Search

To the Editor: In 'Conscientious Autonomy: Displacing Decisions in Health Care' (HCR, Mar-Apr 2005), Rebecca Kukla argues persuasively that it's a mistake to equate autonomy with the ability to make [...]

In 1946, the newly formed World Health Organization boldly sought to conceptualize 'health' as wellbeing in the positive sense, 'not merely the absence of disease or infirmity.' Yet nearly six decades later, researchers are still principally concerned with pathology and its characteristics and consequences. This special issue is the result of an effort to broaden the focus. Anthropologists working from evolutionary, biological and sociocultural perspectives and in diverse geographic regions were asked to examine meanings associated with health and/or to identify social conditions and practices that have contributed to positive physiological and psychological states in particular cultures, times, or across time. Most notable, perhaps, was discovering how difficult it is for Western social scientists to move beyond pathology-based thinking; most authors represented here regard health primarily as the absence of disease. Still, these papers articulate and address questions key to understanding health in and of itself, including: How is health conceptualized? What kinds of social conditions lead to health? And, how do social inequalities affect health? This introduction critically discusses previous work on the subject to contextualize the original research papers offered here. Keywords: Definitions of health; Social determinants of health; Social inequalities and health; Medical anthropology; Cross cultural approaches; Biology and health

Despite the growing routinization of prenatal diagnosis, little research has examined men's roles in this reproductive arena or these technologies' possibilities for reinforcing or transforming gender roles and relations. The authors analyze male partners' participation in the amniocentesis decisions of Mexican-origin women at high risk for problems, drawing on interviews with 157 women and 120 of their male partners. The primary aim is to explore whether the normalization of prenatal testing poses a threat to women's autonomy in this decision arena. The findings challenge critics of new reproductive and genetic technologies who assume that these technologies inherently represent male attempts to control women's bodies and the processes of reproduction. In contrast, the authors find many couples try to balance their desire to share equally in parenting responsibilities while maintaining the woman's ultimate control over her body and decisions associated with it. Keywords: prenatal testing; reproduction; Latinos; gender politics; men

Amniocentesis, and other prenatal genetic tests, have become a well-established feature of modern prenatal care. But these tests place a considerable decision-making burden on the expectant mothers to whom they are offered: the genetic issues involved are complex and the appropriate course of action sometimes ambiguous. Genetic counseling aims to help, pregnant clients make an informed decision about prenatal genetic tests. But the clientele of prenatal genetic counseling has changed significantly in the years since the practice was established. Clients were once a self-selected group of women well-informed about the genetic services being offered. In contrast, clients now include an increasing number of women, particularly ethnic minority women, who had no prior knowledge of genetic testing, but were found to be at risk of birth defects after routine screening. Little is known about how well genetic counseling serves the needs of this new clientele. This paper investigates the possibility that miscommunication between genetic counselors and their Mexican-origin clients contributed to the higher rates of amniocentesis refusal. We interviewed 156 pregnant Mexican-origin women who screened positive on a blood test routinely offered in California to detect birth defects. We also observed the genetics consultations of a sub-sample of the women. We identified five common sources of miscommunication: (1) Medical jargon; (2) The non-directive nature of counseling; (3) The inhibitions of counselors stemming from misplaced cultural sensitivity; (4) Problems of translation; (5) Problems of trust. We found that many Mexican-origin women are skeptical of genetic testing and do not easily surrender their own lay theories about the causes of their condition. In order to dislodge the misunderstandings of their clients, counselors must give clients the opportunity to air their own views, however contrary to those of genetics professionals these may be. [c] 2002 Elsevier Science Ltd. All rights reserved. Keywords: Genetic counseling; Client-provider miscommunication; Latinas' reproductive decision making; Narrative analysis; USA

As with other medical care, low-income Latinas turn down prenatal genetics services, including amniocentesis, more than any other U.S. group. Amniocentesis is a medical procedure that provides information about a fetus' health. Virtually all conditions the test detects are untreatable other than by induced abortion. Because little is known about why Latinas accept or decline amniocentesis and the role ethnicity might play in their decision, we sought to address these issues. We first identify factors associated with amniocentesis acceptance and refusal in a group of Mexican-origin women. We then described the actions those who refused took after turning down the test and their explanations for their acts. We show that while study participants' ideas about what put their pregnancies at risk were often at odds with those of clinicians, their objectives were similar: to reduce risk and maintain hope in the face of uncertainty.

A speech was presented discussing the contribution medical anthropologists can make in medical practice and research. Medical anthropologists, biomedical researchers and clinicians join to define concrete concepts and terms for providing healthcare to the public.

TV Commercial: Scene one: A woman is in labor. She is in pain. Hospital staff and medical equipment surround her. Something is wrong; there are complications. The laboring woman wonders [...]

Why is informed consent required for prenatal testing? Consent is routinely sought, but examination of the theory behind and the implementation of informed consent for prenatal testing suggests that we [...]

This exploratory ethnographic study describes some of the control strategies used by a multinational manufacturer of communications technology to influence the aptitudes and productivity of its clerical employees. Production quotas were applied to all clerical activities, but workers were also rewarded for their ability to creatively solve on-the-job problems. In addition, clerks were socialized to regard their jobs as careers, and they were expected to take personal sacrifices to benefit the corporation. The paper describes ways in which the clerical staff responded to these control efforts. Some found the rewards their jobs offered inadequate and they quit after a short time. The remainder, however, did not question the corporation's definition of the situation, and they devised ways to satisfy their employer's expectations. These ranged from superhuman efforts to meet targeted goals to quasi-legal manoeuvres to circumvent them. (Reprinted by permission of the publisher.)

Bioethical standards and counseling techniques that regulate prenatal diagnosis in the United States were developed at a time when the principal constituency for fetal testing was a self-selected group of White, well-informed, middle-class women. The routine use of ([Alpha]-fetoprotein (AFP) testing, which has become widespread since the mid-1980s, introduced new constituencies to prenatal diagnosis. These new constituencies include ethnic minority women, who, with the exception of women from certain Asian groups, refuse amniocentesis at significantly higher rates than others. This study examines the considerations taken into account by a group of Mexican-origin women who had screened positive for AFP and were deciding whether to undergo amniocentesis. We reviewed 379 charts and interviewed 147 women and 120 partners to test a number of factors that might explain why some women accept amniocentesis and some refuse. A woman's attitudes toward doctors, medicine, and prenatal care and her assessment of the risk and uncertainty associated with the procedure were found to be most significant. Case summaries demonstrate the indeterminacy of the decision-making process. We concluded that established bioethical principles and counseling techniques need to be more sensitive to the way ethnic minority clients make their amniocentesis choices. (Am J Public Health. 1999;89:1658-1666)

In most countries of the third world, strategies for development in the health sector include efforts to upgrade the skills of village level health care workers, including traditional birth attendants (TBAs). In spite of several decades of experience, training programs for TBAs have not been particularly successful. Drawing on data from several years of ethnographic fieldwork with Maya midwives in Yucatan and on participation in government-sponsored training courses for indigenous midwives, this paper examines some of the reasons underlying this failure. Paramount among these are differences in world view and the misapplication of didactic modes of teaching in situations where learning in the apprenticeship mode is more appropriate and culturally customary. Key words--ethno-obstetrics, TBAs, models of teaching and learning

Although recent studies have identified some of the links in Latin America between uneven capitalist economic development and health, the impact of development on either the health of women or on household health is still largely unknown. This account identifies several areas of needed research. It focuses on how changing women's roles and patterns of domestic production affect women's reproductive behavior, and the consequences of these changes for the health of women other members of their households.

While neurologists encountered the social and ethical concerns associated with diagnosing incurable genetic diseases long before direct DNA testing became available, the increased availability of these tests has magnified these concerns. Most research has focused on the implications of testing asymptomatic individuals; research on the experience of patients with symptoms of heritable conditions is lacking, leaving an ambiguity about their needs with regard to genetic counseling, whether it involves professional counselors or physicians. Here, we investigate the meaning that patients with chorea and ataxia symptoms ascribe to potential or actual DNA testing and explore how patients diagnosed with Huntington's disease or genetic ataxia experience the social, economic and familial implications of a genetic diagnosis. Data come from 27 neurology consultations and 27 in-depth interviews with patients. We found that most view an actual or potential genetic diagnosis as providing relief from uncertainty about their health status. While for some a genetic test can be very similar to other types of procedures aimed at confirming or ruling out a diagnosis, for others (e.g. early symptomatic patients), the implications of diagnostic genetic testing are similar and sometimes amplified when compared with those of predictive testing. Through a case study approach, we identify several expectations and adverse reactions. These include unrealistic hopes that a test will yield a diagnosis leading to treatment, uncertainty about the meaning and reliability of a positive test, and distress upon learning that one has a lethal genetic condition that has already progressed. Even if molecular genetic testing is similar in many respects to prior diagnostic procedures, the many ethical and social issues that have been identified in the context of predictive testing also apply to diagnostic testing. At the same time, concerns specific to symptomatic patients should be considered. [ABSTRACT FROM AUTHOR]

The article reports on the impact of interpreters' approach on Latinas' use of amniocentesis. This work aims to identify the influence of translators participating in clinical encounters in which English-speaking clinicians offered amniocentesis to Spanish-speaking women by doing systematic observations of 61 prenatal genetic consultations and recording translators' background and training characteristics and patients' amniocentesis decisions. The translators' approaches were regarded as distant, missionary, or authoritative. It was concluded that translators' affective approaches can influence whether patients accept of refuse amniocentesis.

The medical decision-making literature has paid scant attention to how prior expectations of patients and clinicians can influence medical encounters and affect patients' choices whether to accept or reject medical testing or treatment. To illuminate the issue, we offer a reflexive analysis of the experiences of a Mexican-American couple offered amniocentesis based on the woman's age and prior pregnancy history. We examine the impact of three principal factors: incongruity between expectations and reality for both patient and clinicians; the actors' ethnic backgrounds; and the history and nature of relationship dynamics between the patient and her male partner. We conclude that unmet expectations on the part of both patient and clinicians evoked powerful emotions that altered the woman's previous intention to agree to amniocentesis. [ABSTRACT FROM AUTHOR]

Offers examples of structural contexts in which either women or men had the power to influence key aspects of women's reproductive activities. Clandestine abortion decisions in Cali, Colombia; Conjugal and reproductive dynamics in an indigenous Mexican village; Fetal diagnosis for high-risk Mexican babies in the United States.