Based on extensive questionnaire data, this paper focuses on parents’ views about children’s right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at (...) some point be allowed decisional authority when participating in research: 41.6% of the parents reported being against or unsure. Those who responded positively believed that children should be allowed to decide about blood-sampling procedures (70%), but to a less extent about participation (48.5%), analyses of samples (19.7%) and biological bank storage (15.4%). That as many as possible should remain in the study, and that children do not have the competence to understand the consequences for research was strongly stressed by respondents who do not think children should have a right to decide. When asked what interests they consider most important in paediatric research, child autonomy and decision-making was ranked lowest. We discuss the implications of these findings. (shrink)

Based on extensive clinical questionnaire data, this paper explores the relation between research subjects’ self-assessed understanding and actual knowledge of a large-scale predictive screening study, and its implications for the proper handling of information and consent routines in longitudinal studies. The intitial data show that low self-assessed understanding among participants was correlated with limited knowledge, concern over participation and collected samples, less satisfaction with information, and feeling passive or negative towards the study. Among those reporting high understanding, a non-negligible number (...) displayed a lack of knowledge regarding central aspects of the study. Regarding high assessed understanding, the multivariate analysis identified the main predictor variables to be knowledge, having a positive attitude towards participation and the study itself, being satisfied with information, having a stable psychosocial background and feeling calm regarding the handling of samples. These findings indicate that to evaluate participants' understanding through self-assessment may not be reliable method. Self-assessed understanding may rather be a good indicator of general attitudes than a tool for analysing content. The data also show that actual understanding varies considerably among participants, suggesting that more effort needs to be put into adjusting the information to the needs of different subgroups. It is argued that when doing this, researchers in longitudinal studies must be careful not to exhaust participants with excessive information that they do not want and that may cause them to drop out. The ethical relevance of obtaining repeated consents in longitudinal research is discussed. (shrink)

Collection of works on literature theory, translated into Mongolian language.

The title of McClain’s book suggests that its theme is Plato’s seeming Pythagoreanism; yet it contains no commentary on the Philebus or the Phaedo. Its subtitle suggests that the theme is rather the five mathematical disciplines which may constitute a propaedeutic to dialectic ; yet it contains almost no account of the first four, and little account of the fifth as propaedeutic in this way. McClain’s book is rather an "adventure in musical imagination" whose proximate aim is a detailed and (...) coherent display of Plato’s musical imagination. (shrink)

1-pu. Ŭmak kwa yŏsŏng -- 1. Wae widaehan ŭmakka nŭn modu namsŏng in'ga? -- 2. Ŭmakchŏk kabujangje -- 3. Ch'angjak hwaltong esŏŭi yŏsŏng sooe -- 4. Yŏsŏng ŭmakka ŭi sŏng yŏkhal -- 5. Ŭmak kyoyuk esŏŭi sŏng ch'abyŏl -- 6. Widaehan yŏsŏng ŭmakka ŭi t'ansaeng ŭl wihayŏ -- 2-pu. Ŭmak sok ŭi yŏsŏng -- 1. Ŭmak chakp'um esŏŭi namsŏng kwa yŏsŏng -- 2. Ŭmak esŏ kulchŏl toen yŏsŏng imiji -- 3. Ŭmak sok ŭi yŏngung kwa ch'angnyŏ ŭi yŏkhal -- 4. (...) Tongsŏngae wa ŭmakchŏk tamnon-- 5. Kŭrŏt'amyŏn p'eminijŭm ŭmak ŭn kanŭng han'ga? (shrink)