In 2016 we secured a Wellcome Trust themed seed award to explore ethical decision-making in the field of health research which draws on social media data. There has been much discussion about the ethics of social media research, but less exploration of what was happening on the ‘ground’. The types of questions we wanted to look at related to how universities, funding bodies and publishing houses/journals were responding to the growing interest in using social media data for research purposes – have guidelines/policies been developed? And what about the need for ethical approval for such research to be conducted and/or published? Beyond this, we were also interested in exploring how researchers and research ethics committees made ethical decisions about social media research.
What we found was that, because the ethics of social media research is so complex, and because people’s views about it are so diverse, most institutions and researchers use the case-based, researcher-led best practice approach i.e., they leave it up to the researcher to decided what is deemed ethical and to justify that point of view – a so-called ‘personal ethics’
For those new to the field, this ‘personal ethics’ approach may seem daunting, with little guidance on how to act in certain circumstances. Moreover, if you are researching in a team of others who have not used these methods before, there may be few people to ask, and little forum for discussion. Turning to research ethics committee members is a good start, but our research suggested that they are often as much in the dark in terms of best practice as novel researchers themselves.
We have established this website to offer a forum for those struggling with social media research ethics type questions.
Biography
Dr Gabrielle Samuel
Gabrielle is a medical sociologist whose main interests relate to the ethical and social issues surrounding innovative healthcare technologies. At present she is Research Associate in the Department of Global Health and Social Medicine at King’s College London, where she is currently exploring regulatory, ethical and social issues of forensic DNA phenotyping. Prior to this, her work has explored ethical issues related to the UK 100,000 genomes project and to genomics in general. Gabrielle also holds a Wellcome Trust seed grant at Lancaster University which explores the ethical issues related to health research which uses social media data, particularly from the perspective of how research ethics committee members make ethical decisions about such research.
Dr Gemma Derrick
Gemma
’s research interests involve methods of research evaluation including academic notions of scientific and societal excellence in research and how these are measured.
More specifically, she is interested in research evaluation processes, frameworks and policy which includes expertise in national research audit exercises, such as the UK Research Excellence Frameworks; university rankings; wider returns from research; societal impact; bibliometrics; peer review; and the translation of research knowledge into evidence informed policymaking. She has a particular expertise in the health and medical research fields.
She employs a mixed-methods approach to her research which includes the combination of interviews, observation studies, bibliometrics, econometrics and/or social network analysis. She has an ongoing commitment and interest in translating her knowledge of these issues to other scientific disciplines and the development of relevant innovation policies.
Currently, Gemma is an ESRC Future Research Leader Fellow and is working on a project focusing on the evaluation processes surrounding the peer review of the “societal impact” of health and medical research. Her primary research focus is modelled on the UK REF2014 impact evaluation process. As the first evaluation framework to include a formal (20%) criterion for the evaluation of the societal “impact” of research, this represents the first empirical investigation of the evaluation of societal impact as a notion of research excellence. The large scale, mixed methods investigation employs a series of in depth, semi structured interviews with the REF2014 evaluators, bibliometric and network analysis and text analysis of EU and UK research policies via VOSviewer.