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The first article in this series of two discussed the decision to establish a separate ethics committee for ALSPAC, a major longitudinal study of pregnancy and childhood, and the committee’s initial role in formulating policies for ethical conduct in obtaining data from questionnaires, biological samples, and clinical and environmental tests.1 This second article considers the consequences of some of these policy decisions in light of challenging issues that have arisen in the course of the study. As in the first article, the intention is to provide strategies that others may find useful when dealing with similar dilemmas.
Questionnaire design: “Did anyone have sexual intercourse with you before you were 16?”
The methodology of the ALSPAC study was explained in the first of these papers1 2; many of the data are gleaned from a series of detailed questionnaires. In one of the early questionnaires, a team investigating the aetiology of child abuse wanted to include a series of questions to explore the nature and extent of the link between parents who abuse their children and those who were themselves abused. Researchers hoped to ask the 14000 ALSPAC mothers several questions about any childhood sexual experiences they might have had. The ethics and law committee identified two concerns with this proposal: first, that some participants might find enforced recall of, and answering questions about, unhappy experiences distressing; and secondly, that some might find the questions offensive. That in turn raised the spectre of irate or shocked participants going to the media, with potentially damaging consequences for the study as a whole.
The committee asked for additional evidence about this project and its methodology. The psychologists responsible claimed that asking these questions was the only means of obtaining accurate and reliable information. Child abuse is a serious problem and the committee was convinced that a prospective study might shed important new light on its …
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