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    ABSTRACT: Studies throughout Northern Europe, the United States and Australia have found an association between childhood attention deficit hyperactivity disorder (ADHD) and family socioeconomic disadvantage. We report further evidence for the association and review potential causal pathways that might explain the link. Secondary analysis of a UK birth cohort (the Millennium Cohort Study, N = 19,519) was used to model the association of ADHD with socioeconomic disadvantage and assess evidence for several potential explanatory pathways. The case definition of ADHD was a parent-report of whether ADHD had been identified by a medical doctor or health professional when children were 7 years old. ADHD was associated with a range of indicators of social and economic disadvantage including poverty, housing tenure, maternal education, income, lone parenthood and younger motherhood. There was no evidence to suggest childhood ADHD was a causal factor of socioeconomic disadvantage: income did not decrease for parents of children with ADHD compared to controls over the 7-year study period. No clinical bias towards labelling ADHD in low SES groups was detected. There was evidence to suggest that parent attachment/family conflict mediated the relationship between ADHD and SES. Although genetic and neurological determinants may be the primary predictors of difficulties with activity level and attention, aetiology appears to be influenced by socioeconomic situation.
    Journal of Child Psychology and Psychiatry 11/2013;
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    ABSTRACT: Retrospective recall about children's symptoms is used to establish early developmental patterns in clinical practice and is also utilised in child psychopathology research. Some studies have indicated that the accuracy of retrospective recall is influenced by life events. Our hypothesis was that an intervention: speech and language therapy, would adversely affect the accuracy of parent recall of early concerns about their child's speech and language development. Mothers (n = 5,390) reported on their child's speech development (child male to female ratio = 50:50) when their children were aged 18 or 30 months, and also reported on these early concerns retrospectively, 10 years later, when their children were 13 years old. Overall reliability of retrospective recall was good, 86 % of respondents accurately recalling their earlier concerns. As hypothesised, however, the speech and language intervention was strongly associated with inaccurate retrospective recall about concerns in the early years (Relative Risk Ratio = 19.03; 95 % CI:14.78-24.48). Attendance at speech therapy was associated with increased recall of concerns that were not reported at the time. The study suggests caution is required when interpreting retrospective reports of abnormal child development as recall may be influenced by intervening events.
    Journal of Abnormal Child Psychology 10/2013;
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    ABSTRACT: Prenatal screening programmes have been critiqued for their routine implementation according to clinical rationale without public debate. A new approach, non-invasive prenatal diagnosis (NIPD), promises diagnosis of fetal genetic disorders from a sample of maternal blood without the miscarriage risk of current invasive prenatal tests (e.g. amniocentesis). Little research has investigated the attitudes of wider publics to NIPD. This study used Q-methodology, which combines factor analysis with qualitative comments, to identify four distinct "viewpoints" amongst 71 UK men and women: 1. NIPD as a new tool in the ongoing societal discrimination against the disabled; 2. NIPD as a positive clinical application offering peace of mind in pregnancy; 3. NIPD as a medical option justified for severe disorders only; and 4. NIPD as a valid expansion of personal choice. Concerns included the "trivialisation of testing" and the implications of commercial/direct-to-consumer tests. Q-methodology has considerable potential to identify viewpoints and frame public debate about new technologies.
    Public Understanding of Science 08/2013; 22(6):730-44.
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    ABSTRACT: This article explains the key role of model organisms within contemporary research, while at the same time acknowledging their limitations as biological models. We analyse the epistemic and social characteristics of model organism biology as a form of "big science", which includes the development of large, centralised infrastructures, a shared ethos and a specific long-term vision about the "right way" to do research. In order to make wise use of existing resources, researchers now find themselves committed to carrying out this vision with its accompanying assumptions. By clarifying the specific characteristics of model organism work, we aim to provide a framework to assess how much funding should be allocated to such research. On the one hand, it is imperative to exploit the resources and knowledge accumulated using these models to study more diverse groups of organisms. On the other hand, this type of research may be inappropriate for research programmes where the processes of interest are much more delimited, can be usefully studied in isolation and/or are simply not captured by model organism biology.
    Endeavour 07/2013;
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    ABSTRACT: This paper discusses what it means and what it takes to integrate data in order to acquire new knowledge about biological entities and processes. Maureen O'Malley and Orkun Soyer have pointed to the scientific work involved in data integration as important and distinct from the work required by other forms of integration, such as methodological and explanatory integration, which have been more successful in captivating the attention of philosophers of science. Here I explore what data integration involves in more detail and with a focus on the role of data-sharing tools, like online databases, in facilitating this process; and I point to the philosophical implications of focusing on data as a unit of analysis. I then analyse three cases of data integration in the field of plant science, each of which highlights a different mode of integration: (1) inter-level integration, which involves data documenting different features of the same species, aims to acquire an interdisciplinary understanding of organisms as complex wholes and is exemplified by research on Arabidopsis thaliana; (2) cross-species integration, which involves data acquired on different species, aims to understand plant biology in all its different manifestations and is exemplified by research on Miscanthus giganteus; and (3) translational integration, which involves data acquired from sources within as well as outside academia, aims at the provision of interventions to improve human health (e.g. by sustaining the environment in which humans thrive) and is exemplified by research on Phytophtora ramorum. Recognising the differences between these efforts sheds light on the dynamics and diverse outcomes of data dissemination and integrative research; and the relations between the social and institutional roles of science, the development of data-sharing infrastructures and the production of scientific knowledge.
    Studies in History and Philosophy of Science Part C Studies in History and Philosophy of Biological and Biomedical Sciences 04/2013;
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    ABSTRACT: Individuals now have access to an increasing number of internet resources offering personal genomics services. As the direct-to-consumer genetic testing (DTC GT) industry expands, critics have called for pre- and post-test genetic counseling to be included with the product. Several genetic testing companies offer genetic counseling. There has been no examination to date of this service provision, whether it meets critics' concerns and implications it may have for the genetic counseling profession. Considering the increasing relevance of genetics in healthcare, the complexity of genetic information provided by DTC GT, the mediating role of the internet in counseling, and potential conflicts of interest, this is a topic which deserves further attention. In this paper we offer a discourse analysis of ways in which genetic counseling is represented on DTC GT websites, blogs and other online material. This analysis identified four types of genetic counseling represented on the websites: the integrated counseling product; discretionary counseling; independent counseling; and product advice. Genetic counselors are represented as having the following roles: genetics educator; mediator; lifestyle advisor; risk interpreter; and entrepreneur. We conclude that genetic counseling as represented on DTC GT websites demonstrates shifting professional roles and forms of expertise in genetic counseling. Genetic counselors are also playing an important part in how the genetic testing market is taking shape. Our analysis offers important and timely insights into recent developments in the genetic counseling profession, which have relevance for practitioners, researchers and policy makers concerned with the evolving field of personal genomics.
    Journal of Genetic Counseling 10/2012;
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    ABSTRACT: Community databases have become crucial to the collection, ordering and retrieval of data gathered on model organisms, as well as to the ways in which these data are interpreted and used across a range of research contexts. This paper analyses the impact of community databases on research practices in model organism biology by focusing on the history and current use of four community databases: FlyBase, Mouse Genome Informatics, WormBase and The Arabidopsis Information Resource. We discuss the standards used by the curators of these databases for what counts as reliable evidence, acceptable terminology, appropriate experimental set-ups and adequate materials (e.g., specimens). On the one hand, these choices are informed by the collaborative research ethos characterising most model organism communities. On the other hand, the deployment of these standards in databases reinforces this ethos and gives it concrete and precise instantiations by shaping the skills, practices, values and background knowledge required of the database users. We conclude that the increasing reliance on community databases as vehicles to circulate data is having a major impact on how researchers conduct and communicate their research, which affects how they understand the biology of model organisms and its relation to the biology of other species.
    Studies in History and Philosophy of Science Part C Studies in History and Philosophy of Biological and Biomedical Sciences 03/2012; 43(1):29-36.
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    ABSTRACT: Many children who display autistic behaviours at clinical levels do not receive a formal diagnosis. This study used qualitative methods to examine parental influence in pursuing or avoiding a diagnosis of autism spectrum disorder (ASD). The aim was to explore the function of ASD diagnosis for parents, and examine whether a diagnosis affected how parents perceived ASD. Seventeen parents participated in in-depth semi-structured interviews, which were analyzed using thematic and grounded theory approaches. Data analysis revealed dilemmas faced by parents: whether to act to retain the 'normal' status of the child or to 'normalize' the child through diagnosis and subsequent remediation. Parents who had received an ASD diagnosis for their children became proactive in trying to reduce stigmatization of ASD more widely, and in some cases actively advocating ASD diagnosis to other parents. Thus their actions may make it more likely that others will opt for diagnosis in the future.
    Clinical Child Psychology and Psychiatry 01/2012; 17(2):229-45.
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    ABSTRACT:   To compare social and behavioural outcomes between children formally diagnosed with autism spectrum disorders (ASD) with those of children who displayed autistic traits at preschool age, but remained undiagnosed as teenagers.   A secondary analysis of data from a birth cohort study, the Avon Longitudinal Study of Parents and Children (N = 13,944), in SW England. Children clinically diagnosed with ASD were identified from their medical records (n = 71). A comparison group, who displayed autistic traits at age 3-4, but without ASD diagnosis were also identified (n = 142). Social and behavioural outcomes in adolescence were compared between the two groups.   Children with ASD diagnoses were more impaired as teenagers that those in the comparison group on a range of measures of autistic-like behaviour. The developmental trajectory of prosocial behaviour showed that differences between the case and comparison groups increased dramatically in the preschool and early primary years, but that after 6 years the trajectories were similar.   The divergence of the clinically diagnosed group and the nondiagnosed group in measures of autistic-like behaviour increased with age. This study provides evidence that it may be difficult to distinguish preschool age children who exhibit autistic-like symptoms but improve, from those who go on to develop lifelong impairment.
    Journal of Child Psychology and Psychiatry 11/2011; 53(7):735-44.
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    ABSTRACT: Non-invasive prenatal genetic diagnostic (NIPD) tests are being developed using cell-free fetal DNA in the maternal circulation. NIPD tests avoid or reduce the need for invasive diagnostic procedures for conditions like Down syndrome. Discussion of ethical and social implications of these techniques is increasing. We report findings from a study of public attitudes relevant to the introduction of NIPD. A key aim was to examine the range of attitudes relevant to NIPD within a diverse sample. Qualitative analysis of written free text 'first responses' to a written neutral description of NIPD as part of a Q-methodology study conducted with a purposive sample of the UK population (n = 71). The majority (63%) of respondents described their first response as positive. However, respondents displayed ambivalence, expressing positive views of individual/medical rationale for NIPD and unease concerning public health rationale and societal implications. Unease related to eugenic reasoning underlying existing prenatal testing, 'too much control' in reproduction, commercial provision, information and support requirements for expanded testing, and limiting the use of testing. These findings suggest that regulating and monitoring commercial provision of NIPD services, and monitoring introduction and clinical use, are a public preference.
    Public Health Genomics 11/2011; 15(2):73-81.
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