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Should genetic health care providers attempt to influence reproductive outcome using directive counseling techniques? A public health prospective.

Many areas of agreement exist among genetic health care (GHC) professionals (i.e., MD and PhD clinical geneticists, master's level genetic counselors, and others) and public health (PH) professionals. However, there are in our opinion at least two areas or tenets where a distinct difference of opinion exists. Two tenets widely expressed by prenatal GHC professionals are: (1) they should never attempt to influence the outcome of a pregnancy, and (2) they should only use non-directive genetic counseling techniques. From a PH perspective, these tenets could be viewed in some instances as counterproductive and contrary to a major goal of PH (i.e., to improve the health and well-being of all residents, including newborns). For example, PH's message regarding fetal alcohol syndrome (FAS) prevention is clear: If you are pregnant, don't drink; and if you drink, don't get pregnant. PH's message regarding neural tube defect (NTD) prevention is equally clear: all women of childbearing age who are capable of becoming pregnant should consume 0.4 mg of folic acid daily to reduce the risk of NTDs. In the past, issues such as eugenics, abortion of affected fetuses, and a lack of methods for the primary prevention of birth defects and genetic disorders have caused GHC providers to perform genetic counseling according to the two tenets mentioned above. Clearly, there are no moral or ethical reasons why children who are at risk for FAS, NTDs, fetal rubella syndrome, or many other conditions should not have the opportunity to be born healthy. Also, we know of no laws that prohibit providers from telling a woman to do something to improve her baby's chance of being born healthy. In our opinion, it is time for prenatal GHC professionals to re-examine the two tenets noted above on a case-by-case basis to determine when it is appropriate to use directive counseling techniques to improve reproductive outcomes in accordance with the goals of PH. A framework is provided here that could serve as: (1) a guide for future discussions dealing with these issues, and (2) a method to ensure that prenatal GHC policy and practice regarding these issues conform with one another.

Ethics, Medical↗

Aging mothers and aging daughters: life-long caring and intellectual disability.

While aging and caring are well-discussed in academic literature, the association among aging, caring and intellectual disability is less well documented. This paper draws on a recently completed Australian study which focuses on such mother/daughter relationships and whose narratives form the framework for an argument for a re-imagining of the concept of care for aged people with intellectual disability. Specifically, using a genealogical approach, the paper describes how powerful discourses at the time of the daughter's birth (1940s and 1950s)--associated with eugenics, institutional care and motherhood--are framing the way in which aging mothers are now contemplating the future care for their adult (and also aging) daughters.

Aged↗

The relationship between culture, personality, and sexual jealousy in men in heterosexual and homosexual relationships.

This study proposes a new approach to sexual jealousy, that of attitude theory. Within that framework, it examines the roles of culture and personality in the development of sexual jealousy. Using 194 men representing 62 male homosexual couples and 81 heterosexual couples, three hypotheses were analyzed: (1) that jealousy measured by a standard attitude measure, the semantic differential technique, will significantly positively correlate with scores on a standard jealousy measure, Eugene Mathes' Interpersonal Jealousy Scale; (2) that men in heterosexual couples will have higher levels of sexual jealousy than men in homosexual couples; and (3) that sexual jealousy is inversely correlated with self-actualization personality. All three hypotheses were supported, suggesting that sexual jealousy, viewed as an attitude, is mediated by culture and personality.

Adult↗

Surveying the intersection: pathology, secrecy, and the discourses of racial and sexual identity.

"Surveying the Intersection: Pathology, Secrecy, and the Discourses of Racial and Sexual Identity" cautions against the risks of metaphorical imperialism in readings of codified gay and lesbian representation. Taking issue with Foucault's suggestion that the secret of the nineteenth century was the secret of sex, I suggest that, in nineteenth-century American culture, where African-American identity and equality were among the most controversial issues of the century, the secrets of identity were secrets of race as well. Because scientific and literary representations of pathological and/or secret, essential identities are sites of intersection in the discourses of homosexual and mixed-race identity, they should be investigated as intersections, rather than read as codifications of sexual difference. Surveying the discourses of scientific racism, genetics, and eugenics, and doing readings of Frances E. W. Harper's Iola Leroy and Alice Dunbar-Nelson's "The Stones of the Village," I suggest that Harper's representation of the mulatto leader can be read as an act of resistance to the representation of the mulatto as a degenerate, hybrid species; and that in Dunbar-Nelson's story, the thematics of passing, secrecy, and the fear of detection, while having a recognizably homoerotic quality, should not be read simply as a codification of homosexual difference and panic. I conclude with a call for more work on historicizing the intersection of racial and sexual identity in the discourses of pathology and degeneration.

Black or African American↗

Believing is seeing: visual conventions in Barr's classification of the "feeble-minded".

The eugenics era (c. 1900-1930) produced a strong desire among mental retardation professionals to recognize and control "the feeble-minded." Some eugenicists believed it was possible to classify individuals visually by learning to recognize what they believed to be observable characteristics of idiocy and imbecility. In this paper I used qualitative methods to examine the visual classification scheme developed by Martin Barr and conclude that most of this classification scheme is a social construction that was reliant on modes of presentation, such as clothing and photographic style, which had very little to do with any inherent feeble-mindedness.

Cognition↗

Visual indictment: a contextual analysis of the Kallikak Family photographs.

The Kallikak Family is a pre-eminent text in the history of mental retardation and psychology in which Goddard (1912) claimed he proved the heritability of feeble-mindedness and the necessity of institutionalization. The book contains 14 photographs, some of which have been retouched. These photographs were interpreted in this paper within the context of clinical photography of the feeble-minded during the eugenics era, and the conclusion was made that the photographs are masterpieces of visual indictment propaganda that worked on the levels of assumed scientific objectivity, hovel imagery, mutually amplifying juxtapositions, stereotypic images of imbecility, and religious symbolism to achieve persuasiveness. A resolution of alleged "skullduggery" surrounding the retouching is presented.

History, 20th Century↗

Initial roentgenographic manifestations of bacteriologically proven Mycobacterium tuberculosis. Typical or atypical?

Admission chest roentgenograms were reviewed of all patients diagnosed with pulmonary and extrapulmonary tuberculosis (TB) at the Medical College of Georgia--Eugene Talmadge Memorial Hospital (MCG-ETMH) during a five-year period from 1979 to 1983. Of 75 patients included, 51 had pulmonary TB, whereas 24 had extrapulmonary infection. Cavitary disease was common (28 of 51 patients with pulmonary TB). Forty-four of 51 patients with pulmonary TB had involvement of apical and/or posterior segments of the upper lobes with cavitation or infiltrates. Pleural effusion, parenchymal nodules, lymphadenopathy, and lower lung field disease were uncommon. Thirteen of 24 patients with extrapulmonary TB had abnormal admission chest roentgenograms, suggesting the possibility of Mycobacterium tuberculosis infection. Despite recent studies suggesting that TB presents with atypical roentgenographic features more commonly than reported in the past, the roentgenographic manifestations of TB in our series were typical of those previously described as pathognomonic for the disease.

Adolescent↗

The index of individuality is often a misinterpreted quantity characteristic.

The concept of the "index of individuality" was introduced by Eugene Harris in 1974. The index of individuality, calculated as (CV(A)2 + CV(I)2)(1/2)/CV(G), where CV(A), CV(I), and CV(G) are analytical, within-subject, and between-subject coefficients of variation respectively, has been used by many to investigate the utility of conventional population-based reference values. For a high index of individuality, > 1.4, it has been said that reference intervals will be more useful than for a low index, < 0.6. The validity of these concepts is investigated here and a number of our findings are at odds with the generally held opinion. The index of individuality has no impact on the fraction of individuals classified using population-based reference values, as long as the change in concentration from the usual state is of the same absolute magnitude and one sample is assayed to detect disease. However, when a measurement falling outside a reference limit is repeated in order to verify the finding, the index of individuality has considerable influence. For quantities with very low indices, the repeat test result, will be close to the first and give no new information, whereas for quantities with high indices, a repeat test will decrease the number of true positives and false positives.

Biometry↗

Fetal rights versus the female body: contested domains.

This article examines the debates surrounding the personhood of the fetus in relationship to the mother as these issues were socially constructed in the Mississippi state legislature in 1990 and 1991. In examining the patriarchal assumptions that underlay the proposed Mississippi legislation, the article also addresses the legal ramifications of defining the fetus as a person whose rights are posited as equal to, or greater than, those of the pregnant woman. By relying on medical/scientific definitions of personhood, the groundwork for further refinement and monitoring of women and fetuses is being established, such that what it means to be human is increasingly defined in essentialist terms. In the final evaluation, focusing on conception as the moment in which an "unborn child" is created sets the stage for the ultimate essentialist metaphor: a eugenic definition of personhood.

Abortion, Legal↗

Prevention of allergic disorders.

Allergic disease produces substantial pediatric morbidity and individual dysfunction, making its mechanisms an appropriate target for clarification and preventive strategies. Disease expression seems to reflect a constellation of determinants that controls IgE production variably, affects specific function of target organs, and determines exposure to putative allergens. Bases for the two former factors are being defined rapidly and appear to be controlled genetically. Therefore, although stronger eugenic motivation will be required to exploit even present information for effective prevention, parental phenotypes can provide a rough indication of postconceptive risk. Despite many divergent data, current evidence fails to support the value of gestational strategies undertaken to prevent allergic disease in the newborn; however, this risk apparently may be reduced by avoiding postnatal allergens. The protection afforded seems to be allergen-specific rather than somehow serving to abate "the allergic tendency." Evidence increasingly is persuasive that sensitization to pollens, foods, and possibly other agents is prone to occur in the first 6 to 12 months of life. Strategies that exclude potent food allergens from the diets of high-risk infants appear to reduce the occurrence of atopic dermatitis, but seem far less able to influence respiratory symptoms. Efforts to limit exposure to potent inhalant allergens (eg, dust mites, animal "danders") are now also feasible and offer quite effective secondary and, perhaps, primary prevention. Trials of these strategies and clarification of other domestic contaminant effects on child health offer "homely" but valid and potentially useful approaches to reducing the impact of allergic disease.

Animals↗

Difference and danger: the cultural dynamics of childhood stigma, rejection, and rescue.

This paper presents a brief overview of some cultural, ecologic, and demographic influences on the treatment and maltreatment of infants and children with congenital anomalies. Based on research on the selective neglect of infants leading to death in parts of the developing world, it is suggested that such practices be viewed as "ethno-eugenic" survivalist strategies altogether distinct from malicious child abuse and neglect in the modern, industrialized world. Caution with respect to heroic (and not so heroic) medical interventions and "child saving" in the contexts of both developing and modern societies is stressed.

Attitude to Health↗

Genomics, health, and society.

On June 27, 2001, the World Health Organization conducted hearings in Geneva for a Special Report on Genomics & Health. Initially intended as a document to address the ethical, legal, and social implications of the gathering genomics resolution (ELSI), the terms of reference of the report were significantly modified to give primary emphasis to a scientific and technological assessment of the implications of genomics for human health. The Citizens' Health Initiative, one of two NGOs invited to make submissions at these consultations, suggested that no less important than the scientific and technical assessment was a perspective which gave due attention to the social context and political economy of scientific/technological development and its deployment. The article below touches upon neglected health priorities of poor countries, intellectual property rights and patents, risk management, insurance and discrimination, and predictive (prenatal) testing, reproductive choice, and eugenics.

Journal Article↗

[Attitudes of women and gynecologists towards voluntary sterilization in Serbia?].

INTRODUCTION: Voluntary sterilization is a very effective and safe birth control method. Is it, however, accepted as a birth control method in Serbia? This is certainly a question that should be explored, regardless of the fact that voluntary sterilization is neither accessible nor promoted. MATERIAL AND METHODS: The target group included women who decided to terminate their pregnancy, and gynecologists from various parts of Serbia. RESULTS AND DISCUSSION: The survey results indicate that more than half of women believe that voluntary sterilization should be available in Serbia. Also, a large number of surveyed women, almost half of them, would undergo voluntary sterilization. Younger women, respondents with secondary education, those who gave birth to a desired number of children, as well as those who have a good relationship with their partners, those who have experienced a great number of induced abortions, namely those who wish to use contraception in the future, are more open to voluntary sterilization. The majority of gynecologists also think that voluntary sterilization should become available in Serbia. Most of them consider therapeutic and eugenic reasons as appropriate for surgical sterilization. However, gynecologists lack current knowledge about this contraceptive method, and would not accept to use voluntary sterilization themselves. CONCLUSION: The reasons for individual nonacceptance indicate that many of the registered ambivalent or negative opinions can be changed by spreading knowledge on voluntary sterilization. Moreover, the knowledge of gynecologists about voluntary sterilization should be improved as well.

Adult↗

Kashin-Beck disease. An analysis of research and public health activities based on a bibliography 1849-1992.

The main feature of Kashin-Beck disease (KBD) is short stature caused by multiple focal necroses in the growth plate of the tubular bones. This leads to a secondary, sometimes severe osteoarthrosis. The disease was first described in Russia from the Bajkal area by Kashin 1848 and later, 1906, by Eugene Beck. Modern literature is mainly from China. The main theory originally proposed by Russian investigators was that KBD was caused by a toxic effect of mycotoxin. The focus on the disease gradually shifted to China where the causal theory has been based on the effects of selenium deficiency and its interaction with mycotoxins. These main hypotheses may be unified in one theory. KBD is appreciated as a public health problem estimated to affect some 1-3 million people across China. National and provincial registers on KBD exist for selected affected areas. Current incidence is probably declining. Preventive efforts have been undertaken but are usually not controlled for effectiveness nor by putative causal mechanisms. More research into the causal mechanisms is required. A combination of difficulties to obtain literature, including primary material together, and cultural and language barriers have been a main obstacle to more active participation by the international research community. This bibliography is an attempt to help improve this situation. The bibliography covers the period 1849-1992. The analysis of this bibliography shows a broad and intensive, though sometimes insufficiently coordinated research. Many authorities and research bodies are involved. The possibility to develop coordinated projects within a common framework, and thus to use research results to prevent KBD, has been a major source of inspiration in making this review. The review covers 499 publications directly related to KBD and 1415 references to these publications. KBD publications have been retrieved from conventional international journals, usually in English, publications in Russian, as well as unpublished reports in Chinese provided at site visits. The papers are classified by key words. The references in these publications have also been similarly classified and are in part analysed. Based on publications identified from several sources, direction of research and public health efforts from 1848 to 1992 are described. Finally, mainly based on questions raised by and recommendations from a WHO workgroup meeting in 1992, some major components of research activities and public health program are proposed.

Animals↗

Campodimele study: blood pressure and heart rate pattern in clinically healthy elderly subjects.

Noninvasive ambulatory blood pressure (BP) monitoring is a developing method in clinical practice. Its interpretation needs reference standards stratified by age and gender. This study addresses ambulatory BP monitoring in elderly people with the purpose of quantifying the discrete and periodic variability of BP pattern over a 24-h period. The ABPM was performed in 92 clinically healthy subjects (45 men and 47 women) ranging in age from 76 to 102 years. The results refer to the time-qualified mean values with their dispersion, to the circadian rhythm with its parameters, and to the daily baric impact (BI) with its variability. The conclusion is drawn that BP preserves its nychtohemeral variability and circadian rhythmicity despite old age. The daily BP mean level and BI in older people in good health are comparable with those of young subjects, suggesting that humans surviving into old age are characterized by a eugenic control of their pressure regimen.

Aged↗

Estimation of subject-specific normal ranges based on some statistical models of an individual's physiological variations.

Three statistical models of the individual's physiological variations, proposed by Dr Eugene K. Harris, were applied to the long-term series of individual test results in our health control system. It was found from this study that, in most cases, the homeostatic model shows the best fit to the population level from comparing correlation coefficients between the observations and estimations made based on Harris's three models. It was also found that for most cases, the homeostatic model gives the most reliable estimates in individual's level from the comparison of the chi-square values between the observations and estimations made for the individual's successive test results. Further, for a group of members with hyperglycaemia, the proportion of individuals in whom the random-walk model produced the most accurate predictions was increased to the proportion in the normal group. In the age group under 39 years of age, the autoregressive model showed a relatively high degree of predictive success, while the homeostatic model showed a relatively low degree in comparison with the results found in other age groups. From these investigations, it was found that the physiologically normal state shows strict homeostatic stability.

Female↗

No more surprising than a broken pitcher? Maternal and child health in the early years of the Pan American Sanitary Bureau.

The priorities and activities of international health organizations have historically been determined at the metropolitan level or through a confluence of central and local interests. The case of maternal and child health and the Pan American Sanitary Bureau during the first half of the 20th century demonstrates a different phenomenon. Rather than sparking interest and actions in maternal and child health in Latin America, the PASB ignored this area even though the agency was repeatedly urged by numerous countries in the region over several decades to provide support. This article begins with an examination of the emergence of maternal and child health circa 1900 in Europe, North America, and Latin America, identifying political, demographic, ideological, economic, and cultural commonalities and differences in these regions. We then turn to the PASB's early history and modus operandi, the pressure exerted by Latin American countries upon the PASB to pay attention to maternal and child health, and the Bureau's unwillingness to work in this area. Next we explore concomitant developments in maternal and child health and eugenics within Latin America in the 1920s and 1930s and the PASB's first steps in this area. Finally we discuss the conflict over the PASB's role in maternal and child health on several dimensions: as a manifestation of differing cultural priorities in the U.S. and Latin America; as a question of struggle for organizational power within the PASB; and as part of a richer understanding of the diffusion of early 20th-century public health and medical practices.

Americas↗

Development of the Spitz-Holter valve in Philadelphia.

The history of the treatment for hydrocephalus dates back to the Fertile Crescent thousands of years ago. Despite three millennia of management, significant advances in the surgical treatment of the disease have been infrequent. During the 1950s, a milestone occurred at the Children's Hospital of Philadelphia, with the successful development of the first working shunt valve for the treatment of hydrocephalus. In this historical vignette, based on recent interviews with John Holter, D.Sc. (Hon) and Eugene Spitz. M.D., and on a review of the available literature, the authors narrate the exciting story of the development of the Spitz-Holter valve, which took place in Philadelphia during the early 1950s.

Cerebrospinal Fluid Shunts↗