Record linkage and the identification of long-term environmental hazards

The long-term effects of toxic substances in man that have been discovered so far have involved gross relative risks or bizarre effects, or have stumbled upon by chance or because of special circumstances. These facts and some recent epidemiological evidence together suggest that a systematic approach with better methods would reveal the effects of many more toxic substances, particularly in manufacturing industry. Record linkage is a powerful tool because it makes possible the correlation of indicators of exposure with indicators of the biological effect of such exposure in the same persons or in their progeny even after considerable periods of time have elapsed. A system of linked records exists in England and Wales which is at present used by research workers to follow up samples of persons defined in various ways, e.g. in respect of exposure to a suspected toxic factor. In this way hypotheses about substances causing cancer or other lethal effects can be tested. It is suggested that there are two additional ways in which record linkage techniques could be used to identify substances with long-term toxic effects: the first would be by setting up a register of women employed in industry during pregnancy and linking this register to records of the occurrence of congenital malformations and of stillbirth or death in their children; the second would be to follow samples of workers in manufacturing industry, notably those engaged in the manufacture of products from raw materials including the chemical industry, to death and to the development of cancer. Regular analyses of material from these two systems of linked records would provide the basis for a monitoring system for certain gross effects of long-term toxic substances in man. There are two principal obstacles to further progress in this field. The first is the lack of a clear statement of public policy concerning the issues of confidentiality and informed consent in the use of identifiable personal records for medical research. A settlement is needed which defines the proper limits of their use in the interests of health with safeguards to privacy. The second obstacle is a lack of resources to improve the quality, accessibility and organization of the appropriate data.