Game playing and ‘ethics hype’
15 January, 2018
While ‘hype’ surrounding biomedical research has been abundantly discussed, ‘ethics hype’ has been much less talked about. I’m not saying it has been totally ignored, and note Claufield’s article in the Hastings Centre Report by Caulfield. In this paper he argued that ‘ethics hype’ is a problem because it creates a distortion in the nature and magnitude of the ethical and social implications of biomedical research. This, he says can ‘engender a public and funding backlash. If the predicted sky falling does not materialize, the public may stop listening’.
While Caulfield raises the issue of ‘ethics hype’ as a medical sociologist with some STS training, I think we need to unpack the idea at this juncture. ‘Hype’ as related to biomedical research, that is not just vacuous or in need of fixing but rather part of the very process of innovation and research, as notably Pickersgill, and Hedgecoe and Martins aruge.
To understand how ethics hype might be related to the biomedical innovation process, we need to look to the sociology of expectations, which are built on the observation that the active generation of expectations surrounding biomedical research are not short-sighted hype, but often exaggerated in order to gain sufficient interest, get public support, enroll necessary allies and further secure investment into its development.
Previously I explored the ‘hyped’ media/press release reporting of some research that used brain-scanning to try to ‘communicate’ with severely brain-injured patients so as to help with their diagnosis and prognosis. More recently newspapers are now reporting how researchers can ‘talk’ to locked-in patients. I conducted an analysis of associated ethical literature of which there are is a lengthy debate.
We know from the sociology of expectations, that the hype surrounding the brain-scanning technology itself created a protected space for networks and collaborations of scientists, clinicians, industry and stakeholders to secure further funding. But what about the ethics? Reflecting on this, I think we can say that the protected space created by the hype also helped ethicists and social scientists, since they too can ‘inhabit’ it and use it to garner funding. What I mean is that the hype promotes the technology, but concurrently a case can also be made for an increasing need to explore the socio-ethical issues. Additionally, we can also argue that by exploring more ethical/social issues within this area, it enacts a vision that this particular type of research holds an abundance of ethical issues which need to be further considered – therefore leading to more funding opportunities to explore the ethical issues in more depth (creating an ‘ethics hype’).
I’m not arguing here, that the research is without ethical issues. However, as expectations attached to biomedical research can be integral to the innovation process, so too can the expectations surrounding the associated ethical/social issues. And what’s more, these ideas about ethics hype now seem to be replaying in my current work exploring the ‘hype’ surrounding the UK 100.000 Genomes Project. What was most interesting from interviews I conducted with those involved in this project was that, despite a burgeoning ethical/social literature in this area, many of the ethical/social issues seem to be under control. Don’t get me wrong - there are issues, and they are real and need to be dealt with, but I’m not sure if we could argue that they are reflective of the extensive ethical/social literature. Rather, I propose, could it be possible that the reason so much is published in this area relates to the ‘secured funding space’ created by ‘genohype’, which opens its doors to ethics/social science scholars and research opportunities.
There is a need to re-emphasize that debating ethical issues is by no means a bad thing – indeed raising and debating ethical issues associated with any new technology can only enhance our understanding of innovation in research. We need to be aware that it is not just hype related to the biomedical research which plays a role in the innovation process, but that our discourses in ethics and the social sciences also frame the process of innovation development. I think it’s important that we view discussions about ethical/social issues within this context so we can begin to understand their value within biomedical research, and to the related innovation process.
Gabrielle Samuel is Social Science/ Ethics Research Fellow with interest in health at King's College London.