Informed consent is a central concept for empirical and theoretical research concerning pregnancy management decisions and is often taken to be one of the more fundamental goals of the profession of genetic counseling. Tellingly, this concept has been seen by disability communities as salutary, despite longstanding critiques made by disability activists, advocates, and scholars concerning practices involved in genetic counseling more generally. In this chapter, we show that the widespread faith in informed consent is misleading and can be detrimental to (...) the practice of genetic counseling as guided by concerns of justice and equity. We proceed in two steps. First, we explain how informed consent is flawed as a practical concept. Second, we show how the inadequacy of informed consent illuminates the animating core of disability critiques of genetic counseling: the issue of ableism. We argue that the problem of ableism cannot be solved with informed consent because it is not merely a problem of information, but also of epistemic schemas. We suggest that what we call critically informed consent is better suited to move genetic counseling from being aware of the problem of ableism to becoming actively anti-ableist. (shrink)

Public health ethics in the future will be distinguished from public health ethics in the past by this new subfield being labeled as such, acknowledged, and called upon for service. Ethical dilemmas have been present throughout the history of public health. The question of whether to force Henning Jacobson to be immunized in 1905 in accordance with the 1902 Massachusetts smallpox vaccination law was one of ethics as well as law. How Thomas Parran, Surgeon General in 1936, chose to respond (...) to a raging syphilis epidemic in the United States in the early part of the 2W century raised considerable moral debate in determining the appropriate public health response for a government? More recently, questions have arisen concerning the appropriate reach of government in controlling HIV banning smoking, or promoting healthy lifestyles. Debates over government infringement, morality, and justice recur throughout the history of public health. (shrink)

Advocates for the professionalization of clinical bioethics argue that bioethics professionals play an important role in contemporary medicine and patient care, especially when addressing complex ethical questions that arise in the delivery of reproductive medicine. For bioethics consultants to serve effectively, they need adequate training in the medical and ethical issues that patients and clinicians will face, and they need skills to facilitate effective dialog among all parties. Because clinical ethics consultation is a “high‐stakes endeavor” that can acutely affect patient (...) care, efforts are under way to ensure that bioethics consultants have the competence to provide such guidance. Yet to date, no studies have examined whether the training of bioethics consultants meets the needs of health care professionals who are on the front lines of such issues. In fact, limited information is available on the reproductive health issues that bioethics training programs address or the degree to which these programs meet the needs of patients confronting reproductive health decisions and their clinicians. It is therefore important to answer this key question: What are the primary ethical issues encountered in reproductive medicine that currently affect patient care? Equally important, are bioethics training programs prepared to address those issues?To begin to answer these questions, we conducted parallel surveys of directors of graduate bioethics training programs and obstetrician‐gynecologists. The goal of this project is to lay the groundwork to establish a working partnership between bioethics educators and reproductive medicine practitioners to address the often troubling and frequently complex ethical issues in reproductive medicine. (shrink)

Medical practitioners have traditionally seen themselves as part of an international community with shared and unifying scientific and ethical goals in the treatment of disease, the promotion of health, and the protection of life. This shared mission is underpinned by explicit acceptance of traditional concepts of medical morality, and by an implied link between individual human rights and the ethics of medical practice long enshrined in a range of World Medical Association (WMA) and other medical codes. These have been powerful (...) instruments exhorting individual practitioners to promote health and to defend universal principles in order to protect their patients and the physician-patient relationship even in the face of authoritarian state coercion and imposed national ideologies and policies. There has been widespread support for this approach and this should be intensified. (shrink)

In his compelling novel Blindness, José Saramago tells us about victims stricken by a contagious form of blindness who were quarantined and came to see themselves as pigs, dogs, and “lame crabs.” Of course, they were all human beings - although unable to perceive themselves, or others, as members of the human community. The disciplines of bioethics, health law, and human rights are likewise all members of the broad human rights community, although at times none of them may be able (...) to see the homologies, even when responding to a specific health challenge.The boundaries between bioethics, health law, and human rights are permeable, and border crossings, including crossings by blind practitioners, are common. Two working hypotheses form the intellectual framework of this article: we can more effectively address the major health issues of our day if we harmonize all three disciplines; and American bioethics can be reborn as a global force by accepting its Nuremberg roots and actively engaging in a health and human rights agenda. (shrink)

In his compelling novel Blindness, José Saramago tells us about victims stricken by a contagious form of blindness who were quarantined and came to see themselves as pigs, dogs, and “lame crabs.” Of course, they were all human beings - although unable to perceive themselves, or others, as members of the human community. The disciplines of bioethics, health law, and human rights are likewise all members of the broad human rights community, although at times none of them may be able (...) to see the homologies, even when responding to a specific health challenge.The boundaries between bioethics, health law, and human rights are permeable, and border crossings, including crossings by blind practitioners, are common. Two working hypotheses form the intellectual framework of this article: we can more effectively address the major health issues of our day if we harmonize all three disciplines; and American bioethics can be reborn as a global force by accepting its Nuremberg roots and actively engaging in a health and human rights agenda. (shrink)

The aim of this study was to assess nurses’ and physicians’ ethical dilemmas in clinical practice. Nurses and physicians of the Clinical Hospital Centre Rijeka were surveyed (N = 364). A questionnaire was used to identify recent ethical dilemma, primary ethical issue in the situation, satisfaction with the resolution, perceived usefulness of help, and usage of clinical ethics consultations in practice. Recent ethical dilemmas include professional conduct for nurses (8%), and near-the-end-of-life decisions for physicians (27%). The main ethical issue is (...) limiting life-sustaining therapy (nurses 15%, physicians 24%) and euthanasia and physician-assisted suicide (nurses 16%, physicians 9%). The types of help available are similar for nurses and physicians: obtaining complete information about the patient (37% vs. 50%) and clarifying ethical issues (31% vs. 39%). Nurses and physicians experience similar ethical dilemmas in clinical practice. The usage of clinical ethics consultations is low. It is recommended that the individual and team consultations should be introduced in Croatian clinical ethics consultations services. (shrink)

Zadaniem artykułu jest analiza wniosków, płynących z debaty na temat eksperymentów na zarodkowych komórkach macierzystych, dla refleksji bioetycznej. Autorka postawiła sobie trzy cele. Po pierwsze, scharakteryzowanie toczonej w Polsce dyskusji na temat moralnej dopuszczalności prowadzenia eksperymentów na zarodkowych komórkach macierzystych - istoty tego sporu i wysuwanych w nim argumentów. Po drugie, zanalizowanie formy prowadzenia tej dyskusji z punktu widzenia wyróżnionych w literaturze przedmiotu modeli uprawiania bioetyki. Po trzecie, przedstawienie na tym przykładzie pewnych ogólniejszych refleksji filozoficznych i metodologicznych, dotyczących sposobu rozważania (...) problemów bioetycznych i roli bioetyki. W konkluzji Autorka stwierdza, że "bioetyka regulacji", traktowana obecnie jako paradygmat refleksji bioetycznej, nie dysponuje odpowiednimi narzędziami do rozstrzygnięcia pytań etycznych i filozoficznych, wykraczających poza kwestię oceny użyteczności danej techniki dla realizacji postawionego celu medycznego i powinna zostać uzupełniona o "bioetykę kulturową". Zwraca także uwagę na paradoks związany z rozwojem bioetyki, której powstanie wiązano z koniecznością obrony cenionych w danej kulturze wartości przed technologią medyczną. Akceptacja eksperymentów na zarodkowych komórkach macierzystych jest równoznaczna ze złamaniem wypracowanych dotąd zasad prowadzenia badań na człowieku i zmusza do zadania pytania, w jaki sposób powinniśmy bronić istotnych dla naszej kultury wartości przed "bioetyką regulacji". (shrink)

Recent research on patient decision-making reveals a disconnect between theories of autonomy, agency, and decision-making and their practice in contemporary clinical encounters. This study examines these concepts in the context of female patients making oncofertility decisions in the United Kingdom in light of the phenomenon of “being guided.” Patients experience being guided as a way to cope with, understand, and defer difficult treatment decisions. Previous discussions condemn guided decision-making, but this research suggests that patients make an informed, autonomous decision to (...) be guided by doctors. Thus, bioethicists must consider the multifaceted ways that patients enact their autonomy in medical encounters. (shrink)