Ethnicity, bioethics, and prenatal diagnosis: the amniocentesis decisions of Mexican-origin women and their partners.
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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. (+info)
Adolescents' knowledge and attitudes concerning HIV infection and HIV-infected persons: how a survey and focus group discussions are suited for researching adolescents' HIV/AIDS knowledge and attitudes.
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The purpose of this article is to examine how two different corpora of material are suited for researching the sexuality of youth on the basis of material gathered via a structured questionnaire (N = 1183, response rate 87%) and via eight focus group discussions (FGDs), and to investigate the knowledge and opinions of adolescents at the age of 15 years about HIV infection and HIV-infected persons. Both boys and girls showed a good level of knowledge about HIV infection and AIDS. While their level of knowledge was good, their attitude was that the threat of an HIV infection was not a personal issue. Furthermore, negative attitudes to those having HIV/AIDS became more pronounced the more socially distant the infected person was to the respondent. The FGDs presented a more sceptical view of the attitudes of adolescents than the survey, while the knowledge about HIV infection and AIDS was the same regardless of the research method. In the FGDs, girls discussed the topics more extensively than boys, they used longer sentences, there was spontaneous discussion within the groups and the participants commented on each other's opinions. Boys were often content with short dichotomous responses and the interviewers had to qualify the responses with supplementary questions. (+info)
Exploring the UMLS: a rough sets based theoretical framework.
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The Unified Medical Language System (UMLS) [1] has a unique and leading position in the evolution of thesauri and metathesauri. Features that set it apart are: its composition from more than fifty component health care vocabularies; the sophisticated UMLS ontology linking the Metathesaurus with structures such as the Semantic Network and the SPECIALIST lexicon; and the high level of social collaboration invested in its construction and growth. It is our thesis that in order to successfully harness such a complex vocabulary for text retrieval we need sophisticated methods derived from a deeper understanding of the UMLS system. Thus we propose a theoretical framework based on the theory of rough sets, that supports the systematic and exploratory investigation of the UMLS Metathesaurus for text retrieval. Our goal is to make it more feasible for individuals such as patients and health care professionals to access relevant information at the point of need. (+info)
Security architecture for multi-site patient records research.
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A security system was developed as part of a patient records research database project intended for both local and multi-site studies. A comprehensive review of ethical foundations and legal environment was undertaken, and a security system comprising both administrative policies and computer tools was developed. For multi-site studies, Institutional Review Board (IRB) approval is required for each study, at each participating site. A sponsoring Principal Investigator (PI) is required at each site, and each PI needs automated enforcement tools. Systems fitting this model were implemented at two academic medical centers. Security features of commercial database systems were found to be adequate for basic enforcement of approved research protocols. (+info)
Review of animal models in carotenoid research.
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Foods containing provitamin A carotenoids are the primary source of vitamin A in many countries, despite the poor bioavailability of carotenoids. In addition, epidemiologic studies suggest that dietary intake of carotenoids influences the risk for certain types of cancer, cardiovascular disease and other chronic diseases. Although it would be ideal to use humans directly to answer critical questions regarding carotenoid absorption, metabolism and effects on disease progression, appropriate animal models offer many advantages. This paper will review recent progress in the development of animal models with which to study this class of nutrients. Each potential model has strengths and weaknesses. Like humans, gerbils, ferrets and preruminant calves all absorb beta-carotene (betaC) intact, but only gerbils and calves convert betaC to vitamin A with efficiency similar to that of humans. Mice and rats efficiently convert betaC to vitamin A but absorb carotenoids intact only when they are provided in the diet at supraphysiologic levels. Mice, rats and ferrets can be used to study cancer, whereas primates and gerbils are probably more appropriate for studies on biomarkers of heart disease. No one animal model completely mimics human absorption and metabolism of carotenoids; thus the best model must be chosen with consideration of the specific application being studied, characteristics of the model, and the available funding and facilities. (+info)
The precautionary principle and scientific research are not antithetical.
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The Precautionary Principle is intended to protect human health and the environment. To serve these goals effectively, precautionary action must be coupled with concurrent research to decide whether the action taken is in fact protective. (+info)
Closer to a compromise on the direction of environmental research.
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The Committee for the National Institute for the Environment (CNIE) was created in 1990 "to improve the scientific basis for making decisions on environmental issues," possibly through the establishment of a separate institute devoted to the environmental sciences. But while the goals proposed for the National Institute for the Environment were universally applauded, Congress was averse to adding a new agency to the federal bureaucracy. Recently, a compromise plan has been proposed that could expand the science base without having to create a new agency. On 29 July 1999, the National Science Board approved an interim report recommending an expanded program of environmental research and research planning, education, and scientific assessment with a funding target of an additional $1 billion over five years. The report stresses the importance of environmental research in formulating environmental protection programs and contains 12 recommendations intended to enhance and complement existing research activities in environmental sciences and engineering. If the National Science Foundation implements the recommendations in the report and if Congress appropriates funds for that purpose, the need for additional funding for new science activities identified by the CNIE should be satisfied. (+info)
Print media coverage of research on passive smoking.
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OBJECTIVE: To assess the extent and content of newspaper and magazine coverage of research on passive smoking. DESIGN: Content analysis of newspaper and magazine articles. SUBJECTS: Articles reporting on passive smoking research published in newspapers (n = 180) or magazines (n = 92) between January 1981 and December 1994. MAIN OUTCOME MEASURES: Numbers of articles, conclusions of articles, sources quoted, numbers and characteristics of research studies cited, presence of tobacco advertising. RESULTS: The number of newspaper and magazine articles reporting on passive smoking research increased from four in 1981 to 57 in 1992 and 32 in 1994. Sixty-two per cent (168/272) of articles concluded that the research on passive smoking is controversial. Tobacco industry representatives were quoted significantly more often in newspaper articles (52%, 94/180) than magazine articles (12%, 11/92) (p<0.0001). Of 121 different research studies cited in the lay press articles, only 15 were from tobacco-industry sponsored projects or publications. In magazines, acceptance of tobacco industry advertising was associated with the conclusion that research on passive smoking is controversial (p<0.0001). CONCLUSIONS: Although research on the harmful effects of passive smoking accumulated between 1981 and 1994, lay press coverage of the research maintained that the science was controversial. Few research studies were cited to support the industry's claim that passive smoking is not harmful to health. However, tobacco industry representatives who were critical of the research methods used to study the health effects of passive smoking were frequently quoted. (+info)