Motherhood and Apple Pie? Questioning Ethical Regulation in the Social Sciences and Humanities Robert Dingwall, Institute for Science and Society University of Nottingham

Not against ethical conduct in research Against the illegitimate generalization of a model of governance based on the particular history, risks and challenges that confront biomedical researchers A system based on the professional autonomy of researchers is not appropriate for the biomedical sciences. But a system based on an elaborate pre- emptive regulatory bureaucracy is equally inappropriate for the social sciences.

IRB Abuses A linguist seeking to study language development in a preliterate tribe was instructed by the IRB to have the subjects read and sign a consent form before the study could proceed. A political scientist who had bought a list of appropriate names for a survey of voting behavior was required by the IRB to get written informed consent from the subjects before mailing them the survey. A Caucasian PhD student, seeking to study career expectations in relation to ethnicity, was told by the IRB that African American PhD students could not be interviewed because it might be traumatic for them to be interviewed by the student. An experimental economist seeking to do a study of betting choices in college seniors was held up for many months while the IRB considered and reconsidered the risks inherent in the study. An IRB attempted to block publication of an English professor’s essay that drew on anecdotal information provided by students about their personal experiences with violence because the students, though not identified by name in the essay, might be distressed by reading the essay. A campus IRB attempted to deny an MA student her diploma because she did not obtain IRB approval for calling newspaper executives to ask for copies of printed material generally available to the public.

Research Governance in Biomedicine Nuremberg Code US and UK scandals National Institutes of Health 1966 Medical Research Council 1964 ESRC 2005

Nazi Medical Experiments Freezing / Hypothermia Genetics Infectious Diseases Interrogation and Torture Killing / Genocide High Altitude Pharmacological Sterilization Surgery Traumatic Injuries

Social Science and Abuse? No research technique that carries a risk of death or serious damage No power to impose ourselves on people – we are guests in people’s lives

Governance and Isomorphism The search for legitimacy Drivers for isomorphism –Coercive –Mimetic –Normative

ESRC Justification for REF Increase in interdisciplinary and transdisciplinary research Globalisation New codes in government departments New developments in COREC Public demands for transparency Demand for formality

The First Amendment Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

ECHR, Article 10 Everyone has the right to freedom of expression. This right shall include freedom to hold opinions and to receive and impart information and ideas without interference by public authority and regardless of frontiers. … The exercise of these freedoms, since it carries with it duties and responsibilities, may be subject to such formalities, conditions, restrictions or penalties as are prescribed by law and are necessary in a democratic society, in the interests of national security, territorial integrity or public safety, for the prevention of disorder or crime, for the protection of health or morals, for the protection of the reputation or the rights of others, for preventing the disclosure of information received in confidence, or for maintaining the authority and impartiality of the judiciary.

Press Sentiment As long as the liberty of the press continues unviolated, and the people have the right of expressing and publishing their sentiments upon every public measure, it is next to impossible to enslave a free nation. Men of an aspiring and tyrannical disposition, sensible of this truth, have ever been inimical to the press, and have considered the shackling of it, as the first step towards the accomplishment of their hateful domination, and the entire suppression of all liberty of public discussion, as necessary to its support. Freeman’s Journal, Philadelphia, 1787

Fetishizing Consent The sick role and mutual accountability –How to prevent sickness being a blank cheque on the well? The ethics of taxation The duty to participate in research The pragmatics of consent

Whose interests are served? Those who dislike democracy and sceptical inquiry Those who staff the growing human subjects bureaucracies Certainly not those whose voices are silenced…