Worst case bioethics



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Sunshine on the market – the reasonableness to shed light on medical providers relationship to medical industry

Sahm, Stephan

s.sahm@ketteler-krankenhaus.de
Physicians are powerful stakeholders in the medical-industrial complex. Patients owe much of the significant progress made in the diagnosis and treatment of disease to industrial research. It goes without saying that qualified co-operation between providers of medical services, most notably medical practitioners - be it in the field of general medicine or of highly sophisticated sections of tertiary medicine – and pharmaceutical industry is in the best interest of patients. Yet, interest-guided influence exerted by pharmaceutical industry had been shown to have tremendous impact on physicians´ decision-making. Profit-motivated inducement by the pharmaceutical industry may expose patients to considerable risks.

Efforts to shed light on that intricate relationship have not proven successful so far. In the US the sunshine act will come into effect in 2013 ruling every dollar spent for medical doctors to be published in the internet. Yet some authors take the view that the criticism levelled at the pharmaceutical industry as well as the call for transparency of the relationships between physicians and the industry are exaggerated. They hold big pharma being a success. Moreover they argue that undesired consequences of pharma’s activities are allegedly inherent in the underlying market environment shaped by politics. Eventually they think proposals made to control and eliminate pharma’s undesired influence on medical doctors will compromise the most welcome outcome of medical industry’s achievements.

In the debate about the morals of doctors´ relationship to industry it may be helpful to draw on philosophy of politics. In a historical perspective the freedom of the market had been eked out against an authoritarian or a dictatorial state. Now the situation has changed thoroughly. Today individual civil rights and liberties often enough do not have to be defended against encroachments by governmental authorities. Rather, it is incumbent on the state to create rules designed to defend the individual against infringements by overly powerful non-governmental institutions, in our case the medical-industrial complex.

In this paper this historical turn will be reflected. Impacts for the strategies to govern industry’s relationship to medical providers (including the respective institutions) are obvious.

In conclusion, it is the freedom to set limits where they are held to be appropriate which make a free society a distinguished one.
Masquerading liberal (?) eugenics and hidden agendas: patients in the maze of NRTs

Samuels, Varda



vardasam@aol.com
Does assisted reproduction merit a different level of protection than natural reproduction? Does funding allow the state greater control over individual freedoms? Israel has a dense maze of bureaucratic, statutory, regulatory and judicial actions that control individuals in their quest of unnatural family building. Purporting to create a favorable and supportive baby making environment it presents traits that upon diligent quest reveal suspect tyrant practices. Public money is spent abundantly on reproductive technology when predetermined criteria are met, while other related areas of medicine remain under much stricter budget constraints. At the same time individuals who do not fit the mold find themselves not only unfunded but unable to acquire status for their newborn where it should be part of his birthright. State authorities exhibit generosity towards reproductive quests of populations behind bars. The ability to control various aspects of reproduction through the perfection of IVF and adjacent medical technology has grown tremendously since its first success in 1978. The possibilities of curbing physical failures of the female and male reproductive tracts enable patients to exert greater control and benefit from a growing arsenal of treatment options in the process of baby making. These choices challenge society with ethical dilemmas as to what should be left to private individual decision making and where the state may intervene, not because it chooses to do so through legislative, judiciary or semi judiciary mechanisms but because such course of action is justified, consistent and streamlined with ethical rights discourse and cultural notions. This paper will explore the gaps in the Israeli maze that regulated NRTs; inconsistently made of lofty High Court constitutional interpretations, tight regulation, abundant funding and judicial and administrative decisions that are tough to reconcile. This paper will further compare the emerging regulatory model and culture to the US liberal models and British model of regulating reproductive technology and raise the question whether state intervention is justifiable in these cases. Looking at the spectrum of reproductive options this paper explores if there is room to adopt different standards for regulation and intervention based on their proximity to natural reproduction or whether in the age of personal autonomy such distinctions are obsolete as long as safety and dignity of all participating individuals is maintained. Applying ethical measures and not plain legal standards we critically examine the justification behind practices and the mandate given to legislative and administrative committees. The paper discusses specific examples where reproductive choices are supported and facilitated or curtailed. It attempts to clarify the hidden meaning and consequences these practices may have on future developments.
Oncologists’ criteria for end of life decisions in cancer: results from qualitative research

Schildmann, Jan; Tan, J; Salloch, S; Beiderwellen, P; Vollman, J

jan.schildmann@ruhr-uni-bochum.de
Background: The care for patients with cancer shows considerable variations with regards to provision and limitation of medical treatment during the last phase of life. Quantitative surveys indicate that the variation can not be explained fully by different preferences on side of patients or medical factors relevant for the individual case. In this qualitative study we explored the experiences and views of oncologists working in Germany and England regarding ethically relevant aspects of decisions about the continuation and limitation of cancer treatment.

Methods: Qualitative semi-structured interviews with physicians working in oncology in Germany and England were carried out. Interviews were audio taped and transcribed. Transcripts were coded by identifying major themes of the interviews using constant comparison, in order to examine similarities and differences between oncologists across the whole sample.

Results: 17 (Germany) and 12 (England) research interviews were analysed. Interviews varied in length between 27 and 73 minutes. Interviewees from both countries report a number of non-medical variables which may influence professional decisions about the offering or limiting of cancer treatment in advanced cancer. “Physician factors” mentioned by the interviewees encompass personal judgements regarding the priority of treatment goals as well as the amount of clinical experience. In addition “patients’ age and life circumstances” were perceived as influential with regards to treatment decisions in advanced cancer. Multiprofessional team discussions as well as the collection of more evidence regarding the outcomes of different treatment approaches in advanced cancer were cited as strategies to improve treatment decision making in advanced cancer.

Conclusion: This study indicates that physicians’ value judgements influence their decisions about offering or limiting cancer treatment in advanced disease. To make explicit value judgements relevant to healthcare professions’ recommendation as well as the collection of evidence relevant to the clinical aspects in advanced cancer may improve ethically and evidence based treatment decisions in advanced cancer.
Specifying the Precautionary Principle - A four-dimensional Approach

Schleidgen, Sebastian

sebastian.schleidgen@med.lmu.de

Moral philosophy faces severe difficulties as regards answers about how to act under conditions of risk and uncertainty. This especially holds for decisions about options with long-term consequences, more particularly about options which (may) bear negative consequences: in such cases the question arises how ethically justified decisions may be reached.

Regarding conditions under risk, decision theory provides numerous proposals for making the “right” decision, such as Bayes’ rule, the μ-σ-rule and the like. More difficult, however, are decisions under uncertainty, i.e. conditions under which either the identity of the options is not well determined and/or the consequences of at least some option are unknown and/or it is not clear whether information obtained from others, such as experts, can be relied on and/or the values relevant for the decision are not determined with sufficient precision (Hansson 1996).

A well-known proposal for coping with such conditions is applying the so-called precautionary principle (PP). However, to this day no philosophically satisfactory specification of the PP exists. Per Sandin in his article “Dimensions of the Precautionary Principle” (1999) analyzed the most common definitions of the PP and extracted their core elements in order to develop an abstract version of the PP: “If there is (1) a threat, which is (2) uncertain, then (3) some kind of action (4) is mandatory“ (Sandin 1999: 891). Starting from this understanding, it is possible to specify the PP by answering the questions of what are relevant (1) threats and (2) uncertainties that make an application of the PP necessary, as well as what are (3) the right actions with regard to these threats and with (4) what force are they to be mandated.

Regarding (1), I argue that potential threats have to have a certain minimum amount of impact in order to qualify for an application of the PP I then show how such amount of impact may be determined in particular cases. As regards (2), I analyze which kinds of uncertainties have to be dealt with when deciding about whether or not the PP is to be applied. (3), I propose a set of adequate actions that are to be taken depending on the given uncertainties. Finally, I claim (4) that these actions are mandated with a specific strength depending on the expected impact a potential threat as well as on the uncertainties at hand. By doing so, I will present a philosophically satisfactory specification of the PP, which makes it possible to deal with decisions about medical options with long-term consequences in ethically justified ways.
Born to be a donor. Ethical and anthropological perspectives on ‘savior siblings’

Schües, Christina

schuees@imgwf.uni-luebeck.de
The savior sibling is a child who is selected as a result of IVF and PGD/HLA screening and who is born to donate blood stem cells for her sister or brother who suffers from life threatening illnesses of the immune system, such as leukaemia or Fanconi anemia. Being born as a savior child means to serve as a therapeutic tool for the benefit of someone else.

The practice of creating savior siblings presupposes not only the medical technologies such as genetic diagnostic or transplantation technologies but also certain anthropological and ethical views about body sharing, the meaning of life, trans-corporeal gift relationships, and being born under certain conditions. The prenatal history of a donor child includes a selection procedure of corporeal criteria according to the body of its sick sibling and its possible dismissal if it would not have had the HLA-match. Thus, the child is only alive due to certain physical criteria. Furthermore, the medical, social and cultural practice of creating and using a “savior sibling” requires, as I will argue in my paper, a dualist conception of the human: Human bodies are divisible, the person remains untouched.

Creating and using another human’s body as a therapeutic tool means to disassociate the body from the mental and personal integrity. Without such disassociation neither the parents nor society could legitimize such use of savior siblings. This becomes particularly evident, if the transplantation fails. Without such dualistic thinking, we would then need to say that “the child” is a failure, not its tissues. Will the parents who tried to do everything for their sick child be resentful against the little savior child, if it was him or her as a person who didn’t do the job? If it was just the body which didn’t function as therapeutic tool, then at least the child is not to be blamed (subconsciously). The (first) meaning of the savior sibiling’s life is to have a therapeutic tool that can be shared and taken as a gift. This has conceptual consequences about the meaning of birth. Normally a birth can be understood as an unconditioned and non-reciprocal giving to a child; but in the case of a created savior sibling the donor child’s birth stands under the condition of having a (life long) corporeal gift for a sick child.
The trans-planted body as a gift relationship

Schües, Christina

schuees@imgwf.uni-luebeck.de
Organ and tissue transplantation presupposes that the human body is taken as a thing, which can be divided, shared, and given to other humans. Organ or tissue transplantation can be life saving; it certainly establishes a very personal body relation which bypasses national borders and political conflicts. Yet transplantation becomes also a cosmopolitical issue: Transplantation practices across political border establish life long gift relationships, which undermines national biopolitics and political conflicts. Yet to convert the gift relationship of transplantation into a peace making policy measure would wrongfully exploit human beings. I will argue that these bodily gift relationships and their operational medical structure may enhance peace but should never be instrumentalized as peace-keeping practice?
Ethics of Organ Transplantation revisited in view of recent face and composite tissue transplantations in Turkey

Ulman, Yesim Isil; Gurkan, Alihan; Tozun, Nurdan

yesimul@yahoo.com
Organ transplantation is a life-extending and life-saving medical procedure that improves the quality of life. By means of this high medical technology, a whole or partial organ or cells from a deceased or living person can be transplanted into another individual to replace the recipient’s non-functioning organ with the donor’s functioning organ. During the last decades, the science of organ transplantation has developed a great deal by the improvement of transplant outcomes, by the increase of transplantable organs such as kidney, heart, liver, lungs, pancreas that have been replaced successfully in many medical centres over the world (1). Recent remarkable cases of composite tissue allotransplantation for the purpose of reconstructing major portions or all of a number of severe defects, such as the hand and facial deformity have been glimmer of hope for many people lately (2). However, the gap between the demand for organs and the procurement of transplant material still remains wide despite the advances in organ transplantation technology, and organ donation is the key element of this issue which is highly based on ethical and psychosocial factors as well as medical and scientific ones.

Composite tissue allotransplantation is the transplantation of composite tissue for the purpose of reconstructing major portions or all of a number of severe defects, such as the hand and facial deformity (3). Pioneering cases of this revolutionary technique were carried out in France (2005), China (2006) and USA (2007-2009). Clinicians and researchers from Turkey have taken part in the medical teams realizing experimental studies especially in United States just from the beginning (4). This fact provided them with competence and eminence to carry out the procedure in Turkey. The three successive allotransplantations in the foremost medical centres in Turkey at the beginning of 2012 aroused wide attention of the medical and academic circles by the high technology used in these pioneering transplantations. The medical and surgical teams of these highly technological and risky practices are hailed by the public at first by their eminence and zest. However they triggered a broad public debate in Turkey due to the post-operative loss of one of the patients, the sensational news at media breaching confidentiality of the patients and their families, the infringement of the legislation per se, consequential cancellation of the transplantation licence in one hospital.

The aim of this presentation is to deal with composite tissue and facial transplantation regarding the recent revolutionary examples in Turkey by dragging attention to the ethical challenges of the procedure focusing on the issues of informed consent, confidentiality, balancing benefit and harm, responsibility of the media and the promotion of organ donation without missing to remunerate these major achievements from Turkey in the science of transplantation.
The proliferation of genetic analyses available to the public

Shandera, Wayne

shandera@bcm.edu
In the last 3 years, the availability to the public-at-large at reasonable cost of genetic analysis has surged. These tests help answer questions about genetic origin, parentage, health risks, and carrier state for diseases. At least 3 types of analyses are widely used and prototypic examples are given.

The first was a genomic analysis by a facility entitled DNA Tribes which compares 14--28 genetic markers for a client versus those acquired by global control populations considered stereotypic of that region historically. Thus, cohorts of 100-300 persons among over 1000 populations are analyzed and participants are given a report which identifies a region of the world where their DNA samples are most similar. The results often fail to correlate with familial heritage and the company states that their results determine “deep heritage.” Limitations include the histories given by the control participants, the small sample sizes of some populations, and the inability to test the many population cohorts in the world. Clients may fail to understand a “deep heritage” and the number of markers limits usefulness in paternity or familial testing.

A company from California, 23 and me, provides a combination of marker analysis using several thousand single nucleotide polymorphisms (SNP) and published data on health risks of given SNPs. A large database enables members to compare, identify themselves (optionally) and contact one another. The results do not include diseases where a carrier state (such as Huntington disease) could compromise overall health and some disease risk states include polymorphisms that affect only a fraction of those affected (eg Alzheimer risk by lipoprotein analysis). The advantages are the greatly enlarged number of DNA markers, the associations with health (many need further confirmation, and the misunderstandings by many has caused some states to prohibit usage in medical settings or insurance reimbursements).
A third type of analysis is provided by the largest DNA SNP marker company, Family Tree DNA, from Texas, where the large number of clients and markers tested attracts in particular adoptees who can use designated haplogroup markers to determine the genetic origin of a small segment of their DNA. An option for limited health analyses is also available, but real advantages of large testing services are the ability to locate biologic kin and to confirm suspect relationships.

Can one envision a worst-case scenario amid the wonders of such genomic medicine? The widespread dissemination of genomic data will potentially allow for analysis of predisposition toward future unidentified disease states, determine genetic predilection toward medical syndromes and behavioral states as marker knowledge is increased, and expose one to the potential for future discriminatory practices, affirmative action policies, and arbitrary decision making based on discrete genetic markers. This dissemination thus requires validly informed consent (difficult for nonmedical participants), release from future arbitration, and finally a willingness of participants to embark on the risks associated with disclosure of unknown, future determinants.


Why treat a worst case scenario?

Shandera, Wayne

shandera@bcm.edu

In November, 2011, as a provider to the HIV-infected I was asked to evaluate an AIDS patient sent in from a nursing home. The patient was not ambulatory and the nursing staff asked that I come to a treatment area where bed-bound patients were supervised.

The patient was a 32-year-old Kenyan man with contractures throughout his extremities. He was sent to monitor of antiretroviral therapy. Both his HIV viral load and his level of immune restitution showed good control of infection. Nonetheless, I was struck by the gravity of his underlying disease and thought it might be due to opportunistic infections.

The patient was mute, responded only to severe pain, showed no visible awareness of his surroundings and according to the notes this scenario had been the case for three years at the nursing facility. His vital signs were stable, his contractures were chronic, there was no asymmetry to his neurologic findings, and he showed no acute cardiac, respiratory, or abdominal findings.

It was noted that he emigrated from Kenya in 2001 at age 22. He was HIV-positive on admission into the United States. Because US policy at that time forbade such admission, it was not apparent how he was able to enter the country. Eight years after entry he was involved in a motor vehicle accident and sustained a subarachnoid hemorrhage render ding him permanently aphasic and paraplegic. His care was contracted out to a nursing home in a suburban Houston community where the notes revealed that he never had family or friends visit. I renewed his HIV medications and allowed him to return to what many would consider a near-vegetative existence without significant quality of life.

This case represents the worst of many scenarios in American medicine. Despite a very strident political arena, many number of dedicated social and religious organizations attend needs of the typically hard-working undocumented but these are usually for Latin American immigrants or for patients whose emotional and financial distress are not both catastrophic.

It was my impression that his visits every three months might be his only chance to leave the nursing facility and his limited time at medical visits a significant change in his routine. To us as providers, he represented the type of patient that made one immediately consider “do not resuscitate” orders but at the same time assess our role as providers to patients who undergo in life transitions. These transitions for him included the burdens associated with immigration, a new HIV infection, a near-vegetative state and chronic nursing care in a land remote from his origin where no family or friends exist to help him.

One searches religious background or philosophy systems in how to address such a patient. In the end it is only a willingness to serve a very compromised patient such as this fellow that gives sustenance, purpose, and definition to our work as physicians.


The Therapeutic Triumph: Making Poor Claims and Offering a Revised Conceptualization to Justify Embryo Selection

Sperling, Daniel

dsperling@mscc.huji.ac.il

 

The paper describes and critically evaluates the medical/social distinction as used in the context of embryo selection through pre-implantation genetic diagnosis (PGD). According to such a distinction, while embryo selection for medical purposes, for example preventing the birth of a child with severe genetic disease, may be ethically justified, screening and selection of embryos for social reasons, such as the implantation of an embryo of specific gender or that carries the gene responsible for intelligence, should not be allowed. The paper challenges the automatic and repeated use of such a distinction in ethical debates concerning PGD. It is argued that existing justifications for the medical/social distinction seem not to support the conclusion that such a distinction should determine in a conclusive way whether embryos should be returned for implantation or misused by genetic parents. The article further analyzes alternative proposals to the medical/social distinction in light of which embryo selection should be ethical and concludes with the author’s own proposal for ethical reasoning in the area of embryo selection. Under such a proposal, any embryo selection that would, on balance, increase the variety of potential life plans for the future child from which she will be able to choose is prima facie ethically justifiable.


Who Told You that You Were Naked? Privacy and Whole Genome Sequencing

Sulmasy, Daniel

dsulmasy@medicine.bsd.uchicago.edu
The era of the $1,000 genome is almost a reality, bringing pressing ethical issues to the fore. Over the last two decades, patients and members of the public who have been asked to participate in genetic research, or who have been queried about their attitudes regarding potential clinical applications of their genetic data, have expressed special fears about the privacy of genetic information, a phenomenon sometimes called “genetic exceptionalism.” Critics readily point out that adverse consequences such as discrimination and stigmatization are not unique to genetic data. Arguments to support the claim that genetic information is special have emphasized that these data simultaneously contain information about our present states, our potential futures, and our relatives.

In this paper, I first define privacy as a limit on the access others have to us, generally either regarding one of two spheres: (1) our persons and property, or (2) regarding information about us. I argue that our genomes are not our property in the sense of owning our chromosomes. Nor can genomes be considered as intellectual property that an individual owns. Further, I argue that genomic information is not uniquely sensitive with respect to its potential misuse.

I argue, instead, that part of what makes genomic information seem special is that it uniquely occupies both spheres of privacy simultaneously. To know a person’s genome is both to have knowledge about that person and to have knowledge of that person. Genomic information, in part, constitutes who and what we are. Genomic information can partly predict our futures, but also represents our futures encoded in us. Genomic information provides an embodied, physical link to our ancestors and our relatives. Genomic information encodes some of our endowments, but also our mutations, our vulnerabilities, and our finitude. While we might soon be able to tinker at the edges, in a general sense our genomes are not chosen but are given to us, like the rest of our bodies. In a metaphorical sense, then, to gaze upon a person’s genome is to see that person “naked,” and such nakedness warrants special protection. It is these qualities regarding genomic information that seem to justify the public’s common view that genetic information is special. Researchers and clinicians who regard such concerns as irrational or ignorant run the risk of alienating potential research subjects and patients and of blunting the potential for great societal and individual good.
Does germ-line therapy harm to future generations?

Tuono, Marco

tuono@unive.it
An ethical reasoning interested in germ-line therapy can not ignore the impact this attempt of treatment has regarding future generations. If one interpretative line could stress the fact that they are voiceless (future generations, some moral philosophers maybe could argue, can not give an informed consent about the altered genome they will receive), on the other hand we must emphasize that the focus here is on the right people should have to inherit an unmodified human gene pool. The implicit thought that substantiates the position we investigate is the following: living persons are not the only field that this reasoning covers: the horizon extends up to embrace what unites individuals through time: the species. So the right above mentioned concerns, at the same time, two subjects. The individual and the species are both, in this light, in the condition to claim what could be called a “natural structure”, which is, indeed, common to the ontogenetic and the phylogenetic level. In other words, the argument we consider, proposing the ban to germ line therapy, is divided in two sectors that, however, remain connected sharing the key point based on the premise that the DNA must remain unaltered - which conducts directly, as noticed before, to the right to ensure the identity (genomic and personal or concerning the species) as unchanged.

Firstly, concerning the individual, an equivalence between the pool of genes and a person’s personal identity could be seen. Herein, the DNA plays a prominent role leading the lives of persons. According to this form of reductionism, the person is conceived merely as the product of his or her genes.

Secondly, what is said about the individual should be referred to the entire species. In other words, the latter has the germ line just as individuals have.

We can respond to these positions that 1) seeing a risk in terms of individual freedom linked to born with a modified genetic heritage means adopting a deterministic point of view as regards to the fields of biology and genetic. 2) In the narrow sense, the pool of genes is an abstraction. Because of its internal dynamism, the evolutionary process is unmanageable, therefore modifying the DNA does not mean to orient it removing the freedom of the individual or the unpredictable changes of the species. Thinking in this way implies owning a merely statical conception of the DNA, while its essence, so to speak, is the constant flux.

To conclude, looking from the topic of the ethical problems connected to our moral duties related to future generations, but similar consequences can be traced for example considering the topic of human cloning, our conclusion is that the refusal of applying the engineering technique in attempt to treat genetic disease is not acceptable. A prohibition of this kind consists in an oversimplification because it can be founded only on a deterministic (once referred to individuals) and statical (referred instead to the species) idea of the DNA.
Is Contraception Health Care? An ethically controversial paradigm shift in US policy and practice with regard to reproductive technologies proposed under the Affordable Health Act.

VanDyke, Amy

avandyke@consolidated.net
The Patient Care and Affordable Health Care Act (AHA), the most recent attempt at universal health coverage in the US, has accepted and promulgated a paradigm shift proposed by the Institute of Medicine (IOM) with regard to the inclusion of various reproductive health technologies and coverage for such services. A broad spectrum of women’s preventative services slated to go into effect in August 2012 now includes the provision of contraception and sterilization, among other controversial reproductive technologies to be covered by all employers, including faith-based hospitals, colleges, universities and social service agencies who offer health care insurance to employees. Amidst this recent announcement from the US federal government’s department of Health and Human Services came significant backlash from conservative and faith based groups, including the Catholic Church who have until now been exempt from provisions such as these. The fight has been posited as one of constitutional religious liberty versus medical standard of care to address women’s reproductive health needs. While some version of this preventative services mandate is on the books in 28 states it did not become widely controversial until the mandate became part of the AHA. Thus in some parts of the US this issue has already been addressed by Catholic Bishops and other faith-based institutions. Moreover, in Catholic countries such as Italy it appears that this particular question has already been adequately resolved. From an international perspective the dilemma in the US seems puzzling.

An accommodation has been put forth by the federal government which is meant to serve as a compromise between faith-based organizations and the federal mandate. The compromise has not been universally accepted. Presently, the Obama Administration is refusing to compromise further and many, though not all, faith based employers are refusing to accept the accommodation as sufficient. This ethical dilemma among religious liberty, delineating a medically appropriate standard of care, and individual conscience has further divided many within US Catholics. In fact, many within the US on both sides are suggesting that this situation can only be decisively resolved by the US Supreme Court.

Additionally, since the announcement, some have sought to shine a light on areas of alleged hypocrisy found within Catholic Health care facilities which presumably weaken claims to conscience of Catholic Hospitals with regard to the contraceptive mandate. Reports which allegedly prove Catholic hospitals are providing other morally illicit reproductive technologies have come to the fore. In light of the upcoming election this issue seems to have taken an even more divisive turn; one whose outcome may be altered by the election in November.

This presentation will begin to address the seemingly confounding circumstances in the US which entrench each side in this ethical debate while other countries have successfully dealt with faith and the use of various reproductive technologies. The presentation will take into consideration Catholic moral teachings on reproductive technologies, secular medical standards of treatment and the on-going political struggle to determine what will be included and excluded from US universal health care initiatives.


Institutionalizing a Diagnostic System which Pathologizes Typical Human Emotional Responses: Will pharmaceutical companies benefit and will the health of the public bear the burden?

VanDyke, Amy

avandyke@consolidated.net
The Unites States is poised to adopt the American Psychological Association’s new Diagnostic and Statistical Manual version five (DSM-5) for identifying those with mental health disorders beginning in May 2013. This improved diagnostic manual may prove to be overly sensitive, including as deviant those who should be rightly excluded. The adoption of this evolved diagnostic tool will likely give rise both to the inappropriate labeling of individuals as well an increase in prescriptions written for psychotropic medication such as anti-depressants which previously would not have been warranted.

The new DSM-5 has been widely criticized in the US and internationally for pathologizing human emotions, reactions, and behaviors which have until now been seen as normal. The result of which is feared to be substantially greater numbers of individuals being diagnosed with a mental health disorder. Moreover, research shows that the US is more likely than other countries to depend on pharmacological interventions to treat mental health disorders. Almost concurrently, the Patient Care and Affordable Health Act (AHA) will require all mental health providers to utilize the ICD coding system, developed by the World Health Organization (WHO) and more widely accepted across the globe for diagnosing mental health disabilities and other physical disorders. The ICD system and the DSM system have, however, developed in parallel ways across the years with each influencing the development and use of the other.

Given the preference in the US to prescribe psychotropic medication in response to diagnosis, it should be asked both who stands to reap the greatest gain from this new diagnostic system and who stands to reap the gain of continuing with parallel diagnostic tools. It appears that an increase in the number of people diagnosed with mental health disorders previously deemed non-pathological will facilitate an increase in those eligible for treatment with a variety of psychotropic medications thereby benefitting the pharmaceutical industry perhaps to the detriment of the individual seemingly inappropriately labeled and treated based upon an overly inclusive diagnostic system.

This presentation will identify the ethically troubling proposed changes and will address how the changes proposed in the DSM-5 will hyper- pathologize normal emotions such as grief which may cause harm to those newly diagnosed by being labeled with a mental health disorder and undergoing unnecessary interventions while simultaneously benefitting the already robust pharmaceutical industry currently disproportionately relied upon for the relief of symptoms in the US. Given the historical evidence of parallel evolution of the DSM and the ICD tools, the international community should attend to the outcome of this ethically concerning dilemma as the potential for international ramifications may include a greater international dependence on the pharmaceutical industry to ameliorate mental health disorders. This is a situation of worst case diagnostics with potentially far reaching consequences.


The Role of Pandemic Plans in Ethical Preparedness & Resilience

Viens, Adrian

adrian.viens@gmail.com
Pandemic preparedness planning, as an instance of general disaster planning and response activities, focuses on how particular institutions and officials will seek to manage serious viral outbreaks within their community. One prominent form of planning in anticipation of the emergence of a pandemic threat are pandemic preparedness plans created by national governments. In addition to outlining the medical and legal guidelines/processes to be followed during a pandemic, a large number of plans also include ethical considerations to be considered in informing policy and action. This inclusion reveals a recognition that not only will ethical considerations be of central relevance to pandemic planning, but that inclusion of ethical guidance will contribute to a more effective response and promote greater resilience. In addition to national pandemic plans, supranational and international documents, such as the WHO’s Addressing Ethical Issues in Pandemic Influenza Planning and EUR-OPA Major Hazards Agreement Ethical Principles on Disaster Risk Reduction and People’s Resilience to Disaster also exist with the same objectives. Unfortunately, there is little or no evidence that these plans/documents contribute to ethical preparedness or resilience, nor even that public officials have or will make use of the ethical principles listed to guide their conduct or decision-making processes. It is argue that, at least in their current form, most pandemic plans cannot be said to be properly ethically action-guiding, nor should they be thought to provide some metric by which the level or quality of ethical preparedness or prospective resilience within a community can be assessed. The mere inclusion of ethical considerations within these plans or documents is not a sufficient indicator of ethical preparedness or resilience. A great deal more work – in terms of research, development and evaluation – must be done to better understand and integrate ethical guidance within pandemic planning specifically and risk and disaster management generally.
Personalised medicine: Priority setting and opportunity costs at an international scale

Vollmann, Jochen; Schildmann, Jan

jochen.vollmann@ruhr-uni-bochum.de
Personalised medicine currently gains considerable attention and evokes a multitude of hopes in modern medicine. The identification of genetic markers enables more precise diagnoses, targeted therapy and more specific statements about the personal prognosis. Often used as synonym for future medicine, personalised medicine promises to be better, cheaper and more "personal" than current medicine.

However, big achievements in basic genetic research do not mean necessarily better personal treatment for the majority of patients in clinical medicine. It is more likely that future clinical success in targeted therapies will be limited to subgroups of patients, e.g. patients with a specific breast cancer, only. In contrast, a considerable part of patients will have no personal benefit at all.

In fact so called “personalised medicine” is a research and economy driven adventure governed by global stake holder e.g. pharmaceutical and biotechnology companies. Since economically independent and publically funded research is missing widely, these private interest groups are setting the research agenda following their commercial interests. In this context and with the record of current cost development of new cancer drugs in targeted therapies the promise of cost saving and cheaper health lacks any evidence.

Furthermore “personalised medicine” is associated with ethical problems like priority setting and opportunity costs in solidarity based public health care systems, social and global justice as well as ethical questions of autonomy and of beneficence of patients. It is an issue of debate how societies and public health systems may influence the development of the research agenda regarding the priorities for future health care. We argue that in case of a lack of critical reflection on the current focus on “personalised medicine” public health care will be confronted with modern, highly specific and expensive diagnostics and treatments, which will serve subgroups of patients only. At the same time research in other fields of clinical medicine, comparative effectiveness research and public health, which could serve more than some subgroups of patients, remain underfunded.


The Two Arms of Openness: Responsibility and Creativity in Medical Professionalism

Weinberger, Hagar; Barilan, Michael

hagar.weinberger@gmail.com
The ethos of medical practice is historically expressed in the language of excellences (i.e. virtue), especially those that inspire responsibility (on behalf of the professional) and trust (on behalf of the public); contemporary milestone documents of medical professionalism, such as the “Medical Professionalism Charter” and the ACGME (The American Council for Graduate Medical Education) underscore a commitment to constant improvement in medical research, education and the standard of care. Thus the concepts of innovation and excellence are invoked in tandem. However, medical innovation also presents potential harm to patients. However, innovation presents some challenges to medical ethics. The image of the brilliant physician applying her genius by the bedside is as appalling as it is appealing. Experimenting with novel treatments (pharmaceutical, surgical or other) always entails some unknown risk to the patient even when ethical boundaries are observed – and medical history is littered with examples when these boundaries were violated.

Thus, physicians need to negotiate these seemingly conflicting demands: to act in the best interest of the particular patient, and to promote the profession as a whole. Specifically, situations of extreme risk and limited resources – such as disaster relief – may push or even require physicians to improvise in their practice. In this paper we attempt to explicate this dilemma by developing a joint account of creativity and responsibility. We argue that this conceptualization of creativity should count among the second-order virtues of medical professionalisms, which organize first-order virtues such as compassion and skill.

Our argument follows psychologist Robert Sternberg's conceptualization of creativity, according to which creativity is a composite of (1) the perception of reality as changeable, (2) the ability to discern potentials for change, and (3) the ability to identify which of these potential is valuable. Creativity thus defined and responsibility it its conceptualization as a meta-virtue both require the somewhat paradoxical traits of embeddedness in reality on the one hand and willingness to alter it on the other, suggesting a conceptual link between the two. Responsibility may serve in a guiding role, directing creativity towards valuable alternatives.
Ethical challenges of a prolonged hunger-strike

Weingarten, Michael

micky.weingarten@gmail.com
Recently a young man, detained in prison without trial under security regulations, was admitted to hospital after 52 days of hunger strike. He agreed to cooperate only after an external doctor representing a human rights organization was allowed to accompany his treatment. As his condition became increasingly critical he progressively accepted treatment with infusions containing only minerals, then thiamine supplementation, and finally, intravenous glucose. When partial parenteral nutrition (PPN) was offered he consented on condition that this be formally defined as essential treatment, and not a break of the hunger strike. Deliberation on this issue involved Physicians for Human Rights - Israel, the International Committee of the Red Cross, the hospital ethics committee, and international advisors. A document was presented to the patient stating that in the circumstances of his particular case, PPN would be deemed to be essential medical treatment and not a breach of his hunger strike. Nonetheless the patient refused treatment pending a High Court of Justice hearing of his appeal against detention. A few hours later, the court ruled to shorten his detention, and he promptly ended his hunger strike, on the 66th day. Among the many ethical issues arising from this case, we will focus on some salient points - Creation of a therapeutic space in the context of detention without trial; Defining and protecting confidentiality in the chaotic nexus of a hospital bed surrounded by prison warders, medical students, lawyers, human rights activists, politicians, the media, the prison medical service representative, and family members, with varying degrees of access to information and to the patient; Empathy and patient advocacy in the face of the dramatic political asymmetries and theological differences between patient and doctor (a West Bank Palestinian spokesman for the Islamic Jihad, and an orthodox Israeli Jew); Simultaneous cooperation with both the hospital staff and the prison medical service; Manipulation of the body and its medical care in the service of political goals, and how moral agency for such action is distributed between the patient, the doctor, and the State; The epistemological quandary of the possibility of providing a medical as opposed to a political definition of what constitutes breaking a hunger strike. The status of PPN in the treatment of hunger strikers – a topic that seems not to have been discussed previously in the literature.
Transnational Pharmaceutical Corporations’ Moral and Legal Human Rights Responsibilities for Access to Medicines

Wu, Chuan-Feng



f1000@ms18.hinet.net
For decades the lack of access to needed and affordable medicines has unduly burdened developing countries worldwide. To highlight the acute need for international assistance in support of the sick’s and poor’s medical plight, in addition to the state’s human rights obligations to fulfill the right to access medicines, scholars have manifested increasingly visible alarm over the activities and enormous power of transnational pharmaceutical corporations (TNPCs). However, requiring TNPCs to assume human rights responsibilities in relation to access to medicines is replete with conceptual difficulties because human rights law was traditionally thought to apply almost exclusively to states, and, only in limited cases, to individuals and corporations. In effect, as far as the right to access medicines is concerned, TNPCs have only moral responsibilities to facilitate pharmaceutical accessibility, and their normal business operations and voluntary philanthropy form the main corporate contribution to the preservation of this right. However, it is misleading to impose only moral responsibilities categorized in the “can” (rather than “ought to”) dimension on TNPCs to improve access to medicines regardless of heterogeneous contents of the right to access medicines. In addition, corporate philanthropy cannot provide a consistent response to right-to-access-medicines violations, especially in pandemics and disasters. Therefore, TNPCs’ human rights responsibilities for access to medicines should not all be subject to the criterion of “morality”, but should be differentiated and prioritized based on the contents of the right to access medicines. Based on the biomedical health model and Norman Daniels’ theory of just health care, in which “function” and “opportunity” hold a precise meaning thus are readily measurable, I propose that: (1) TNPCs “ought to” fulfill the right to access medicines (soft-law human rights responsibilities) when and only when these medicines are necessary for restoring or maintaining “minimal health” (including life-saving) without which an individual cannot be a free and equal member of society and the right loses its significance, and (2) TNPCs “can” voluntarily fulfill the right to access medicines (moral human rights responsibilities) for common or insignificant physical and mental dysfunctions or for pain-killing that go beyond the level of “minimal health”. Two reasons prompt this differentiating hierarchy of TNPCs’ human rights responsibilities. First, since life-saving medicines are closely related to the right to life that is not only non-derogable but also holds jus cogens status, and since international precedent reveals that corporate liability for jus cogens violations should be contemplated under international law, it is important to impose soft-law (rather than moral) responsibilities to promote access to these medicines on TNPCs. Second, since minimal health defines an individual’s essential capacity to function as a free and equal member of society and to obtain fair shares of the normal range of opportunity to pursue his or her own good ends of life, TNPCs, with increasing power and capacity to affect healthcare policies and/or pharmaceutical patent policies, “ought to” enhance access to minimal-health-maintaining medicines, especially in light of the inability of public sector to protect the right to access medicines in developing countries.
Disclosure of HIV+ Status to Patient’s Family: Law, Ethics, and Public Health

Yang, Hsiu-I, Rei,Wenmay

hiyang@ym.edu.tw

Due to the discriminative nature of AIDS, keeping HIV+ patients confidentiality is of critical importance and should be strictly followed as a prima facie ethical obligation by all health care providers. However, when the patient tested HIV+ is incompetent, can and should the result be disclosed to his family? There are various ethical, legal and public health controversies concerning this question. First, as a surrogate decision-maker, patient family might need to know the exact diagnosis to make a sensible health care decision for the patient’s best interest. Moreover, in the case of patient incompetence, the family becomes the only information source for the public health officer to trace the potential infector for AIDS control. In addition, HIV+ patient family might have an independent right to know the origin of infection so that they can exercise their legal right to sue the person/institution that negligently or intentionally transmitted HIV to the patient. Despite of all these seemingly legitimate reasons, it should be acknowledged that disclosure of AIDS diagnosis to an incompetent patient family may cause serious harm to another HIV+ patient’s confidentiality.

This paper starts with a real case in Taiwan where a HIV+ person (hereinafter Mr. P) was harassed, blackmailed, and criminally accused by his boyfriend’s father, whose 22-year-old son was died of AIDS-related brain tumor. After being told by his son’s doctor of the cause of the disease, the heart-broken father carefully investigated and finally located Mr. P a possible infector. Without precaution, the local health officer confirmed Mr. P a HIV+ carrier, and then his nightmare began. Raged and grieved, the father takes for granted that his son was killed by Mr. P’s intentionally transmission of HIV virus. In addition to civil claim and criminal charges against Mr. P, this angry father made Mr. P’s HIV+ and gay status public to his parents, co-workers, and employer, and all these cause huge pain and suffering for Mr. P. Though Mr. P did contract HIV earlier than his dead partner, a genetic test revealed that each of their HIV viruses was from different sources.

Who should be responsible for Mr. P’s miserable treatment? Is it ethical for the treating doctor to disclose AIDS diagnosis to the father at the first place when the brain tumor was in end stage and knowing AIDS does not help in making medical decision but in applying for financial support? Can the AIDS reporting system be more sensible to infector’s privacy protection? How to assure that a HIV+ person take good steps to prevent his sexual partner from affected? This paper will examine all these issues in detail and try to propose an ethical guideline to incorporate HIV+ patient right to confidentiality with public interest of AIDS control.


Human Cloning: Between a crime against Humanity and the Common Heritage of Mankind

Zuckerman, Shlomit, Barilan, Michael



shlomit.zuckerman@gmail.com
On 2005, the general assembly of the United Nations adopted its Declaration on Human Reproductive Cloning (United Nations Declaration on Human Cloning, GA Res. 59/280, Annex (March 8, 2005)). The declaration followed two decades of lively discussion among ethicists in the medical and scientific community regarding the warranted regulation of HRC. Throughout this time, while numerous scholars strongly opposed the very idea of HRC, other thinkers supported its conduct or even encouraged scientific endeavor in this area. People from both camps, however, agree on two things. The first is the need for an appropriate mechanism for regulation of HRC. The second is the imperative role international law should play in the legal regime of HRC. The goal of this paper is to critically examine the methodology and tools of International Law that have been suggested for the regulation of HRC, both contextually and in terms of the likelihood for successful enforcement. In particular, we will discuss and analyze three models. According to Annas and his colleagues, HRC is a crime against humanity (Annas GJ, Andrews LB, Rosario MI (2002) Protecting the Endangered Human: Toward an international treaty Prohibiting Cloning and inheritable alterations, American Journal of Law and Medicine, 28:151-178). As such, it should be outlawed by an international treaty. Luban, in response, states that cloning is a crime against humanity only if we regard genetic uniqueness a defining aspect of humanity (Luban, David (2004), A Theory of Crimes against Humanity, Yale J. Int'l L. 29: 85-167). However, because cloning does not violate aspects of humanness pertaining to our political nature as required in international legal instruments it could not be considered as a crime against humanity. Finally, we will offer an alternative view of the practice of HRC, relying on the doctrine of Duty Based Common Heritage and its application to the human genome (Ossorio PN (2007) The Human Genome as Common Heritage: Common Sense or Legal Nonsense? The Journal of Law, Medicine & Ethics, 35(3): 425-439).


PARTICIPANTS


  1. Ahmad, Ayesha, a.ahmad@ucl.ac.uk

  2. Bar-El, Yaron, anatb@yvc.ac.il

  3. Barilan, Michael, ymbarilan@gmail.com

  4. Barnea , Rani, ranibarnea@gmail.com

  5. Bateman, Simone, simone.bateman@parisdescartes.fr

  6. Birenbaum-Carmeli , Daphna, daphna@research.haifa.ac.il

  7. Borgo, Melania, m.borgo@studenti.uninsubria.it

  8. Borovecki, Ana, abor@mef.hr

  9. Braude, Hillel, hillel.braude@mcgill.ca

  10. Bremer, Anders, Anders.Bremer@hb.se

  11. Brudney, Daniel, dbrudney@uchicago.edu

  12. Cabrera, Laura, laura.cabrera@unibas.ch

  13. Caenazzo, Luciana, luciana.caenazzo@unipd.it

  14. Czeresnia, Dina, dina@ensp.fiocruz.br

  15. Decker, de, Theo, theo.de.decker@telenet.be

  16. Devisch, Ignaas, Ignaas.Devisch@UGent.be

  17. Dubov, Alex, dubovo@duq.edu

  18. Engel, Sabrina, sabrina.engel@unibas.ch

  19. Ford, Norman M, nmdford@gmail.com

  20. Gordijn, Bert, bert.gordijn@dcu.ie

  21. Grunwald, Armin, armin.grunwald@kit.edu

  22. Gunderson, Martin, gunderson@macalester.edu

  23. Gustavsson, Erik, erik.gustavsson@liu.se

  24. Hayry, Matti, matti.hayry@helsinki.fi , matti.hayry@manchester.ac.uk

  25. Heavey, Patrick, patric777@ireland.com

  26. Horn, Ruth, ruth.horn@bristol.ac.uk

  27. Jaarsma, Pier, pier.jaarsma@liu.se

  28. Jenkins, Simon, SPJ029@bham.ac.uk

  29. Kakuk, Peter, kakuk.peter@sph.unideb.hu

  30. Kampits, Peter, peter.kampits@univie.ac.at

  31. Katzenelson, Edna, ednak@post.tau.ac.il , edna-k@013.net

  32. Khateb, Ismael, ccfp_ak@yahoo.com

  33. Keane, Evelyn M., lynnmkeane@eircom.net

  34. Kobert, Klaus, Klaus.Kobert@evkb.de

  35. Kramska, Magdalena, magdalenakramska@gmail.com

  36. Lavi, Shai, slavi@post.tau.ac.il

  37. Levitt, Mairi, m.levitt@lancaster.ac.uk

  38. Lin, Shin-Rou, shinrou@nctu.edu.tw

  39. Liu, Hung-En, markliu8@gmail.com

  40. Mahoney, Edward J., emahoney@smcvt.edu

  41. Nachshon, Akiva, medethics1@gmail.com

  42. Neiders, Ivars, Ivars.Neiders@rsu.lv

  43. Nepi, Leonardo, l.nepi@lumsa.it

  44. Oduncu, Fuat, fuat.oduncu@med.uni-muenchen.de

  45. Ozaki, Kyoichi, frei787562@docomo.ne.jp

  46. Papagounos, Georgios, gpapagounos@ath.forthnet.gr

  47. Pegoraro, Renzo, renzo.pegoraro@fondazionelanza.it

  48. Ram-Tiktin, Efrat, Efrat.Ram-Tiktin@biu.ac.il

  49. Ravitsky, Vardit, vardit.ravitsky@umontreal.ca

  50. Rehmann-Sutter, Christoph, rehmann@imgwf.uni-luebeck.de

  51. Rozynska, Joanna, jrozynska@gmail.com

  52. Ruiz-Canela, Miguel, mcanela@unav.es

  53. Ruzza, Raffaella, raffaruz@gmail.com

  54. Sahm, Stephan, stephan.sahm@t-online.de

  55. Sawada, Aiko, aiko@lime.ocn.ne.jp

  56. Schleidgen, Sebastian, sebastian.schleidgen@med.lmu.de

  57. Schuees, Christina, schuees@imgwf.uni-luebeck.de

  58. Shandera, Wayne X, shandera@bcm.edu

  59. Sperling, Daniel, dsperling@mscc.huji.ac.il

  60. Sulmasy, Daniel, dsulmasy@medicine.bsd.uchicago.edu

  61. Takala, Tuija, tuija.takala@helsinki.fi

  62. Tuono, Marco, tuono@unive.it

  63. Ulman, Yesim Isil, yesimul@yahoo.com

  64. VanDyke, Amy M., avandyke@consolidated.net

  65. Viens, Adrian, adrian.viens@gmail.com

  66. Vollmann, Jochen, jochen.vollmann@ruhr-uni-bochum.de

  67. Weinberger, Hagar, hagar.weinberger@gmail.com

  68. Weingarten, Michael, micky.weingarten@gmail.com

  69. Welin, Stellan, stellan.welin@liu.se

  70. Wu, Chuan-Feng, f1000@ms18.hinet.net

  71. Yang, Hsiu-I, hiyang@ym.edu.tw

  72. Zuckerman, Shlomit, shlomit.zuckerman@gmail.com
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