Can data collection during the grieving process be justifiable?

Abstract

Research has shown that there are a number of competing theories regarding the use of bereaved people for research purposes. One view emphasizes their vulnerability, weakness and inability to take part in decision-making. Another is that there is an infringement of rights if people are denied the freedom of choice to take part in research. This article considers issues concerned with data collection from recently bereaved relatives who were at some stage of the grieving process. The participants were interviewed as part of the OXMIS study which aimed to identify the incidence of myocardial infarction in Oxfordshire. A total of 142 interviews took place (59 home visits and 83 telephone interviews). Of the cases not interviewed, sufficient information was gained in 94% from other sources to fulfil the required criteria. The perceived benefit or apparent risk of vulnerable groups participating in research is discussed in light of the study results.