Ethics committees: impediments to research or guardians of ethical standards?

Abstract

A research study focusing on the needs of and provision of care to children who might be expected to die during childhood was commissioned by the Department of Health. Parents of such children who were resident in four selected regional health authorities recruited themselves to the study through advertisements in voluntary group newsletters, and providers of statutory and voluntary care in the selected health authorities were interviewed. In this study I identified the correspondent of each of the 43 district ethics committees by telephone and sent him or her a letter. The letter was written with the guidance of an ethicist and sought advice about whether the research study required formal ethical approval, given that no children were to be interviewed and all the usual ethical safeguards would be adhered to. Letters were posted in two batches during May 1993.