Boundaries and Battlegrounds: Negotiating Formal Ethical Approval for Research with Children and Young People

Abstract

The Nuremberg Code (1947) and the Declaration of Helsinki (1964) are both heralded as the result of what are now widely recognised as notorious examples of unethical research including the Tuskegee syphilis study from the 1930s to the 1970s and Stanley Milgram’s obedience research in the 1960s, not to mention the atrocities that took place during the Holocaust. These formal protocols and frameworks, developed in the United States and Western Europe, aim to guide the ethical conduct of human research and have seeped from governing medical research into other disciplines including the social sciences. These trends have led to the establishment of Research Ethics Committees (RECs) (known internationally by different terms: for example, Institutional Review Boards (IRBs) in North America) in a range of institutions including the United Kingdom’s National Health Service, research councils such as the Economic and Social Research Council (ESRC) and universities and Higher Education Institutions (HEIs) around the world.