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Motivating donors to genetic research? Anthropological reasons to rethink the role of informed consent.

In this article we explore the contribution from social anthropology to the medical ethical debates about the use of informed consent in research, based on blood samples and other forms of tissue. The article springs from a project exploring donors' motivation for providing blood and healthcare data for genetic research to be executed by a Swedish start-up genomics company. This article is not confined to empirical findings, however, as we suggest that anthropology provides reason to reassess the theoretical understanding of autonomy as generally defined by Beauchamp and Childress. Careful consideration of the trust expressed by donors through the act of donation, furthermore, suggests that there is reason to redirect the ethical scrutiny from informed consent to issues concerning institutional arrangements and social responsibility. In particular, we suggest that an anthropological approach could facilitate a reconsideration of the political implications of using informed consent as a regulatory practice in tissue-based research.

Anthropology, Cultural↗

Whole rat electron paramagnetic resonance imaging of a nitroxide free radical by a radio frequency (280 MHz) spectrometer.

Low frequency (280 MHz) electron paramagnetic resonance spectroscopy has been used to follow uptake, distribution and reduction of the nitroxyl spin label PCA in the rat. No difference of half life was found in seven rats submitted to three administrations of PCA (11.3 +/- 0.4; 11.0 +/- 0.6 and 11.5 +/- 0.7 min). Transversal two-dimensional images of PCA distribution in the rat body were obtained over 6 min by means of field gradients. PCA was observed in three regions by projections along the longitudinal axis of the rat. PCA accumulation was found in the lower abdomen 12 min after the start of the PCA injection.

Animals↗

Comparison of forelimb and hindlimb motor deficits following dorsal column section in monkeys.

Macaca speciosa monkeys were trained to acquire food reinforcement with motor responses that were defined by 4 different tasks. The effects of dorsal column lesions on the speed of these responses were compared for the forelimbs vs. the hindlimbs. Enduring impairments were not seen for any limb when the animal was required to accurately project a limb to different points in space, even with exclusion of visual guidance and with random variation of the start and stop points for each movement. Similarly, when the task required that the animals emit rapid response sequences, the forelimbs were impaired temporarily, but no long-term deficits were seen for the forelimbs or the hindlimbs. Although these impositions of spatial and temporal demands did not reveal striking disruptions of whole-limb movements, hindlimb grasp responses were shown to be impaired over long periods of postoperative testing. This corroborates previous findings for the forelimb and indicates that facility of distal extremity movement depends crucially on dorsal column-lemniscal input.

Animals↗

Phoenix--the first Mars Scout mission.

NASA has initiated the first of a new series of missions to augment the current Mars Program. In addition to the systematic series of planned, directed missions currently comprising the Mars Program plan, NASA has started a series of Mars Scout missions that are low cost, price fixed, Principal [correction of Principle] Investigator-led projects. These missions are intended to provide an avenue for rapid response to discoveries made as a result of the primary Mars missions, as well as allow more risky technologies and approaches to be applied in the investigation of Mars. The first in this new series is the Phoenix mission which was selected as part of a highly competitive process. Phoenix will use the Mars 2001 Lander that was discontinued in 2000 and apply a new set of science objectives and mission objectives and will validate this soft lander architecture for future applications. This paper will provide an overview of both the Program and the Project.

Climate↗

Single nucleotide polymorphisms and the future of genetic epidemiology.

In this review, we consider the motivation behind contemporary single nucleotide polymorphism (SNP) initiatives. Many of these initiatives are projected to involve large, population-based surveys. We therefore emphasize the utility of SNPs for genetic epidemiology studies. We start by offering an overview of genetic polymorphism and discuss the historical use of polymorphism in the identification of disease-predisposing genes via meiotic mapping. We next consider some of the unique aspects of SNPs, and their relative advantages and disadvantages in human population-based analyses. In this context, we describe and critique the following six different areas of application for SNP technologies: Gene discovery and mapping. Association-based candidate polymorphism testing. Diagnostics and risk profiling. Prediction of response to environmental stimuli, xenobiotics and diet. Homogeneity testing and epidemiological study design. Physiologic genomics. We focus on key issues within each of these areas in an effort to point out potential problems that might plague the use of SNPs (or other forms of polymorphism) within them. However, we make no claim that our list of considerations are exhaustive. Rather, we believe that they may provide a starting point for further dialog about the ultimate utility of SNP technologies. In addition, although our emphasis is placed on applications of SNPs to the understanding of human phenotypes, we acknowledge that SNP maps and technologies applied to other species (e.g. the mouse genome, pathogen genomes, plant genomes, etc.) are also of tremendous interest.

Alleles↗

Fatty acid composition of serum cholesterol esters as a reflector of low-saturated-fat, low-cholesterol diet in young children: the STRIP project. The Special Turku coronary Risk factor Intervention Project.

STRIP (the Special Turku coronary Risk factor Intervention Project) is an ongoing intervention trial which aims at a permanent reduction in the intake of saturated fat and cholesterol starting in childhood. A total of 75 intervention and 63 control children was studied consecutively at the ages of 7 and 13 mo, and 2, 3 and 5 y to evaluate the influence of such intervention on serum cholesterol ester (CE) fatty acid composition, a widely used biomarker of fatty acid intake. Analysis of 4-d food records showed that total intake of fat and of saturated fat increased with age in both groups of children but was constantly lower in intervention than in control children, e.g. at the age of 5 y the mean intakes of total fat and of saturated fatty acids were 31.1 E% and 33.9 E% and 12.1 E% and 14.6 E% in intervention and control children, respectively (p = 0.009 and 0.0001, respectively). Serum CE fatty acid compositions did not differ between the 2 groups at any age; the mean proportion of CE linoleic acid was 52.4% and 52.0% in 5-y-old intervention and control children, respectively. Correlation analysis showed, however, that the percentage of linoleic acid and of polyunsaturated fatty acids in CE reflected well the respective dietary intakes (r = 0.36; p = 0.0001 for both coefficients). In conclusion, CE fatty acid composition did not differ between the intervention and control groups, whereas CE linoleic and total polyunsaturated fatty acids reflected well the differences in their intakes at the individual level.

Child, Preschool↗

National guidelines for Swedish neonatal nursing care: evaluation of clinical application.

OBJECTIVE: To evaluate the clinical application of national guidelines for neonatal nursing. DESIGN: Questionnaire survey. SETTING: Thirty-nine neonatal care units in Sweden. STUDY PARTICIPANTS: Thirty-five of 39 nurse managers at all Swedish neonatal care units. INTERVENTION: Thirteen clinical guidelines for neonatal nursing care were presented in 1997. Recommendations on evidence-based nursing care and auditing measures were given. Most neonatal units in Sweden participated in the guideline development. MAIN OUTCOME MEASURES: Extent of guideline application, ways in which the guidelines were used and perceived usefulness. RESULTS: The guidelines were applied to different extents in 30 of the 35 units. Almost all the guidelines were applied, especially those covering general nursing care. In total, 72 Quality Improvement (QI) projects were reported, of which 51 concerned specific topics covered in the guidelines. Twenty units applied the guidelines as a starting point for QI. Four units evaluated nursing practice against the guidelines. Four factors [Dynamic Standard Setting System (DySSSy) as the QI method, > or = 4 years of practice as nurse manager, experience of nursing research, and good staff resources] were closely related to a more extensive application of the guidelines. Units with both a nurse manager and an assistant nurse manager were more likely to have used the guidelines as the basis for changing clinical practice. CONCLUSIONS: The guidelines were successfully disseminated and diffused, but practitioner involvement in guideline development did not guarantee implementation. Downsizing, leadership and facilitation seemed to be crucial factors when getting evidence into practice. Limited occurrence of evaluations of clinical practice against guideline recommendations suggests a need for valid and user-friendly measures.

Attitude of Health Personnel↗

Comparison of bone mineral content and biochemical markers of bone metabolism in stall- vs. pasture-reared horses.

Sixteen Arabian yearlings were assigned randomly to 2 groups, confined to stall and pastured, to investigate the effects of confinement vs. pasture-rearing on bone mineral content and biochemical markers of bone metabolism over a 140 day period. Following an 84 day pretraining period, 6 horses from each group were selected randomly to complete a 56 day training period. Serum osteocalcin concentrations were determined from blood samples collected every 14 days. Urinary deoxypyridinoline concentrations and mineral content of the third metacarpus, as determined by lateral and medial radiographic bone aluminum equivalency (RBAE), were determined every 28 days from 24 h urine samples and radiographs of the left forelimb, respectively. In comparison with starting values, lateral RBAE was lower in the confined horses at Day 28 and remained lower throughout most of the project, while pastured horses had increasing lateral RBAE. Horses kept in stalls had lower medial RBAE at Day 28 than pasture-reared horses. Medial RBAE tended to remain lower in confined horses than in pastured horses throughout most of the project. The onset of training failed to negate the loss of mineral. Serum osteocalcin concentrations were lower and urinary deoxypyridinoline concentrations were higher in the confined horses at Days 14 and 28, respectively, compared with the pastured horses, and subsequently returned to baseline. These results suggest that housing yearling/2-year-old horses in stalls may be associated with a loss of bone mineral content in comparison with horses maintained on pasture.

Amino Acids↗

Can access to spirometry in asthma education centres influence the referral rate by primary physicians for education?

BACKGROUND AND OBJECTIVES: Asthma remains uncontrolled in a large number of asthmatic patients. Recent surveys have shown that a minority of asthmatic patients are referred to asthma educators. The objective of the present study was to assess the influence of increased access to spirometry in asthma education centres (AECs) on the rate of patient referrals to these centres by general practitioners. METHODS: A one-year, prospective, randomized, multicentric, parallel group study was conducted over two consecutive periods of six months each, with added spirometry being offered in the second six-month period to the experimental group. Ten AECs were enrolled in the project. An advertisement describing the AECs' services was sent by mail to a total of 303 general practitioners at the start of each period, inviting them to refer their patients. Measures of the frequency of medical referrals to the AECs were assessed for each period. RESULTS: The group of AECs randomly selected for spirometry in the second six-month period received 48 medical referrals during the first period and 32 during the second one, following proposed spirometry. AECs that had not offered spirometry received five referrals during the first period and seven during the second period. One AEC withdrew a few weeks after the study began and others encountered administrative problems, reducing their ability to provide interventions. CONCLUSIONS: Referral to AECs is not yet integrated into the primary care of asthma and offering more rapid access to spirometry in the AECs does not seem to be a significant incentive for such referrals.

Asthma↗

Variations in dental anxiety among middle-aged and elderly women in Sweden: a longitudinal study between 1968 and 1996.

Cross-sectional studies have shown that older individuals are significantly less dentally anxious than younger ones. However, research has not been able to show if this is a cohort effect or an effect of fear declining with age. If it is a cohort effect, dental anxiety among the elderly may pose a greater-than-expected problem for the providers of dental services. With the exception of longitudinal studies in children and a three-year follow-up on adults, no truly longitudinal epidemiological studies concerning dental anxiety have been performed. The aim of this project was to investigate how dental anxiety changes with aging. In a longitudinal population study of women in Göteborg, Sweden, starting in 1968, 1462 women aged 38 to 54 participated. A representative subsample of 778 women took part in a psychiatric examination where an investigation of dental anxiety was included. The same questions were also included when these women were re-examined in 1974, 1992, and 1996. Three hundred seventy-five women were still eligible for investigation in 1996. In 1968-69, 48 (12.8%) of the participating women assessed themselves as "very afraid" or "terrified" when visiting the dentist, and in 1996 the frequency was 21 (5.6%) among the same women. In 1968-69, 180 women (48%) reported no dental anxiety when visiting the dentist, and 28 years later the frequency was 230 (61%). In the three youngest age groups, dental anxiety decreased significantly (p < 0.001) over the 28-year period. Older compared with younger women reported significantly less dental anxiety, and this was an age effect rather than a cohort effect. Thus, this longitudinal study supported the hypothesis that dental fear, like many other general and specific phobias, declines with age.

Age Distribution↗

COPD prevalence in Salzburg, Austria: results from the Burden of Obstructive Lung Disease (BOLD) Study.

BACKGROUND: COPD is projected to be the third leading cause of death worldwide by 2020. The Burden of Obstructive Lung Disease initiative was started to measure the prevalence of COPD in a standardized way and to provide estimates of the social and economic burden of disease. METHODS: We surveyed a gender-stratified, population-based sample of 2,200 adults >or= 40 years of age. The findings of prebronchodilator and postbronchodilator spirometry, as well as information on smoking and reported respiratory disease was recorded. Irreversible airflow obstruction was defined as a postbronchodilator FEV(1)/FVC ratio of < 0.70. RESULTS: For 1,258 participants with good-quality postbronchodilator spirometry findings, the overall prevalence of COPD at stage I or higher was 26.1%, and was equal in men and women. The prevalence of COPD stage II or higher (FEV(1)/FVC ratio, < 0.7; FEV(1), < 80% predicted) was 10.7%. The prevalence of COPD stage I+, and COPD stage II+, increased with age and cigarette smoking. A doctor diagnosis of COPD was reported by only 5.6% of participants. CONCLUSION: One quarter of residents of Salzburg County (Austria) who were >or= 40 years of age had at least mild irreversible airflow obstruction. The high prevalence of COPD highlights the impending health-care crisis that will affect many countries as a result of this greatly underappreciated condition.

Adult↗

Protein structure prediction in structure based drug design.

The human genome and other genome sequencing projects have generated huge amounts of protein sequence information. Recently, a structural genomics project that aims to determine at least one representative three-dimensional structure from every protein family experimentally has been started. Homology modeling will play an essential role in structure based drug design such as in silico screening; because based on these representative structures the three-dimensional structures of the remaining proteins encoded in the various genomes can be predicted by homology modeling. The results of the last Critical Assessment of Techniques for Protein Structure Prediction (CASP5) demonstrated that the quality of homology modeling prediction has improved; reaching a level of reliability that biologists can now confidently use homology modeling. With improvements in modeling software and the growing number of known protein structures, homology modeling is becoming a more and more powerful and reliable tool. The present paper discusses the features and roles of homology modeling in structure based drug design, and describes the CHIMERA and FAMS modeling systems as examples. For a sample application, homology modeling of non-structural proteins of the severe acute respiratory syndrome (SARS) coronavirus is discussed. Many biological functions involve formation of protein-protein complexes; in which the protein molecules behave dynamically in the course of binding. Therefore, an understanding of protein-protein interaction will be very important for structure based drug design. To this end, normal mode analysis is useful. The present paper discusses the prediction of protein-protein interaction using normal mode analysis and examples of applications are given.

Amino Acid Sequence↗

Why are shortages of hospital RNs concentrated in specialty care units?

This article is the first in a series examining the interplay between the aging of the nurse workforce and other factors driving the growing nursing shortage that are already affecting some specialty areas. Nearly 60% of the current RN workforce is over 40 years of age; and the percentage of RNs under age 30 has fallen by nearly 40% since 1980. The total number of FTE RNs is projected to shrink after 2010, likely resulting in shortages of RNs "when the large baby-boom generation of RNs starts to retire." Because ICUs have historically attracted younger RNs, the rapid decline in the number of RNs in the workforce under age 30 plays a large role in explaining the development of shortages in the ICU. The growing difficulties staffing operating rooms and other peri-operative services is seen as related to the aging work force as more diploma prepared nurses have been attracted to this specialty because they had educational exposure to this area.

Adult↗

Barbiturate spindle activity in the thalamic lateral ventro-posterior nucleus and the second somato-sensory area of the cortex.

(1) Barbiturate spindles recorded from the second somato-sensory cortical area (SII) were similar to spindles in the primary somato-sensory area (SI) both with respect to incidence, duration of each spindle and per cent spindle time. The spindle wave amplitude was smaller in SII. The highest spindle wave amplitude was observed in the anterior part of SII which receives input from nucleus ventralis postero-lateralis (VPL). No spindle activity was observed in the posterior part of SII which receives input from the posterior nuclear group (PO) of the thalamus. (2) Barbiturate spindles recorded from a locus in VPL and its projection area in SII were cross-correlated. The analysis resulted in high cross-correlation factors, indicating that a considerable degree of spindle wave synchrony existed between the spindles. This wave synchrony was reduced by moving the cortical electrode a short distance. (3) Cortical spindles recorded from corresponding sites in SI and SII were cross-correlated, and gave a high cross-correlation coefficient. This synchrony was markedly reduced if one of the electrodes was moved a few millimetres away from the optimal point. (4) Spindles started simultaneously in corresponding sites of SI and SII. A high degree of coincidence was found also between spindles in a VPL locus and the corresponding projection site in SII. Local anaesthesia applied to or total removal of SI failed to influence the spindle activity in SII and vice versa. Similarly, the SI-SII synchrony survived a deep incision cutting all connections between the two areas. (6) It is suggested that spindles in corresponding sites of SII and SI have a common thalamic pacemaker which probably projects to both areas by axonal branching.

Anesthesia, General↗

Starting to think digitally: evaluation of web browser-based presentation of images at a Rad Path conference in a traditional film-based environment.

Images have traditionally been projected from film to a large-screen television at the weekly Rad Path conference at University of Medicine and Dentistry of New Jersey-New Jersey Medical School. An alternative system was developed to digitally transfer computed tomography (CT) scans and magnetic resonance images (MRI) into a standard PC format, and present them at the conference in a hypertext markup language (HTML) document via a laptop computer and liquid crystal display (LCD) projector. Resident and attending physicians were given a questionnaire about the differences between the two modes of presentation. Their responses are presented here.

Attitude to Computers↗

International study of asthma and allergies in childhood. Results of the first phase of the I.S.A.A.C. project in Pamplona, Spain.

The international study of asthma and allergy in childhood was designed for the epidemiological investigation of asthma, by means of a standardized methodology. It was started in 1989, as a consequence of very different results obtained in previous epidemiological studies, of which none could be considered as definitive. First, a standardized survey was performed, in order to determine the prevalence of asthma in the United Kingdom, New Zealand and Australia, and subsequently several countries joined them, Spain being one of them. The first objective was to discover the prevalence and severity of bronchial asthma in children who lived in different countries, and to compare the results. Also, it was intended to obtain baseline measurements, in order to assess future trends in asthma prevalence and severity, and to facilitate a base for a subsequent phase of etiologic investigation. For this study, following a protocol previously established, a written survey and a video-survey were given to children aged 13 and 14, and a written survey to the parents of the children aged 6 and 7. All the surveys were performed during the school year 1993-1994. A total of 8,087 surveys were conducted in 53 schools from Pamplona and neighbouring towns. Among the group of children aged 13 and 14, 5.3% had a crisis in the study period, whereas 4.4% suffered from an acute attack. This prevalence was not as high in children aged 6 and 7, for whom the percentages were 3.3% and 3.2%, respectively. We found lower prevalences in the two groups in relation to other countries, and we attribute this result, on one hand to the accessibility to doctors in our area, and on the other hand, to early diagnosis of the disease by specialists, periodic control and suitable etiologic treatment.

Adolescent↗

[International scientific project: the investigation of pregnancy and childhood].

ELSPAC, European Longitudinal Study of Pregnancy and Childhood, is the first prospective geographically based series of population studies which was designed to start during pregnancy and to follow up the cohort of births till the age of 7 years. This study was initiated at the WHO(EURO) meeting in 1985 in Moscow. Various centers in Europe contributed to it in the Czeck Republic, Greece, Russia, Slovakia, Spain, United Kingdom, Ukraine. The coordination office of ELSPAC is the Division of Paediatric and Perinatal Epidemiology at the Institute of Child Health at the University of Bristol, UK. Extensive piloting and validating of measures enabled the study to go into the field in selected areas at the end of 1990--beginning of 1991. The strength of this survey relies on the fact that different correlations in different countries may be useful in ascertaining casual relationships and the major thrust of research is to assess the impact of psychosocial factors on child health and development.

Child↗