Public knowledge, public trust: understanding the 'knowledge deficit'

This article examines the 'knowledge deficit' model, which still persists in liberal, technological societies. It is based upon the assumption that expert forms of knowledge, both in the sciences and the humanities, provide a sufficient basis for deciding the most important public policy questions. In this view, public perceptions and beliefs that run counter to this expert knowledge provide unacceptable justifications for public policies. Instead, support of expert knowledge needs to be 'built' through education and public relations strategies. This view is challenged on the basis of basic democratic theory, using the debate about genetically modified maize in Mexico as an example. 'Knowledge deficits' also exist on the side of experts.     

Community genetic services in Latin America and regional network of medical genetics. Recommendations of a World Health Organization consultation

The World Health Organization sponsored a Consultation on Community Genetic Services and a Regional Network of Medical Genetics in Latin America in Porto Alegre, Brazil, on June 19, 2003. The main recommendations of the meeting included: (a) the call for government funding of services, research and education in medical genetics; (b) the conduct of epidemiological research on the prevalence and types of birth defects, genetic disorders and genetic predispositions to common diseases; (c) the education of health professionals in genetics; (d) the education of genetic professionals in community health and public health genetics; (e) the fostering of interactions between clinical geneticists, public health personnel, primary health care workers and community organizations, and (f) a better planning of regionalized services to avoid duplication and inefficiency.     

The role of the World Health Organization in promoting medical genetics in Latin America

The Human Genetics Program of the World Health Organization (WHO) has analyzed the needs for genetic services worldwide and the promotion of genetic approaches for the prevention of diseases linked to primary health care. This article presents a summary of the most important initiatives of the WHO in this field, which have served as a background for the Consultation in Medical Genetics in Latin America, which took place in Porto Alegre, Brazil, in June 19, 2003, and whose working reports are published in this special issue of Community Genetics.     

On the use of incomplete constitutive information in thermoelasticity

The extent to which non-linear thermoelastic constitutive data may be determined by controllable states is delineated, and thermomechanical states that may be analyzed completely with such incomplete data are catalogued. These include non-homogeneous finite deformations coupled with quite general temperature fields in plane, cylindrical and spherical geometries. Two problems involving the states are worked out as examples.This research was supported by the U.S. National Science Foundation Grant GK-37367 to The University of Texas at Austin.     

Genetic databases and consent for use of medical records

The legislation on the Icelandic genetic database provides for an opting-out system for the collection of encoded medical information from individual medical records. From the beginning this has raised criticism, in Iceland itself and abroad. The Supreme Court has now decided that this approach of presumed consent is not unconstitutional per se, but that there are not sufficient safeguards to ensure that the information collected is not traceable to individuals. The decision of the court is of importance for the debate (at national and international level) on the legal and ethical aspects of population-based genetic databases. Furthermore, it is interesting because it recognizes the right of close relatives of a deceased person to oppose the collection and use of his or her medical data for genetic research, at least as long as these data may still be identifiable.     

Social, political, and epistemological aspects of genetics and genomics

The papers in this special issue were first given at a conference in Toronto, Canada, in April 2004 entitled 'Genomics, Genetics, and Society: Bridging the Disciplinary Divides'. The papers fall into four intersecting themes. (1) The introduction of genetic and genomic technologies into communities. (2) Governance, the morals of scientific discourse and policy making. (3) What is a gene? (4) Public knowledge, public trust and improved dialogue between the public and scientists.     

Medical genetics services in the city of Sao Paulo, Brazil

The city of Sao Paulo is located in the center of a metropolitan area with nearly 18 million inhabitants and 300,000 births/year. The currently existing medical genetics services are unable to meet the demand, due to their insufficient physical and personnel infrastructure. Institutions and experts in medical genetics could give short training and refresher courses to health professionals to enable them to work in the public health network. The city has a reasonably well developed health care network, represented by the Single Health System (Sistema Unico de Saude - SUS) and by the Family Health Program (Programa de Saude da Familia - PSF). The financial resources for such actions originate in the budget of the managing agencies of such systems. The limitations of genetic services provided to the population of the city could be overcome in a short period of time by developing programs within the public health care network. The city has institutions, professionals and financial resources to make this project feasible. To that end, the competent authorities of the Sao Paulo State and City Secretariats of Health should take managerial responsibility for the genetic services in the city.     

Uptake and impact of carrier testing for cystic fibrosis. A review and a theoretical framework about the role of knowledge, health beliefs and coping

The first aim of the paper is to review research into the uptake of carrier testing for cystic fibrosis and into the impact of carrier testing on self-esteem, risk perception and reproductive decisions. The second aim is to connect the most important findings to psychological theories and concepts. Thirdly, we infer practical suggestions for genetic counselling. The uptake of genetic testing for CF could be explained by at least three (complementary) interrelated psychological concepts: the (lack of) genetic information, the individual's health beliefs and the concept of coping with a health threat. Cognitive and/or emotional coping mechanisms played also an important role in preserving self-esteem after a positive carrier test and in the subjective evaluation of the residual risk after a negative test result. Suggestions are given regarding genetic counselling in general and regarding free informed decision making.     

Structure optimization of quasi one-dimensional acoustic filters with the use of a genetic algorithm

The paper shows how to use a genetic algorithm to design quasi one-dimensional structures with given properties. The superlattices were surrounded by water and made of epoxy resin and glass, with a layer thicknesses selected in such a way that a phononic bandgap occurs in the frequency range of acoustic waves. Multilayer transmission was calculated using the Transfer Matrix Method algorithm. In order to determine the optimal objective function for the genetic algorithm, the entire space of the possibility of the layers’ distribution for a six-layer structure was analyzed. The spread of the transmission integral values even for the 6-layer structure was significant and ranged from 11.9% to 81.5%. Minimizing the value of the transmission integral as an objective function could lead to a large number of high transmission peaks with a small half width. It allowed the determining of the optimal objective functions for minimizing transmission in a given frequency range, and another allowing for its maximization. The phase diagram of the solution space for the transmission integral from the integral of the absolute value of the transmission functions derivative was determined. Transmission of the most and the least optimal six-layer structures was shown depending on the assumed objective function. Then, the analysis of fifteen and thirty-layer structures was carried out. From the dependence of the objective function values for the best individuals for each generation, it was determined that despite carrying out a thousand iterations, the stable state was determined before reaching 250 iterations of the algorithm, and thus the optimal structure was determined. The transmissions ratio of analyzed structures in the studied frequency range (up to 20 kHz) to full transmission (without structures) in this acoustic frequency range for the analyzed optimal 6, 15 and 30-layer structures were 16.78%, 9.6% and 4.41%, respectively.     

Understanding the information needs of general practitioners managing a rare genetic disorder (osteogenesis imperfecta)

BACKGROUND: Lack of adequate knowledge is a common problem in medicine, but is a particular problem in a rapidly advancing field like genetics. This study uses the example of a rare genetic disorder (osteogenesis imperfecta) to understand the information needs of primary care physicians (GPs). OBJECTIVES: To determine whether a knowledge gap is recognised, how GPs currently attempt to overcome it, and what features of an information resource are preferred by GPs. METHODS: GPs of children affected by osteogenesis imperfecta in and around Greater London were interviewed, using both questionnaire-based semi-structured interview and a qualitatively analysed open-ended discussion. Consultations in both primary and tertiary care settings over a 5-year period were compared. RESULTS: Problems due to osteogenesis imperfecta were presented to GPs in about one third of consultations with these patients. GPs reported finding such patients difficult to manage due to lack of knowledge. Knowledge from tertiary sources, which was authoritative, accessible and relevant, was preferred, particularly when reasoning was explained. Primary literature and clinical guidelines were not favoured. CONCLUSIONS: Empirical evidence supports and elaborates theoretical models for provision of clinically useful information. A model for improved information services using authoritative web-based information linked to electronic patient records is suggested.     

On the use of genetic algorithm for finding the neutral instability curve in plane Poiseuille flow

A novel method based on genetic algorithm (GA) is proposed, to the best of our knowledge for the first time, for finding the neutral instability curve of the Orr-Sommerfeld equation in (nearly) parallel flows. New concepts such as “proximity of parents” and “gender discrimination” are added to the conventional GA in order for this algorithm to find the neutral instability curve. Certain GA operators such as “crossover” and “mutation” will also be modified in such a way that this algorithm can meet this purpose. To check the applicability of the modified genetic algorithm (MGA) developed in this work in finding the neutral instability curve, the case of plane Poiseuille flow will be used as a benchmark. It will be shown that the modified genetic algorithm developed in this work is well capable of determining the neutral instability curve for this particular flow geometry.