the conflict of interest affect the public’s willingness to participate in the research conducted by the scientists who are also entrepreneurs? These are empirical questions which cannot be answered by mere ethical theories or reasoning. Therefore, in 2011, the author of this paper collaborated with Academia Sinica using Taiwanese Household Registry Database to conduct a face-to-face survey of a random sample of 1,503 Taiwanese adults. Survey results show that 80.1% of the subjects think that the results of medical studies may be affected by the financial interests held by the researchers, and their willingness to participate in the research conducted by those researchers goes down significantly. Furthermore, 69.9% of the subjects think it is necessary to require those researchers to disclose their financial interests in the informed consent process. The survey results provide evidence for the necessity of regulating conflict of interest situations in order to preserve public trust in medical research.
The use of worst case scenarios in bioethics

Łuków, Paweł

Studying worst cases has become a standard in bioethics. Such cases are discussed on professional forums and in medical schools. In my presentation I want to ask if the use of the worst case scenarios is a fruitful approach for scholars and educators and if so, how such cases should be used by scholars or by teachers. For this purpose I will address two questions. First, what is expected from analyses of worst case scenarios as a basis for a theoretical argument and as an instructional tool? Secondly and more fundamentally, how do we know that a given scenario is worst? I will begin with the latter question and argue that in order for a case to count as worst, a normative background is needed which can ground judgments about how bad that scenario is. This background can be provided by a normative theory or by one’s intuitive judgments. In both cases appealing to worst cases in order to formulate proposals for problem solution or for policy making is questionable. If normative theories are to provide guidance for action the study of cases with the intention to support solutions of practical problems is superfluous; if the choice of a case is guided by the case analyst’s moral intuitions the question is what makes such a person’s intuitions reliable. Answering the question about what can be expected from an analysis of worst cases, I will use I. Kant’s distinction between Beispiel and Exempel. I will argue that if the use of worst cases requires a background normative theory, analyses of such scenarios can be useful at most as illustrations of theoretical claims, not as arguments for proposals. This theoretical placement of the worst case scenarios suggests that analyses of such cases in the classroom can encourage students to analyse difficult problems in order to exercise their judgment which has already been informed by ethical beliefs. Or, if one is sceptical about the very possibility of a normative theory, analyses of worst case scenarios can be seen as negotiations of prospective ethical standards. In either case analyses of worst case scenarios require a specific normative context.

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