RESUMO
Although it is recognised that a gluten-free diet has many social implications for coeliac disease patients, not much is known about how such patients actually manage these implications in their everyday interactions. This article examines how dietary restrictions are treated by patients and their families. Data from recorded mealtime conversations of seven Dutch families with children suffering from coeliac disease were analysed using discursive psychology. We found two main discursive strategies by which patients and their families manage the diet during mealtime interactions. A reference to pleasure is used to manage the tension between the child's agency and parental responsibility in the face of health requirements and, by softening the denial of food, the diet is normalised and treated as a shared family practice. The analysis shows that the gluten-free diet is demedicalised and treated as a matter of choice rather than prescription. We conclude with the practical implications of these findings.
Assuntos
Doença Celíaca/dietoterapia , Saúde da Família , Preferências Alimentares , Cooperação do Paciente/psicologia , Psicologia Social/métodos , Adulto , Criança , Dieta Livre de Glúten , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Refeições/psicologia , Países Baixos , Relações Pais-FilhoRESUMO
The Centre for BioSystems Genomics (CBSG) is a Dutch public-private partnership in plant genomics active in potato and tomato research and exploitation. Its Societal Interface Group (SIG) has been developed to inform its communication strategy and governance practice. This new instrument identifies and discusses early signals from society by bringing together people from different societal backgrounds with members of CBSG management. This interactive learning process facilitates the inclusion of public concerns and needs in scientific developments in the field of plant genomics, and simultaneously enables genomics scientists to search for more societal aims, meanings, and starting points for their research agenda. Analysis of the SIG sessions revealed that the input of public expertise is not threatening or irrational, but provides the opportunity to harness the creative potential of future users highly relevant for the development of societal practices in which plant genomics plays a role.
RESUMO
In this work, using experiments, we investigate the role of the name of a technology on the informed evaluation of that technology. We argue that a name can influence interpretations by activating cognitive structures. Using genomics-accelerated breeding as a case, we show that the name 'genomics' makes people evaluate related information as similar to genetic modification. Replacing the name 'genomics' with 'natural crossing' causes evaluations similar to those for traditional breeding. The results show that a name can have a strong influence on public attitudes, and we call for more consideration in choosing a name for a technology.
RESUMO
Nutrigenomics is a subspecialty of nutrition science which aims to understand how gene-diet interactions influence individuals' response to food, disease susceptibility, and population health. Yet ethical enquiry into this field is being outpaced by nutrigenomics bioscience. The ethical issues surrounding nutrigenomics face the challenges of a rapidly evolving field which bring forward the additional dimension of crossdisciplinary integrative research between social and biomedical sciences. This article outlines the emerging nutrigenomics definitions and concepts and analyzes the existing ethics literature concerning personalized nutrition and presents "points to consider" over ethical issues regarding future nutrigenomics applications. The interest in nutrigenomics coincides with a shift in emphasis in medicine and biosciences toward prevention of future disease susceptibilities rather than treatment of already established disease. Hence, unique ethical issues emerge concerning the extent to which nutrigenomics can alter our relation to food, boundaries between health and disease, and the folklore of medical practice. Nutrigenomics can result in new social values, norms, and responsibilities for both individuals and societies. Nutrigenomics is not only another new application of "-omics" technologies in the context of gene-diet interactions. Nutrigenomics may fundamentally change the way we perceive human illness while shifting the focus and broadening the scope of health interventions from patients to healthy individuals. In resource- and time-limited healthcare settings, this creates unique ethical dilemmas and distributive justice issues. Ethical aspects of nutrigenomics applications should be addressed proactively, as this new science develops and increasingly coalesces with other applications of genomics in medicine and public health.
Assuntos
Nutrigenômica/ética , Nutrigenômica/métodos , Humanos , Fenômenos Fisiológicos da Nutrição/genética , Medicina Preventiva/ética , Medicina Preventiva/métodos , Saúde Pública/ética , Saúde Pública/métodosRESUMO
We investigate how people form attitudes and make decisions without having extensive knowledge about a technology. We argue that it is impossible for people to carefully study all technologies they encounter and that they are forced to use inferences to make decisions. When people are confronted with an intangible abstract technology, the only visible attribute is the name. This name can determine which inferences a person will use. Considering these inferences is important: first, a name will reach consumers before detailed information, if any, will. Second, if detailed information reaches consumers, the hard-to-comprehend information is processed using pre-activated attitudes and beliefs. Using the available literature, we explore the impact a name can have on the interpretation of a technology. We argue that science communication can benefit from trying to develop a name for a technology that activates proper beliefs to guide non-experts to a more meaningful understanding of it.
Assuntos
Comunicação , Genômica , Nomes , Opinião Pública , Tecnologia , Tomada de Decisões , HumanosRESUMO
This is an empirical study of the way in which celiac disease patients manage the risk of gluten intake in their everyday life.The article examines naturally occurring conversational data in order to study how patients cope interactionally with constantly being at risk in their day-to-day living. They reject quitting the diet as a valid option, and instead construct a 'diet world' in which dietary transgression is presented as an integrated part of everyday life. In this way, patients can manage occasional diet lapses without putting the validity of the diet itself at stake. By examining how the gluten-free diet is treated in interaction, we find out more about the pre-existing everyday strategies that have to be taken into account when new therapies are being introduced.
Assuntos
Adaptação Psicológica , Doença Celíaca/dietoterapia , Dieta Livre de Glúten , Internet , Cooperação do Paciente/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Grupos de AutoajudaRESUMO
Information regarding the method of production of food products influences the decision-making process of consumers. The aim of this study is investigate to what extent information about genomics biases consumer decision making. We investigate the exact source of the biasing nature by separating the effect on consumer beliefs and the salience of those beliefs. The effect of information is tested through an information condition concerning two breeding methods, namely classical breeding and breeding enabled by genomics. The results show that consumer preferences are influenced by the information on production technology. More specifically, the consumer preferences change because consumers alter the salience of their beliefs towards the product.