Data as Representation: Beyond Anonymity In E-Research Ethics
نویسنده
چکیده
As e-research practices begin to be adopted in medical and social science research, a number of ethical challenges are being encountered, and doubtless there are several hidden ethical implications which will emerge as e-science matures. Concerns so far have centred on anonymity, confidentiality and privacy. This article proposes a representational framework for thinking about data in e-research which takes it beyond this concern. It proposes five representational models which can be used to probe the ethical issues around data derived from human subjects, and as an ingredient in ethical decision-making in this domain. Introduction: E-Research There are currently initiatives in the UK, USA and Europe to extend to medical research and health care, as well as sociological and anthropological research, the tools and technologies of so called ‘e-science’ or e-research. This shift has brought with it ethical challenges which researchers, institutions and ethicists are hard-pressed to meet. The ethical challenges are generally placed under the rubric of privacy, confidentiality and anonymity. However, underlying these is a dominant conception of data as 1 Research for this paper was supported by ESRC grant RES-149-25-1022. 2 See for example www.nesc.ac.uk and http://www.eu-egee.org/.
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