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Rapp R 《Journal of genetic counseling》1993,2(3):183-196
This article reports on an anthropological investigation of the social impact and cultural meaning of amniocentesis conducted in New York City, illustrating how class differences, as well as sociocultural diversity, deeply affect pregnant women's acceptance, rejection, and interpretation of prenatal testing. The article also suggests the importance of recognizing how counselors' cultural backgrounds and styles affect patient-counselor communications. 相似文献
3.
Genetic counseling for women of advanced maternal age who are considering prenatal testing continues to be based on a principle of nondirectiveness. We interviewed 11 genetic counseling students and four counselors about how they experience and manage, in practice, the tensions between the ideology of nondirectiveness and the acknowledged reality that one can never be truly nondirective. We found that our respondents creatively resolve this tension—simultaneously resisting and adhering to the values of nondirectiveness and information-giving—in individual and situation-specific ways. This resolution is facilitated by the extent to which information given to counselees is fluid, mobile and context-dependent, but these very features of information also have critical implications for both the norms and the practice of genetic counseling. 相似文献
4.
Previous studies have shown that unexplained deviations in maternal serum multiple marker screening (MMS) generate considerable anxiety during the remainder of pregnancy. While the role of education in decreasing anxiety is documented, to date there has been no prospective evaluation of which educational practices might minimize this emotional stress. In a pilot study, we prospectively examined the effects on anxiety and knowledge by providing information about MMS (1) by genetic counselor, (2) by pamphlet, and (3) by primary physician. Women randomized to one of these three modalities were administered the Spielberger State- Trait Anxiety Inventory [STAI] and knowledge questionnaires at their initial obstetrics visit, at their second visit after educational intervention and 1–2 weeks after MMS results were provided to patients. Education resulted in an increase in knowledge and post-education knowledge was different between educational modalities. Anxiety declined in patients educated through genetic counseling or a pamphlet. 相似文献
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A mailed survey of female prenatal genetic counselors, obstetric nurses, and high school biology teachers was conducted to determine if these groups hold different attitudes toward genetic risk and to investigate the extent to which any differences result from the effect of different professional experiences. In this study, the participants were 166 genetic counselors, 116 obstetric nurses, and 78 biology teachers (n = 360). Survey participants completed a written questionnaire designed to assess their numeric estimate of the empiric risk for birth defects/genetic problems, their subjective perception of this risk, and their personal use of prenatal diagnosis. Genetic counselors were found to be less likely than the other groups to consider the frequency of birth defects/genetic problems as rare and were 10 times more likely than nurses and 8 times more likely than teachers to have had prenatal diagnosis. Furthermore, more than half of the prenatal diagnosis procedures had by genetic counselors were not medically indicated. These results suggest that genetic counselors have an increased perception of genetic risks relative to nurses or teachers. Possible explanations for this finding are discussed, and the potential role of discordant risk perception in creating biases in the genetic counseling process is explored. 相似文献
7.
Few studies have been published on the attitudes of people with physical disabilities toward genetic counseling and prenatal diagnosis. Articles in the lay press and social science literature on this topic, mainly written by disability rights activists and advocates, imply opposition to prenatal diagnosis and the field of clinical genetics by the physically disabled population. In this study, 15 adults with physical disabilities were interviewed regarding their attitudes toward genetic counseling and prenatal diagnosis. Genetic counseling and prenatal diagnosis were generally viewed favorably by this sample of the disability community. Only a small percentage of the sample perceived genetics to be eugenic. Implications for genetic counseling and future research are discussed. 相似文献
8.
McConkie-Rosell A Finucane B Cronister A Abrams L Bennett RL Pettersen BJ 《Journal of genetic counseling》2005,14(4):249-270
These recommendations describe the minimum standard criteria for genetic counseling and testing of individuals and families
with fragile X syndrome, as well as carriers and potential carriers of a fragile X mutation. The original guidelines (published
in 2000) have been revised, replacing a stratified pre- and full mutation model of fragile X syndrome with one based on a
continuum of gene effects across the full spectrum of FMR1 CGG trinucleotide repeat expansion. This document reviews the molecular
genetics of fragile X syndrome, clinical phenotype (including the spectrum of premature ovarian failure and fragile X-associated
tremor-ataxia syndrome), indications for genetic testing and interpretation of results, risks of transmission, family planning
options, psychosocial issues, and references for professional and patient resources. These recommendations are the opinions
of a multicenter working group of genetic counselors with expertise in fragile X syndrome genetic counseling, and they are
based on clinical experience, review of pertinent English language articles, and reports of expert committees. These recommendations
should not be construed as dictating an exclusive course of management, nor does use of such recommendations guarantee a particular
outcome. The professional judgment of a health care provider, familiar with the facts and circumstances of a specific case,
will always supersede these recommendations. 相似文献
9.
Fripp D Owen C Quintana-Rizzo E Shapiro A Buckstaff K Jankowski K Wells R Tyack P 《Animal cognition》2005,8(1):17-26
Bottlenose dolphins are unusual among non-human mammals in their ability to learn new sounds. This study investigates the importance of vocal learning in the development of dolphin signature whistles and the influence of social interactions on that process. We used focal animal behavioral follows to observe six calves in Sarasota Bay, Fla., recording their social associations during their first summer, and their signature whistles during their second. The signature whistles of five calves were determined. Using dynamic time warping (DTW) of frequency contours, the calves signature whistles were compared to the signature whistles of several sets of dolphins: their own associates, the other calves associates, Tampa Bay dolphins, and captive dolphins. Whistles were considered similar if their DTW similarity score was greater than those of 95% of the whistle comparisons. Association was defined primarily in terms of time within 50 m of the mother/calf pair. On average, there were six dolphins with signature whistles similar to the signature whistles of each of the calves. These were significantly more likely to be Sarasota Bay resident dolphins than non-Sarasota dolphins, and (though not significantly) more likely to be dolphins that were within 50 m of the mother and calf less than 5% of the time. These results suggest that calves may model their signature whistles on the signature whistles of members of their community, possibly community members with whom they associate only rarely. 相似文献
10.
Abby Lippman 《Journal of genetic counseling》1999,8(5):255-274
Open-ended, qualitative interviews with women to whom amniocentesis was offered were analyzed to understand how women made sense of these tests. We found that women, whether tested or not, negotiated with biomedical information. They transformed it through identifiable processes, then wove it with their own instincts and beliefs and with their personal experiences, thereby creating embodied knowledge on which their decisions were based. Women who were and were not tested may have differed from each other when categorized on the basis of a final, binary choice, but they were more alike than unalike in reaching this point. The apparent importance of embodied knowledge suggests the critical role of the listening activities of the genetic counselor and of awareness of the validity and importance of women's complementary ways of knowing and doing in understanding the uses and meanings of prenatal genetic testing. 相似文献