Absurd decisions by ethics committees
This blog has been created to offer social scientists the opportunity to hold IRBs and University Research Ethics committees accountable for their decisions and to promote a conversation about the development of proportionate and appropriate forms of ethical regulation.
Over the last ten years or so, an American system designed for the protection of human subjects in biomedical research has increasingly been imposed on the rest of the planet through the hegemonic position of the USA in scientific research and publication. If you don’t play by US rules, you can’t collaborate with US scientists or publish in their journals. The problems in applying this model to the social sciences have been well-documented in the US and are increasingly emerging in other Anglophone countries like Canada, the UK and Australia, and in some of the Nordic countries that closely follow their policies. They are still having less impact in mainland Europe but researchers there report growing pressure to follow the US example.
Why is this model causing such problems? Basically because it has such a narrow view of ethics in application to social science research. The system has been set up to regard absolute protection of human subjects as its only legitimate goal – which is fair enough when there is a routine risk of causing mortal damage to them. However, in democratic societies, social sciences also have an important role in informing the public realm: inappropriate regulation of research – for example, in relation to ‘vulnerable’ individuals or groups – risks creating systematic areas of ignorance within a society about its own members and their experiences. If researchers are silenced, that vacuum is filled by rival social commentators, who may be less subject to the disciplines of science in the stories they tell and the conclusions they draw.
This model also fails to acknowledge that researchers have rights too, rights as citizens to examine and comment on their own society. Philip Hamburger, for instance, has argued that the IRB system in the US is fundamentally unconstitutional because it constitutes a form of government control over First Amendment rights to freedom of speech, rights that the US has always claimed to view as integral to its theory of democracy and the place of the public university. These may not always have been respected but they remain regulative ideals.
Human subjects’ protection needs to be balanced by respect for these competing rights and ethical goods. Unfortunately, many ethics committees lack the understanding and perspective to recognize this. They may be dominated by biomedical interests or, in some case, by paternalist health and social care professionals, who impose absurd restrictions and requirements that are incompatible with research at all. Two recent examples to reach me: a criminologist who spent months gaining the trust of a group of graffiti writers only to be told by his university that he had to get them all to sign consent forms before he could be allowed to research them; and an international student, proposing an ethnographic study of a regulatory inspectorate in his own country, with the agency’s agreement, to examine the social bases of corruption, who was told by his university that he would have to report any cases of bribe-taking to the agency management or the local police. I am no great fan of graffiti – but I can recognize that we are only likely to control it if we better understand its creators’ motivations. I may not approve of corruption but we won’t stop it unless we know how, when and why it happens – and we are not going to find out unless we can observe and record that.
The Academy of Social Sciences is planning to do some work on proportionate regulation and research ethics, and evidence of the need for this would be really helpful. We need to get our act together if this kind of regulation is not to strangle social science in this country just as much as the funding cuts!
I hope we can make this a space where the absurdities of ethics committees can be exposed and we can try to articulate alternative visions. Do share your experiences. This is also a good place to tell the community about interesting things that you have read elsewhere that would contribute to the debate.