Currently we work with a number of academic and user groups
Anneke Lucassen, Angela Fenwick, Kate Lyle, & Lisa Ballard;
We are moving to a world where data have a life beyond the individual; where the value and potential of data are ever-changing as technological developments bring new possibilities. This immortality of data raises new ethical and societal issues that society may not be prepared for.
The challenges of dealing with large volumes of personal data are increasingly apparent in many fields of practice, such as web data and genomic sequencing, although they may manifest in different ways. Rather than addressing these within the boundaries of our own disciplines as they emerge, we argue that what is needed is a holistic approach that treats all types of personal data as a whole. Focusing on the commonalities in the issues inherent within personal data will enables us to work collaboratively to develop a strategic approach for anticipating, managing and preventing future problems.
Anneke Lucassen & Lisa Ballard;
We are working to bring together data science and behaviour science groups to explore consent and confidentiality regarding routine access to core NHS data gathered during clinical care for research studies.
Based at the University of Exeter in the UK, Egenis is committed to providing research of the highest international standard into the nature, historical precedents, and philosophical, social and scientific implications of developments in contemporary biosciences.
ELSI Research Group, University of Groningen:
Conducts research on Ethical, Legal, and Social issues in Genetics. Meet the Groningen team.
Aims to improve ethical standards in healthcare practice and in medical research. It does this through education, research, and the provision of ethics support to health professionals and medical researchers.
A national forum for the discussion, by health professionals, of practical ethical problems encountered in the working lives of clinical genetics departments in the United Kingdom.
The national charity working to improve the lives of patients and families affected by all types of genetic conditions. They are an alliance of over 200 patient organisations.
Health, Technology and Society (HTS)
Led by Prof Susan Kelly, the Health Technology & Society (HTS) research group serves as a focus for interdisciplinary research involving social aspects of emerging medical technologies, particularly those relating to diagnosis and intervention, at the University of Exeter and beyond.
Is a non-profit think tank with a special focus on how genomics and other emerging health technologies can provide more effective, personalised healthcare and deliver improvements in health for patients and citizens.
INSPIRE is a five year, UK-wide initiative to engage medical and dental undergraduates with research. Coordinated by the Academy of Medical Sciences and supported by the Wellcome Trust, INSPIRE activities are designed and delivered locally by individual medical schools.
Southampton Ethics Centres (SEC):
Show-case the multi-disciplinary work already under way at the University, build on existing inter-disciplinary ethics teaching, and nurture inter-disciplinary research and outreach.
Aim to provide specialist information relating to many hundreds of different rare chromosome disorders and autosomal single gene disorders, to inform parents, carers and the professionals working with them
The Web Science Institute (WSI) brings together world-leading interdisciplinary expertise to tackle the most pressing global challenges facing the World Wide Web and wider society today. It is necessarily interdisciplinary, as much about social and organisational behaviour, as about the underpinning technology.