Patients belonging to ethnic, racial, and religious minorities have been all but excluded from the legal academy's on-going conversation about informed consent. This article repairs that egregious omission. It begins by observing the narrowing of ethical justifications that underlie our informed consent law, tracing the ethical literature from the ancients to modern formulations of autonomy-centered models. Next, this article reviews the vast body of empirical data available in social science literature, that demonstrates how distinct from the autonomy model the broad (...) range of values and priorities held by patients from racial, ethnic, and religious minority groups is. The conclusion that informed consent's focus on the western notion of autonomy affirmatively harms minority patients is inescapable. The article concludes by offering a fiduciary model of informed consent law that could improve the quality of health care for more than 100 million minority patients, potentially at risk under current law while also regulating the informed consent procedure and practice in a way that will bring balance and justice to all American patients and providers. (shrink)

Current approaches in bioethics largely overlook the multicultural social environment within which most contemporary ethical issues unfold. For example, principlists argue that the common morality of society supports four basic ethical principles. These principles, and the common morality more generally, are supposed to be a matter of shared common sense. Defenders of case-based approaches to moral reasoning similarly assume that moral reasoning proceeds on the basis of common moral intuitions. Both of these approaches fail to recognize the existence of multiple (...) cultural and religious traditions in contemporary multicultural societies. In multicultural settings, patients and their families bring many different cultural models of morality, health, illness, healing, and kinship to clinical encounters. Religious convictions and cultural norms play significant roles in the framing of moral issues. At present, mainstream bioethics fails to attend to the particular moral worlds of patients and their family members. A more anthropologically informed understanding of the ethical issues that emerge within health care facilities will need to better recognize the role of culture and religion in shaping modes of moral deliberation. (shrink)

Thomas Hobbes is one of the most ardent and thoroughgoing opponents of participatory democracy among Western political philosophers. Though Hobbes 's alternative to participatory democracy - assent by subjects to rule by an absolute sovereign - no longer constitutes a viable political alternative for Westerners, his critique of participatory democracy is a potentially valuable source of insight about its liabilities. This essay elaborates five theses from Hobbes that stand as cogent warnings to those who embrace participatory democracy, especially those advocating (...) for deliberative democracy based on a rational consensus model. In light of these warnings, the author suggests an alternative, modus vivendi approach to deliberative democracy that would radically alter the current practice of bioethics. (shrink)

I argue that there has been inadequate attention to and questioning of the dominance and normativity of whiteness in the cultural construction of bioethics in the United States. Therefore we risk reproducing white privilege and white supremacy in its theory, method, and practices. To make my argument, I define whiteness and trace its broader social and legal history in the United States. I then begin to mark whiteness in U.S. bioethics, recasting Renee Fox's sociological marking of its American-ness as an (...) important initial marking of its whiteness/WASP ethos. Furthermore, I consider the attempts of social scientists to highlight sociocultural diversity as a corrective in U.S. bioethics. I argue that because they fail to problematize white dominance and normativity and the white-other dualism when they describe the standpoints of African-American, Asian-American, and Native-American others, their work merely inoculates difference and creates or maintains minoritized spaces. Accordingly, the dominant white center of mainstream U.S. bioethics must be problematized and displaced for diversity research to make a difference. In conclusion, I give several examples of how we might advance the recommended endeavor of exploring our own ethnicity, class, and other social positioning and norms operating in U.S. bioethics, briefly highlighting "white talk" as one challenge. (shrink)

Patients belonging to ethnic, racial, and religious minorities have been all but excluded from the legal academy’s ongoing conversation about informed consent. Perhaps this is just as well, since the conversation appears to have concluded that the doctrine has failed to serve as a meaningful regulation of clinical relationships. Informed consent does not operate in practice the way it was intended in theory. More than a decade ago, Peter Schuck noted the “informed consent gap” that distinguishes the “proper” law of (...) informed consent “on the books” from the actual consent law in action, and called for a more contextualized approach to informed consent. Susan Wolf later called for a systemic approach to informed consent in order to accommodate multiple decision points in the managed care setting. Some reformers have sought enhancements to expand the doctrine. (shrink)

In Anerkennung der für Gegenwartsgesellschaften konstitutiven Diversität ihrer Bevölkerungen diskutieren Bioethik und Medizin verstärkt die kulturelle Relativität ihrer eigenen Voraussetzungen, die Kulturspezifik „anderer“ Positionen und die Möglichkeiten kulturübergreifender Orientierungen. Dabei kommt häufig ein Kulturbegriff zum Einsatz, der aus der Perspektive der aktuellen Sozial- und Kulturanthropologie zu statisch, zu homogenisierend und zu sehr auf Differenz und Abgrenzung hin orientiert ist. Der Beitrag diskutiert zunächst Konzepte von Kultur, die solche Verkürzungen zu vermeiden suchen. Sie betonen hingegen Verflechtungszusammenhänge unter dem Vorzeichen intensivierter Globalisierung (...) und deuten Kultur aktiv und reflexiv, als Ressource menschlichen Tuns, und nicht deterministisch als Kausalfaktor. Anschließend wird der ethnographische Forschungsstand zu Patientenverfügungen in westlichen Gesundheitssystemen zusammengefasst. Zeitintensive, qualitative Forschung verdeutlicht die Gefahr einer Kulturalisierung sozialer Ungleichheiten, die spezifische Positionalität bioethischer Prämissen und die Vielfalt und Komplexität im Umgang mit Patientenverfügungen. Der Beitrag schließt mit Hinweisen darauf, wie Diversität in Entscheidungsprozessen am Ende des Lebens jenseits von Kultur analysiert werden kann. (shrink)

In Anerkennung der für Gegenwartsgesellschaften konstitutiven Diversität ihrer Bevölkerungen diskutieren Bioethik und Medizin verstärkt die kulturelle Relativität ihrer eigenen Voraussetzungen, die Kulturspezifik „anderer“ Positionen und die Möglichkeiten kulturübergreifender Orientierungen. Dabei kommt häufig ein Kulturbegriff zum Einsatz, der aus der Perspektive der aktuellen Sozial- und Kulturanthropologie zu statisch, zu homogenisierend und zu sehr auf Differenz und Abgrenzung hin orientiert ist. Der Beitrag diskutiert zunächst Konzepte von Kultur, die solche Verkürzungen zu vermeiden suchen. Sie betonen hingegen Verflechtungszusammenhänge unter dem Vorzeichen intensivierter Globalisierung (...) und deuten Kultur aktiv und reflexiv, als Ressource menschlichen Tuns, und nicht deterministisch als Kausalfaktor. Anschließend wird der ethnographische Forschungsstand zu Patientenverfügungen in westlichen Gesundheitssystemen zusammengefasst. Zeitintensive, qualitative Forschung verdeutlicht die Gefahr einer Kulturalisierung sozialer Ungleichheiten, die spezifische Positionalität bioethischer Prämissen und die Vielfalt und Komplexität im Umgang mit Patientenverfügungen. Der Beitrag schließt mit Hinweisen darauf, wie Diversität in Entscheidungsprozessen am Ende des Lebens jenseits von Kultur analysiert werden kann. (shrink)

Most writing on informed consent in Africa highlights different cultural and social attributes that influence informed consent practices, especially in research settings. This review presents a composite picture of informed consent in Nigeria using empirical studies and legal and regulatory prescriptions, as well as clinical experience. It shows that Nigeria, like most other nations in Africa, is a mixture of sociocultural entities, and, notwithstanding the multitude of factors affecting it, informed consent is evolving along a purely Western model. Empirical studies (...) show that 70–95% of Nigerian patients report giving consent for their surgical treatments. Regulatory prescriptions and adjudicated cases in Nigeria follow the Western model of informed consent. However, adversarial legal proceedings, for a multiplicity of reasons, do not play significant roles in enforcing good medical practice in Nigeria. Gender prejudices are evident, but not a norm. Individual autonomy is recognized even when decisions are made within the family. Consent practices are influenced by the level of education, extended family system, urbanization, religious practices, and health care financing options available. All limitations notwithstanding, consent discussions improved with increasing level of education of the patients, suggesting that improved physician's knowledge and increasing awareness and education of patients can override other influences. Nigerian medical schools should restructure their teaching of medical ethics to improve the knowledge and practices of physicians. More research is needed on the preferences of the Nigerian people regarding informed consent so as to adequately train physicians and positively influence physicians' behaviors. (shrink)

Most writing on informed consent in Africa highlights different cultural and social attributes that influence informed consent practices, especially in research settings. This review presents a composite picture of informed consent in Nigeria using empirical studies and legal and regulatory prescriptions, as well as clinical experience. It shows that Nigeria, like most other nations in Africa, is a mixture of sociocultural entities, and, notwithstanding the multitude of factors affecting it, informed consent is evolving along a purely Western model.Empirical studies show (...) that 70–95% of Nigerian patients report giving consent for their surgical treatments. Regulatory prescriptions and adjudicated cases in Nigeria follow the Western model of informed consent. However, adversarial legal proceedings, for a multiplicity of reasons, do not play significant roles in enforcing good medical practice in Nigeria. Gender prejudices are evident, but not a norm. Individual autonomy is recognized even when decisions are made within the family. Consent practices are influenced by the level of education, extended family system, urbanization, religious practices, and health care financing options available. All limitations notwithstanding, consent discussions improved with increasing level of education of the patients, suggesting that improved physician's knowledge and increasing awareness and education of patients can override other influences.Nigerian medical schools should restructure their teaching of medical ethics to improve the knowledge and practices of physicians. More research is needed on the preferences of the Nigerian people regarding informed consent so as to adequately train physicians and positively influence physicians’ behaviors. (shrink)

In an attempt to promote in-depth dialogue amongst bioethicists coming from distinct disciplinary and religious backgrounds this essay offers a critical analysis of a number of the leading methods of addressing pluralism in bioethics and. Exploring the critiques and methodological proposals coming from the social sciences, the contract theorists, and the pragmatists, this study describes the problems which arise when confronting moral diversity in a bioethical context and examines the ability of these various methodologies to adequately resolve these matters. Finally, (...) the foundations of a new conceptual framework for bioethical methodology will be developed. It will be argued that these new methodological insights are able to overcome the problems facing other methodologies and may provide a viable means for adequately addressing issues of pluralism in bioethics. (shrink)

Culture creates the context within which individuals experience life and comprehend moral meaning of illness, suffering and death. The ways the patient, family and the physician communicate and make decisions in the end-of-life care are profoundly influenced by culture. What is considered as right or wrong in the healthcare setting may depend on the socio-cultural context. The present article is intended to delve into the cross-cultural perspectives in ethical decision making in the end-of-life scenario. We attempt to address the dynamics (...) of the roles of patient, family and physician therein across two countries from East and West, namely, India and Germany. In India, where illness is more a shared family affair than an individual incident, a physician is likely to respect the family’s wishes and may withhold the ‹naked truth’ about the diagnosis of a fatal disease to the patient. In Germany, a physician is legally required to inform the patient about the disease. In India, advance directive being virtually non-existent, the family acts as the locus of the decision-making process, taking into account the economic cost of available medical care. In Germany, advance directive is regarded as mandatory and healthcare is covered by insurance. Family and the physician appear to play larger roles in ethical decision making for patients in India than for those in Germany, who place greater emphasis on autonomy of the individual patient. Our study explicates how culture matters in ethical decision-making and why the bioethical discourse is necessary in the concrete realities of the socio-cultural context. To explore the possibility of finding a common ground of morality across different cultures while acknowledging and respecting cultural diversity, thus remains a formidable challenge for the bioethicists. (shrink)