In search of the Holy Grail: Media discourse and the new human genetics

It has widely been recognized that the media play a key role in framing debates about genetic issues. This paper provides an overview of the major areas of debate within the social scientific literature on media, public understanding of science and human genetics. It evaluates current approaches to assessing the role of the media in influencing public policy debates. It argues that an analysis of the strategies of news sources should occupy a central role in furthering understanding about the ways in which various social actors seek to influence public policy agendas. At present, within the field of human genetics, only a handful of researchers have systematically examined the strategies of news sources from the perspective of the sources themselves. While recent research has focused upon identifying the major sources and how they are used in science reporting, there remains much to be done in uncovering the processes of negotiation and contestation among social actors prior to issues gaining media coverage.     

Notes and issues: The Gene Shop at Manchester airport

The 'Gene Shop' was opened for one year, February 1997-98, in Manchester airport as part of the EUROSCREEN 2 project funded by the European Commission. Information about genes and genetic conditions was provided, on a drop-in basis, by touchscreen computer programmes, static displays, written materials and by a full time co-ordinator and a rota of staff of health visitors and doctors. The Gene Shop was intended to provide public education in genetics and attracted 10,500 visitors. The Gene Shop could be seen as a success when evaluated in terms of its stated aims but it embodied a deficit model of public understanding with content which portrayed developments in the science of genetics and its applications as an unproblematic progression.     

Limited Company

ABSTRACT

This paper looks at the attitudes that scientists hold toward their use of animals, and at some implications for the welfare of laboratory animals. The framework for this analysis is recent changes in the law regulating the use of animals in British science. We note how ambivalent many scientists are about the way they perceive the animals they use, and the moral dilemmas such use poses. We argue, however, that the legislation itself cannot mediate improvements in animal welfare, as it is inevitably policed by the scientific community itself and thus dependent upon values and social relationships within science. We also argue that debates about the promotion of lab animals' welfare tend to use the distancing stance of science; they focus on scientific studies of welfare and behavior, but ignore the context. An important part of that context is the relationships between humans and animals in the lab, which should be taken into account more fully if animals are to benefit.     

Beyond the genome: Reconstituting the new genetics

The mapping and sequencing of the human genome has been the 'Holy Grail' of the new genetics, and its publication marks a turning point in the development of modern biotechnology. However, the question remains: what has been the impact of this discovery on how biotechnology develops in science, and in society at large? Using concepts developed in the social studies of science and technology, the paper begins by rehearsing the historical development of the Human Genome Project (HGP), and suggests that its translation into genomics has been achieved through a process of 'black-boxing' to ensure stabilization. It continues by exploring the extent to which the move to genomics is part of a paradigm shift in biotechnology resulting from the conceptual and organizational changes that have occurred following the completion of HGP. The discussion then focuses on whether genomics can be seen as part of the development of socially robust knowledge in late modernity. The paper suggests that there is strong evidence that a transformation is indeed taking place. It concludes by sketching a social scientific agenda for investigating the reconstitution of the new genetics in a post-genomic era using a 'situated' analytic approach based on an understanding of techno-scientific change as both emergent and contingent.     

Research in context

Do young people understand cellular genetics?; Colin Wood-Robinson, Jenny Lewis, and John Leach

Do young people understand cellular genetics?; Din Yan Yip

Improve your students' understanding of ecology; Kathleen Hogan     

Constructivism,sociology and the new genetics 1

In this paper it is argued that the social sciences, especially sociology, cannot afford to ignore the challenge that is coming from the new genetics. This will involve rethinking some of the epistemological assumptions of modernist social science, which has always assumed the separation of nature and society. The argument made in this article is that a qualified version of constructivism points to a possible opening within the sciences for a reorientation for sociology and in a way that the new genetics can be addressed in a serious way.     

The Impact of Guide Dogs on the Identity of People with Visual Impairments

ABSTRACT

This paper explores the effect of peoples' association with guide dogs on how they understand and feel about themselves and how they are regarded by those with whom they interact. The concepts of personal, collective, and social identity are used to situate the discussion. Of central importance is the way working with a guide dog shapes public interaction and how owner' self definitions and social identities are extended by being intimately involved in the owner—dog team.     

Genomics research in the UK—the social science agenda

Abstract

We sketch the development of UK genetics and genomics research, and emphasize the UK's key role in the international genetics and genomics research community. We highlight in particular the part played by the UK's Research Councils and other funders. With the move from genomics to post-genomics research, the field is diversifying, and interdisciplinarity becomes increasingly important, as traditional disciplinary boundaries become blurred, or break down, in the face of newly emerging sciences. We consider the changing nature of health and ill health in the developed and developing world, and questions about the complex nature of the relationships between genes and the environment, and their future implications for human health and human populations. We describe the ESRC's activities, stressing the importance of both the social, ethical and legal issues raised by these emerging disciplines, and of public engagement. Finally, we link the data handling and analysis issues raised by these emerging sciences, with other new research areas, in particular the UK's e-Science programme.     

Closing the Gap: Inverting the Genetics Curriculum to Ensure an Informed Public

Over the past 20 years, the focus of national efforts to improve K-12 science education has ranged from curriculum and professional development of teachers to the adoption of science standards and high-stakes testing. In spite of this work, students in the United States continue to lag behind their peers in other countries. This underperformance is true for genetics, as well as for science and math in general, and is particularly worrisome given the accelerating need for scientists and engineers in our increasingly technology-driven economy. A scientifically literate public is essential if citizens are to engage effectively with policymakers on issues of scientific importance. Perhaps nowhere is this conjunction more personally meaningful than in human genetics and medicine. Rapid changes in our field have the potential to revolutionize healthcare, but the public is ill prepared to participate in this transformation. One potential solution is to modernize the genetics curriculum so that it matches the science of the 21^st century. This paper highlights changes in human genetics that support a curricular reorganization, outlines the problems with current genetics instruction, and proposes a new genetics curriculum.     

Putting the future in its place: Comparing innovation moments in genetic diagnostics and telemedicine

Health care professionals today struggle to establish strategic directions for the future, in part because of the continuing uncertainties engendered by innovations in the diagnosis and treatment of disease. Emerging technologies such as genetics and information technology pose acute challenges for healthcare professionals in respect to questions of service provision, organizational change and the meaning of health and illness. This paper contrasts two areas of health technology development in the UK, genetics diagnostics and telemedicine, and asks how diverse actors attempt to manage innovation. Several key dimensions are elaborated for understanding the future-orientated dynamics at work in emerging health innovation areas. In so doing, this paper examines how the unique attributes of both areas entail differing opportunities and constraints for mobilizing 'the future'.     

Of urines and purines – a life in separation science

Abstract

This paper is a personal review of the role developments in separation science over the last four decades have played in the diagnosis and understanding of purine and pyridine metabolism particularly in man. In 1967 the separation of nucleotides was used to demonstrate a new chromatography technique. This technique became known as HPLC and which continues to dominate the analysis of purines etc. The resolution and quantitation offered by even the earliest HPLC systems completely changed our understanding of matters such as nucleotide instability in cells and tissues, diagnosis of in born errors, etc. Capillary Electrophoresis also enabled high resolution as well as the quantitation of usual analytes such allantoin. Now LC-MS dominates the diagnostic field. This paper is based on the Anne Simmonds Lecture given by the author at PP17 in Gdansk in 2017.     

Exploring the post-genomic world: differing explanatory and manipulatory functions of post-genomic sciences

Richard Lewontin proposed that the ability of a scientific field to create a narrative for public understanding garners it social relevance. This article applies Lewontin's conceptual framework of the functions of science (manipulatory and explanatory) to compare and explain the current differences in perceived societal relevance of genetics/genomics and proteomics. We provide three examples to illustrate the social relevance and strong cultural narrative of genetics/genomics for which no counterpart exists for proteomics. We argue that the major difference between genetics/genomics and proteomics is that genomics has a strong explanatory function, due to the strong cultural narrative of heredity. Based on qualitative interviews and observations of proteomics conferences, we suggest that the nature of proteins, lack of public understanding, and theoretical complexity exacerbates this difference for proteomics. Lewontin's framework suggests that social scientists may find that omics sciences affect social relations in different ways than past analyses of genetics.     

Deconstructing the Animal Image: Toward an Anthropology of Animals

Abstract

Natural science tends to reduce animals to parts, ignoring such characteristics as “inwardness,” ideas, and culture. The social sciences, such as sociology and anthropology, generally confine themselves to human subjects. Even those who study human-animal interactions tend to view animals as passive objects that are acted upon or thought and felt about. Scholars in the humanities assume that sociality and culture do not exist outside the human realm. The author calls for the development of a true anthropology of animals that studies and elucidates, to the extent possible, the animal Other.     

When pharmacogenomics goes public

So far the post-marketing bioethical implications of pharmacogenomics have been largely overlooked. Developing on a critical literature review, this paper argues that the post-marketing implications of pharmacogenomics will crystallize the bioethical implications of genetics in general to a wider public, and that these implications will be stretched to their limits when commonly used pharmaceuticals also appear to become public genetic information markers owing to their therapeutic specificity. Scientists, politicians and regulatory agencies need to focus heavily on these post-marketing issues. Otherwise, there is a substantial risk that the positive therapeutic prospects of pharmacogenomics will not survive, owing to a lack of acceptance and understanding, and fear on the part of the general public.     

Metasynthesis of Youth Suicidal Behaviours: Perspectives of Youth,Parents, and Health Care Professionals

BackgroundYouth suicide is a major public health issue throughout the world. Numerous theoretical models have been proposed to improve our understanding of suicidal behaviours, but medical science has struggled to integrate all the complex aspects of this question. The aim of this review is to synthesise the views of suicidal adolescents and young adults, their parents, and their healthcare professionals on the topics of suicidal behaviour and management of those who have attempted suicide, in order to propose new pathways of care, closer to the issues and expectations of each group.ConclusionThe violence of the message of a suicidal act and the fears associated with death lead to incomprehension and interfere with the capacity for empathy of both family members and professionals. The issue in treatment is to be able to witness this violence so that the patient feels understood and heard, and thus to limit recurrences.     

Science,industry and the laity: Towards a knowledgeable society for biotechnology

This paper is concerned with the task of developing a 'knowledgeable society' for biotechnology. This is hindered by the fact that the scientific and commercial communities often engage in separate discourses from that which engages the general public. Different concepts of knowledge ('knowing') and learning underpin preoccupations and concerns in these three spheres, and different logics and assumptions about knowledge often apply. The paper begins by highlighting the key issues that exercise people in the public domain, and in relation to science and industry. It then applies concepts of knowledge, communication and learning to show how people in these domains construct issues differently. Finally, it makes some predictions and suggestions for how a more knowledgeable society may evolve.     

American Media Coverage of Animal Protection

ABSTRACT

This is the first in a series of papers that will explore the role of the American media in animal protection. This paper tracks the history of media coverage of animal issues from the early American humane movement of the last century to the animal rights movement of today. In addition, research conducted on trends in print media coverage is presented and reviewed. Future papers will evaluate the media's involvement in social movements, the use of advertising to promote animal protection, and the impact of media coverage on the outcome of public policy decisions concerning animals.     

The Social Life of Death on Delhi's Streets: Unclaimed Souls,Pollutive Bodies,Dead Kin and the Kinless Dead

ABSTRACT

How does the status of ‘street children’ in life inflect the narrative representation of their deaths? Street-dwelling children's interactions with death in North India reveal much about how their identities are produced in public domains. In this paper, I examine several instances of ‘homeless child’ death to illuminate the place of such subjects in society and urban space, and to interrogate the degree to which they can be rendered ‘recognizable’ or ‘grievable’, in Butler's (2010) terminology. In particular, I explore the presence or absence of kin in the ways that child death is narrated. I also explore the related question of how living ‘vagabond (aawara) children’ situate their status in narratives of death and loss. I conclude with discussions of how children negotiate their orientations towards death through ghost narratives, and of the space-, economy- and age-bound assignment of pollutive tasks once reserved for low castes to street-dwelling children.