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)

Contemporary liberal democracies contain multiple cultural, religious, and philosophical traditions. Within these societies, different interpretive communities provide divergent models for understanding health, illness, and moral obligations. Bioethicists commonly draw upon models of moral reasoning that presume the existence of shared moral intuitions. Principlist bioethics, case-based models of moral deliberation, intuitionist frameworks, and cost-benefit analyses all emphasise the uniformity of moral reasoning. However, religious and cultural differences challenge assumptions about common modes of moral deliberation. Too often, bioethicists minimize or ignore the (...) existence of multiple traditions of moral inquiry. Careful consideration of the presence of multiple horizons for moral deliberation generates challenging questions about the capacity of bioethicists to effectively resolve complex cases and social policy disputes. (shrink)

Patient-Centered Care and Cultural Practices: Process and Criteria for Evaluating Adaptations of Norms and Standards in Health Care Institutions Content Type Journal Article Pages 327-339 DOI 10.1007/s10730-009-9115-8 Authors Matthew R. Hunt, McMaster University Department of Clinical Epidemiology and Biostatistics Montreal Canada Journal HEC Forum Online ISSN 1572-8498 Print ISSN 0956-2737 Journal Volume Volume 21 Journal Issue Volume 21, Number 4.

Background: The bioethics literature contains speculation but little data about sociodemographic differences between patients for whom ethics committees (EC) are consulted for conflict about life-sustaining treatment (LST) and the broader hospital population that these committees serve. To provide an empirical context for this discussion, we examined differences in five sociodemographic factors between patients for whom an EC was consulted for conflict over LST and the general inpatient population, hypothesizing that nonwhite patients were most likely to be disproportionately represented. Methods: This (...) was a retrospective cohort study comparing self-reported race/ethnicity, household income, insurance status, primary language, and religious affiliation between patients involved in EC consultations for conflict over LST and the general adult inpatient population at a large academic hospital from January 1, 2007, through December 31, 2013. Results: There were 169 EC consultations involving conflict over LST and 243,197 adult inpatient admissions over the study period. On bivariate analysis, patients for whom the EC was consulted for conflict over LST were more likely to be nonwhite, low-income, and to speak a primary language other than English. They were not more likely to be underinsured or to report a religious affiliation. On multivariate analysis, patients for whom the EC was consulted for conflict over LST were more likely to be nonwhite (odds ratio [OR], 2.5; 95% confidence interval [CI], 1.7–3.7; p <.001). They were also more likely to be low income (OR, 1.8; 95% CI, 1.1–3.0; p =.02). They were not more likely to speak a primary language other than English (OR, 1.4; 95% CI, 0.9–2.1; p =.17). None of the assessed variables were associated with conflict over LST requiring additional meetings beyond the first EC consultation. Conclusions: Nonwhite and low-income status patients are disproportionately represented in EC committee consultation for conflict over LST compared to the general inpatient population. (shrink)

Modern bioethics, which is based on Western moral philosophy and Western biomedical perspectives, has evolved within a complex, highly individualistic culture that draws a sharp distinction between church and state and tolerates a multitude of values. This discipline defines its principles in secular and objective terms that often are bewildering to people of non-Western origin. Despite much discourse, principlism remains the fundamental framework of bioethics. Principlism is held in such high regard that many bioethicists equate autonomy with personhood, as if (...) autonomy exists independently of specific beliefs and commitments.In addition, we continue to minimize the substantial differences in the way people of different cultures perceive, experience, and explain illness, although our views of the potential cultural limitations of Western medicine have grown and expanded in recent years. At the heart of it we continue to be tied to a biomedical focus that largely neglects the context of the situation. (shrink)

Modern bioethics, which is based on Western moral philosophy and Western biomedical perspectives, has evolved within a complex, highly individualistic culture that draws a sharp distinction between church and state and tolerates a multitude of values. This discipline defines its principles in secular and objective terms that often are bewildering to people of non-Western origin. Despite much discourse, principlism remains the fundamental framework of bioethics. Principlism is held in such high regard that many bioethicists equate autonomy with personhood, as if (...) autonomy exists independently of specific beliefs and commitments.In addition, we continue to minimize the substantial differences in the way people of different cultures perceive, experience, and explain illness, although our views of the potential cultural limitations of Western medicine have grown and expanded in recent years. At the heart of it we continue to be tied to a biomedical focus that largely neglects the context of the situation. (shrink)

In Japan, discussion concerning advance directives (ADs) has been on the rise during the past decade. ADs are one method proposed to facilitate the process of communication among patients, families and health care providers regarding the plan of care of a patient who is no longer capable of communicating. In this paper, we report the results of the first in-depth survey on the general population concerning the preferences and use of ADs in Japan. A self-administered questionnaire was sent via mail (...) to a stratified random sampling of 560 residents listed in the residential registry of one district of Tokyo, Japan (n = 165,567). Association between correlating factors and specific preferences toward ADs was assessed using contingency table bivariate analysis and multivariate regression model to estimate independent contribution. Of the 560 questionnaires sent out, a total of 425 participants took part in the survey yielding a response rate of 75.9 %. The results of the present study indicate that: 1) the most important components to be addressed are the specifics of medical treatment at the end of life stage and disclosure of diagnosis and prognosis; 2) the majority of participants found it suitable to express their directives by word to family and/or physician and not by written documentation; 3) there is no strong need for legal measures in setting up an AD; 4) it is permissible for family and physician to loosely interpret one's directives; 5) the most suitable proxy is considered to be a family member, relative, or spouse. Multivariate analysis found the following five factors as significantly associated with preferences: 1) awareness regarding living wills, 2) experience with the use of ADs, 3) preferences for end-of-life treatment, 4) preferences for information disclosure, and 5) intentions of creating a will. Written ADs might be useful in the Japanese setting when the individual either wishes: 1) to not provide a lot of leeway to surrogates and/or caregivers, and/or 2) to ensure his or her directives in the cases of terminal illness, brain death, and pain treatment, as well as regarding information disclosure. (shrink)

Background In Japan, discussion concerning advance directives (ADs) has been on the rise during the past decade. ADs are one method proposed to facilitate the process of communication among patients, families and health care providers regarding the plan of care of a patient who is no longer capable of communicating. In this paper, we report the results of the first in-depth survey on the general population concerning the preferences and use of ADs in Japan. Method A self-administered questionnaire was sent (...) via mail to a stratified random sampling of 560 residents listed in the residential registry of one district of Tokyo, Japan (n = 165,567). Association between correlating factors and specific preferences toward ADs was assessed using contingency table bivariate analysis and multivariate regression model to estimate independent contribution. Results Of the 560 questionnaires sent out, a total of 425 participants took part in the survey yielding a response rate of 75.9 %. The results of the present study indicate that: 1) the most important components to be addressed are the specifics of medical treatment at the end of life stage and disclosure of diagnosis and prognosis; 2) the majority of participants found it suitable to express their directives by word to family and/or physician and not by written documentation; 3) there is no strong need for legal measures in setting up an AD; 4) it is permissible for family and physician to loosely interpret one's directives; 5) the most suitable proxy is considered to be a family member, relative, or spouse. Multivariate analysis found the following five factors as significantly associated with preferences: 1) awareness regarding living wills, 2) experience with the use of ADs, 3) preferences for end-of-life treatment, 4) preferences for information disclosure, and 5) intentions of creating a will. Conclusions Written ADs might be useful in the Japanese setting when the individual either wishes: 1) to not provide a lot of leeway to surrogates and/or caregivers, and/or 2) to ensure his or her directives in the cases of terminal illness, brain death, and pain treatment, as well as regarding information disclosure. (shrink)