ETHICAL ISSUES INVOLVED IN ESTABLISHING A REGISTRY FOR FAMILIAL ALZHEIMERS-DISEASE

In January 1992, the IMAGE Project extended the establishment of its r egistry of familial Alzheimer cases to all areas of the province of Qu ebec, for collection of epidemiological and clinical data, as well as biological samples. The aim is to study genetic transmission patterns of Alzheimer's disease (AD) and to provide a sampling framework for fu rther etiologic and risk factor studies. The IMAGE registry already in cludes data of a population-based study in the Saguenay-Lac-St-Jean ar ea; the project to collect data on familial AD (FAD) cases across the province of Quebec is known as the ALGENE Initiative. The registry is thus a collection of ''AD families'' for both familial and sporadic ca ses. The establishment of the registry involves several steps in the f ield work: recruitment and selection of families; collection of inform ation on family medical history; selection of informative families and genetic testing for AD/FAD by linkage analysis. As AD is not homogene ous in its etiology and since we do not know if, in the event that gen etics is involved in AD whether or not penetrance of the gene(s) is hi gh, we must be aware of the ''genetic horizons'' of AD in collecting a nd conserving data on families of cases, and in the genetic testing fo r AD/FAD by linkage analysis. Families who choose genetic testing must be aware of the implications of our undertaking, assured of the confi dentiality of the test and, at the same time, they must understand its limitations. The experimental nature of our research project raises e thical dilemmas. This article examines these initial considerations of the field work involved in developing a registry pertaining to geneti c testing for AD/FAD by linkage analysis and offers some preliminary o bservations on the experience of the first year of this project.