Worst case bioethics



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Caring for families at sudden cardiac death: A balance between closeness and distance


Bremer, Anders

Anders.Bremer@hb.se


Out-of-hospital cardiac arrest (OHCA) is a lethal health problem that affects more than half a million people in the United States and Europe each year. As resuscitation attempts are unsuccessful in most of the cases, ambulance professionals often face the needs of bereaved family members. Decisions to continue or terminate resuscitation attempts at OHCA are influenced by factors other than patient clinical characteristics, such as the personnel’s knowledge, attitudes, and beliefs regarding family emotional preparedness. Research exploring how ambulance personnel are affected by family dynamics and the emotional context, and how they are able to provide care for bereaved family members is sparse. It is also a lack of research into why ambulance professionals sometimes administer physiologically futile cardiopulmonary resuscitation (CPR) to patients with cardiac arrest to benefit family members. This way of meeting families’ grief reactions implies ethical problems.

Based on an empirical study of ambulance professional’s experiences of caring for families when patients suffer cardiac arrest and sudden death, and an ethical analysis exploring arguments for providing physiologically futile CPR, the issue of caring for bereaved family members in ethical good and bad ways is explored. The empirical study results show that ambulance personnel experience a concomitant responsibility, sometimes failing to prioritize between responsibilities as a result of their own perceptions, feelings and reactions. Moving from patient care to family care imply a movement from well-structured guidance to a situational response where the personnel are forced to balance between interpretive reasoning and a more direct emotional response at their own discretion. With such affective response in decision-making, the personnel risk erroneous conclusions and care relationships with elements of dishonesty, misguided benevolence and false hopes. The ability to recognize and respond to people’s existential questions and needs is essential, and dependent on the ambulance personnel’s balance between closeness and distance, and on their courage to meet emotional expressions of the families, as well as the personnel’s own vulnerability. A need for ethical competence is invoked by the presence of family members, placing great demands on mobility in the decision-making process, between medical care of the patient and caring for family members.

The conclusion is that the strategy of ambulance professionals in the care of bereaved family members should be to avoid additional suffering by focusing on the relevant care needs of the family members and provide support, arrange for a peaceful environment and administer acute grief counselling at the scene, which might call for a developed ethical caring competence. Opportunities to reflect on these situations within a framework of care ethics, continuous moral education, and clinical ethics training are needed. Ambulance personnel also need training in awareness of the needs of families suffering sudden bereavement, as well as support and help to deal with personal discomfort.
Professional license?

Brudney, Daniel

dbrudney@uchicago.edu
There has been much debate over whether a medical professional may refuse to participate in patient treatment that is at odds with that professional’s conscience, in most cases with her religious conscience. Sometimes the claim is cast as a very general right of conscientious refusal, applicable to all people in all employment contexts; sometimes it is cast as a claim specific to medical professionals and their professional judgments. I argue that at issue are the kinds of reasons a professional, especially a medical professional, may use in making a professional decision. I argue (1) that there is no general moral right of conscientious refusal, and (2) that the nature of professionalism does not support a professional right of refusal. I claim that professionals must give professional (rather than personal) reasons for what they do or refuse to do, and that these are reasons that must be capable of being seen as professional reasons by all (or at least a substantial majority of) members of the relevant profession. Religious reasons, as well as other reasons, including some moral reasons, will not pass the “professional reasons” test.

I argue further that when, as is sometimes inevitable, the judgments of a medical professional incorporates values, the reasons invoked to support such values must be reasons that all citizens could (not necessarily would) accept, each from her own religious or moral standpoint. Reasons that would require citizens to adopt a new religious or general moral view are not appropriate. The value-laden reasons a medical professional gives must be what John Rawls has called public reasons. This requirement applies to medical professionals because they are licensed by the state to exercise monopolistic authority with regard to crucial and often live-saving activities; moreover, much of the educational costs and income stream of medical professionals comes directly or indirectly from the state.

The practical implications of my analysis will displease both the left and the right. Any adequate account of conscientious refusal must be content-neutral, i.e., must not depend on the content of the refuser’s religious or moral beliefs. The content-neutrality of my view yields outputs troubling to each side of the political spectrum. Moreover, my analysis sets the stage for other questions. That there is no right of conscientious refusal does not entail that there should be no accommodation of conscience, either within a single medical institution or by permitting religious medical institutions (though publicly licensed, funded, and so forth) to limit their offerings by reference to religious teachings. My analysis entails that accommodation is not a right but a matter of sensible public policy. Here, I propose a particular balance among competing interests, roughly, that accommodation is acceptable when it neither interferes with an institution’s provision of services to patients nor reflects invidiously on the equal moral status of any patient. The specifics of my proposal will be contested. That is less important than the thrust of my analysis – that institutional accommodation of conscience concerns good social policy, not fundamental individual rights.
Ethical issues of memory intervention in Worst case bioethics

Cabrera, Laura

laura.cabrera@unibas.ch
One very important core faculty associated with brains is memory. Memory plays a decisive role in our lives insofar as it (a) relates to the core of who we are in the most direct way (identity and continuity of the self), (b) helps us building an interpretation of us and our environment (it gives us a story, hopefully a coherent one, of ourselves and our world by interpreting, constructing and condensing life experiences), and (c) gives us a sense of continuity and connection to ourselves and to others. Taking into consideration the role memory has in our lives, it can be argued that it also plays a crucial role for our moral life. In this regard, our past experiences enable us to find a narrative of how we come to be who we are now, to learn and interpret the moral of our experiences, and to act in appropriate moral ways. It is because of all these characteristics that the ethical implications of memory interventions aimed at dampening or enhancing memories related to war, disasters and similar difficult situations should be taken seriously. In this paper I start by highlighting the importance of memory for our moral life and general wellbeing. After this I move on to discuss some of the possible interventions as well as interventions under research for memory modification, in particular I focus on the case of dampening memories to treat post-traumatic stress disorder and memory enhancement as a way to preserve memories of events like wars and disasters. Then, I assess different ethical aspects of these memory interventions for both individuals and society. The paper ends up with a suggested framework to assess the permissibility of memory modification interventions in the previously discussed scenarios as well as highlighting the difficulties of determining when our memories should become the subject of biomedical and other non-therapeutic interventions.
DNA Identification of human biological material from Mass Disaster: some ethical issues

Caenazzo, Luciana; Pegoraro, Renzo

luciana.caenazzo@unipd.it
Mass disasters can involve natural (e.g. earth quakes, volcanoes, avalanches, hurricanes, and tsunamis) or non-natural catastrophes (e.g. transportation accidents, terrorist activities, wars, or political crisis). Each incident has its own characteristics and will involve a different approach. Depending on the nature of the event, the safeguarding and collection of forensic evidence will also have to be considered as part of the field response procedure. Forensic DNA profiling is increasingly becoming an important tool in the individual identification in the aftermath of mass disaster. While forensic geneticists are often not included as first responders, DNA sample collection and a strategy for DNA-based victim identification needs to be part of the community’s preparedness plan, in fact the preparedness plan of the laboratory needs to include policies for family notification, long-term sample disposition, and data archiving.

There has been very little systematic effort to identify and analyze the major ethical and policy challenges associated with this new use of genetic technology. One of the objectives of the forensic investigation of human remains is to identify the remains and, if possible, return them to the family of the dead person. This objective helps family members by ascertaining the fate of their relative and allowing the remains to be handled in a culturally appropriate manner, thus enabling the families of the missing to mourn their loss. Ethical issues are associated with the use of DNA identification, because information contained in a person’s DNA is sensitive and it is a unique identifier and may contain information about a person’s family and intimate associations. International law does not have any specific provisions for protecting genetic data in mass disaster. International humanitarian law and international human rights law recognize the need to provide special protection for persons affected by armed conflict. However, these bodies of law contain only general principles relating to confidentiality, privacy, non-discrimination, and human dignity that can be applied to the protection of genetic data. It seems important to evaluate how to deal with: incidental findings (e.g. misattributed paternity/maternity), ethical acceptance of secondary uses of the biological materials collected (e.g. sample storage and use), use/misuse associated with the creation of large genetic databases, and last but not least with issues related to privacy that has to be rigorously protected to ensure the respect of human individual right.


Canguilhem and the ethical-philosophical character of life sciences

Czeresnia, Dina

dina@ensp.fiocruz.br

This essay aims at pointing out that the concept of vital normativity of Georges Canguilhem (1904-1995) is crucial to highlight a central issue with regard to challenges to current biological knowledge. This concept, while stating that value is an irreducible property of life, presents an essential question concerning not only the transformation of the sciences of life, but also the relation between science and philosophy.

The controversy related to biological knowledge is linked to important problems concerning the models of health assistance. From the epistemological point of view, the great issue is the duality that separates body from mind. From the point of view of health practices, this duality shows up in the persistency of a technical model, which dissociates assistance from related social, cultural and affective realities, with ethical implications. Different conceptions should be applied so that this tendency could be reversed. At the same time, attempting to obtain them, looks like rowing against a powerful stream. The scientific model of health, in spite of the fact that it generates serious contradictions, has the power to be operative, instrumental and utilitarian. In this context, it is decisive to reassess the relation between science and philosophy. Canguilhem’s reflection on the sciences of life has a philosophical nature that is radically important to the prospect of transforming these sciences.

The concept of vital normativity, proposed in his 1943 thesis The Normal and the Pathological, is at the centre of Canguilhem’s work. He pointed out as a problem for biology the evidence that life has the property of creating norms to persevere. What would be the characteristic peculiar to life, from the most elementary kind, to perform some mode of discrimination between what is either favourable or unfavourable to it? Physical chemistry has not explained this irreducible attribute of the living being condition.

The same controversy can be found in the discussion on the relations between brain and thought. In a conference given in 1980, Canguilhem reaffirmed that an unconscious position of value was a fundamental feature of the living being and was at the origin of human thought. He considers it impossible to equate the brain with either an electronic machine (computer) or a chemical machine. In order to elucidate what thought is, one must take into account the idea of value, desire or will. Cognitive processes in living beings include some kind of subjectivity. Questions not answered up to now concerning either neurosciences or the definition of life testify to the up-to-dateness of Canguilhem’s perspective. Concerning neurosciences, one important question is the ambiguity between the exteriority of a mechanism and the interiority of the living being’s experience. The dualistic character of this ambiguity is related to the impossibility of a short and universal definition of life that could be accepted by the different sciences.

To deal with these issues changes would be necessary in the philosophical conception of what man is and what man’s relation to knowledge is.


The tribunal of modern life: The case of UZ Brussels in the light of Odo Marquard’s discussion of autonomy and theodicy

Devisch, Ignaas

Ignaas.Devisch@UGent.be
In 1999, in a hospital in Brussels, Belgium, a pre-natal test was performed. The test examined the enzymatic activity of an embryo, in order to prevent the birth of a child who would from the rather rare but all the more severe Sanfilippo syndrome. Since the parents already had a daughter with the Sanfilippo syndrome genetic disorder, they wanted to prevent their new child from being born with the same disease. The tests carried out at UZ Brussels came back negative and the parents decided not to abort the pregnancy.

Alas, when the child was born she was nevertheless found to have Sanfilippo syndrome which deeply disappointed the parents. In 2004 they took legal action, charging that the hospital had been negligent in failing to diagnose the handicap, thereby exposing the child to a life of suffering. In fact, their charge was not that the baby was disabled, but that the child was born at all. On top of that, the charge was brought in the child's name, and so effectively the child was suing against its own birth

At first glance, this only seems to be another example of Belgian surrealism, but there is much more at stake here; this situation demands moral understanding and philosophical analysis rather than political irony. Although several cases from all over the world are known, since it was the first time a Belgian court deliberated a so called ‘wrongful life’ case, the case was unique for Belgium. In the UK, Germany, the US or France, cases were already in court, but there is a general lack of consensus in jurisdiction: some courts do recognize it as a legal case, others don’t.

This remarkable and precarious case invites us to analyze the complex motives surrounding the court’s decision and the parents’ battle for justice. Of course, many perspectives are useful here to analyze the complexity of the case: ethical, philosophical, judicial, etc. In my presentation, I will use the theory of the German philosopher Odo Marquard to shed light on this unique case for Belgian society. In this case, not only has life itself become the subject of the judicial logic Marquard writes about; it is also an illustration of our continuous struggle to avoid evil or suffering in modern life In several of his articles and books, Marquard develops an interesting thesis which turns our idea of autonomy upside down: autonomy, he argues, is not an enlightened gesture against Christianity but an inherent motive of theodicy. In this gesture, I will argue with Marquard, we cannot deny that medicine and theology still meet, notwithstanding modernity. Consequently, the case of UZ Brussels does reveal an ‘old’ problem, rather than it simply witnesses of contemporary ethical dilemmas.


Concept of Governance in Dual-Use Research

Dubov, Oleksandr

dubovo@duq.edu
The rapid advance of life science within the context of increased international concern over potential misuse of findings has resulted in the lack of agreement on the issues of responsibility, control and collaboration. This progress of knowledge outpaces the efforts of creating moral and legal guidelines for detection and minimizing of the risks in the research process. There is a need to identify, analyze and address ethical and normative aspects of dual-use research.

This presentation will focus on issues of safety and global collaboration in life science research by highlighting the importance of openness, enabling policies and cooperative governance. These safeguards are believed to reduce the risks related to misuse of science while enabling the important research to move forward. The three necessary moves in addressing the issue of security in life sciences will be suggested: move from constraining to enabling types of policies, move from secrecy to openness and move from state-driven government to the governance of science.

The top-down approach to science results in contradiction between the global character of experiments and local character of rules, difficulty in predicting the outcomes of an experiment, dominance of political and ideological ideas in policy-making, and unfamiliarity of legislative bodies with science. In addressing the issue of security it is important to stress the necessity of the bottom-up approach to control of dual-use research that fosters peer collaboration and attempts to provide a framework within which scientists can operate. Enabling policies will result from efforts of promoting a culture of shared responsibility that recognizes a variety of stakeholders in research and involves them in the process of evaluation.

The failure to maintain openness in research may result in undermining the process of peer-evaluation while creating obstacles for progress and innovation. Maintaining openness carries the connotation of global cooperation and can be the way of upholding the component of social responsibility. Openness can be supported by international conventions on the topic of biosecurity.

There is a need for transition from the hierarchical role of state agencies as the main normative bodies to the networks with increased participation of non-governmental groups. In this manner delimitations between state and society, between experts and civilians should decrease, giving way to participation of multiple individuals and institutions in the process of policy-making. The implementation of the governance concept may result in establishing an international standing committee of science and ethics experts to overview dual use developments.
Narratives of Collective Suffering

Edgar, Andrew

edgar@cf.ac.uk
Elsewhere (Edgar 2007)I have argued that modernist narrative forms, that disrupt the sense of easy story-telling or meaningful and fulfilling endings, are uniquely appropriate as means for articulating the suffering associated with severe chronic conditions. In this presentation, I will develop these arguments in order to explore the nature of narrative and representation with respect to ‘disasters’, where large numbers of otherwise unrelated individuals, or where communities of various sizes are affected. Such events would include large scale traffic and other travel accidents, natural disasters and industrial accidents. By examining certain historical and recent cases, including the 1966 Aberfan mining disaster, and their representation in narrative and photography, the paper will seek to articulate criteria according to which successful and successful, or appropriate and inappropriate, forms of representation may be judged. It will be suggested that narratives and other forms of representation need at once to embrace the possibility of explanation and the ascribing of meaning to the events, and yet, in order to avoid easy, trivial or exploitative interpretation, to highlight the arbitrariness and ultimately meaninglessness of such events.
Ethical issues of dual-use research of concern in Switzerland

Engel, Sabrina; Elger, Bernice

sabrina.engel@unibas.ch
Dual-use research of concern (DURC) refers to research that may be used for good and harmful purposes. The term dual-use initially described security threats associated with the use of engineering and information technologies for military purposes. It was only recently that the dual-use potential of life science research entered the spotlight, when in 2002, merely months after the anthrax attacks in the US, scientists published how to re-create polio virus from scratch based on its published sequence. Their research initiated a controversial debate on biosecurity and biosafety threats associated with life science research. Since then further examples of dual-use life science research have provoked an international echo, including the recent case of novel man-made influenza strains. In November 2001, research teams from the Netherlands and the US announced to have mutated the bird flu virus yielding flu strains that combine the virulence of the bird flu and the transmissibility of the seasonal flu. Publication of these influenza studies has been halted due to fears concerning misuse of the virus by rogue scientists.

So far, US-based scientists and security experts have dominated the debate around DURC in the life sciences. Few ethicists have joined the discussion. An interdisciplinary examination of the topic using empirical data that goes beyond general ideas about DURC is urgently needed. The study I intend to conduct will collect the much needed empirical data on the awareness, views and perspectives of the various Swiss actors (and possibly international stakeholders) involved based on realistic case scenarios. The specific aims of the study are: (1) to identify national and international guidelines and ethics codes for DURC; (2) to collect information regarding the level of regulation of DURC in the life sciences at universities, scientific societies, and funding bodies, and (3) to study the awareness and views of the topic of DURC among scientists using concrete vignettes and real and hypothetical cases identified in the literature and through interviews. The collected data will help to ensure an accurate, accountable and evidence-based process for identifying appropriate governance options in Switzerland and offer a basis for a subsequent normative ethical analysis of the DURC dilemma.


Clinical Care of Human Life and its Reasonable Limits

Ford, Norman M

nmdford@gmail.com
Appropriate medical treatment and nursing care should be made available to all who need them. However, the duty of care is not absolute when it comes to demanding specific treatments to cure diseases or to prolong human life. The medical profession and the State are not bound to go to unreasonable lengths to provide every possible treatment regardless of cost, so long as basic comfort, care, nutrition and hydration are made available. The drawing of the line between where treatment should be given and where it need not be given is one of the most perplexing moral dilemmas that doctors and competent patients have to face. Often there is no one correct answer since only general principles are at hand to be applied on a case by case basis. Consultation among colleagues may facilitate the task of assessing the balance of likely benefits and risks of harm following surgery or other medical treatments. Doctors in some cases need to reassure their patients and relatives that surgical or continuing medical intervention is not in the best interests of their patients. An elderly competent patient may not want to have surgery: doctors and family members should respect this human and eminently personal decision.

Doctors’ unreasonable fears of being sued for malpractice do not contribute to making the best medical decisions:-- it is not in the public interest for doctors to be worried by such concern. States should have laws that permit due respect be shown to elderly patients’ wishes to refuse surgery or burdensome treatment without doctors being put at risk of legal action against them. The assumption should be that doctors, medical staff and nurses exercise their professional duties in a morally responsible way unless the contrary can be proved beyond reasonable doubt. Refusing disproportionate means of treatment is not to be confused with suicide or euthanasia. However, refusal by patients to take reasonable and readily available medical treatments that have a good chance of saving their lives does raise serious ethical concerns.

The use of sedatives is often ethically required for patients who are terminally ill. Keeping the dying aware is important unless they need medication or sedatives that may leave them unconscious for a period of time. However, the use of sedatives for patients close to death should not be considered terminal sedation – a term best avoided in professional health care circles.

Dying patients appreciate the opportunity to converse with others. The elderly in nursing homes who lack chances to talk with others die sooner. When relatives, friends, nurses or others greet these patients with a smile and a few cheerful words, their spirits and sense of dignity are lifted. Finally, the elderly may appreciate a visit from their own minister of religion or pastoral care worker – such visits may be a source of comfort and peace, especially for those who are nearing their end of life on earth.

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