The ESRC Centre for Genomics in Society (Egenis) produces first class social science research on the social impact of developments in genomic science.ESRC Centre for Genomics in Society - Egenis
Some of the most fundamental questions associated with developments in genetic research and its application are being addressed by Egenis, the ESRC Centre for Genomics in Society. Egenis is part of the ESRC Genomics Network (EGN), dedicated to examining the development and use of the science and technologies of genomics. The mission of Egenis is to develop research that will be recognised as a key resource for the social scientific understanding of the nature, implications and impact of genomic science and technology.
Egenis is uniquely grounded in interpretive skills, drawing on the sociology and philosophy of biology, science and medicine. Our interdisciplinarity provides us with conceptual and methodological tools to engage with the rapidly evolving genomic and biological sciences and their social and ethical implications.
Some of the ongoing research at Egenis includes:
The regulatory role of bioinformatics: A case of soft governance
This project focuses on the institutionalisation of bioinformatic tools for data sharing. A sociological study of the rise of bioinformatics will shed light on how this field and its practitioners have become institutionalised within biological research, and with what consequences for the regulation and practice of biomedical science and its applications.
Selling genetic tests online: User perspectives on direct to consumer psychiatric genetic tests
This research examines the intersection of two important emerging technologies: genetic testing and the internet. The latter provides consumers with direct access to genetic tests and personal genetic information, potentially unmediated by healthcare professionals. These developments are raising critical questions about patient empowerment, 'democratization' of science, impacts on health systems, regulation, and the ability of consumers to make health care and lifestyle decisions on their own, or in improved partnership with healthcare providers. The current and imminent introduction of genetic tests for serious psychiatric disorders presents an important arena for examining these and related questions regarding the nature and impacts of direct-to-consumer access of diagnostic and predictive individual genetic information.
Mechanisms of fraud in biomedical research
This cooperative project centres around a workshop series on the topic of fraud in the biomedical research world. The workshops aim to investigate the problems — both in their present and historical forms — of fraud and scientific misconduct, but also of the problem that scientific results occasionally need a long time to be stabilised and recognised as reliable or acceptable in a particular scientific paradigm.
Genomics and the politics of identity
Traits are often taken as markers for a person and the genome seems to define who and what a person is. The uptake of genomic tests and what can be learned from them about one's self and others is serving traditional images of what makes people who they are. This project is exploring the relevance of genomic knowledge to human self-understanding.
Is easier better? Public attitudes towards non-invasive prenatal diagnosis
The project on non-invasive prenatal diagnosis is investigating public perceptions of this developing technology. The project aims to access the thinking of ordinary people so that their views and perspectives are represented alongside those of the scientists developing the technology, and the clinicians who will be called upon to implement the tests. The aim is to feed these views back to the policy-makers, scientists, and clinicians currently engaged in making decisions about these emergent technologies.
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Among completed research projects are:
Stem cell research in context
This project explored how social and cultural environments influence pathways of research and scientific landscapes in the life sciences. The illustrative case is a comparison of the regulation and the practice of stem cell science in the UK and Germany, investigating how the infrastructure of stem cell science and its research questions are influenced by national and international regulation.
The use of family history in the risk assessment and primary prevention of heart disease
This research examined the psychological, behavioural and economic impacts of including a family history of heart disease into routine coronary heart disease (CHD) risk assessments, the impact of being identified as ‘high risk’ of CHD over the short and longer term, and the ways in which family history of heart disease impacts on the motivation to seek treatment and to engage in behaviour change.
