A report on genetic registers. Based on the report of the Clinical Genetics Society Working Party

Abstract

A Register may be defined as a record in which regular entry is made of details of any kind sufficiently important to be exactly recorded (Shorter Oxford INPUT ERROR Dictionary). Genetic Registers range from simple card index systems of patients in whom a geneticist has a special interest, to elaborate computerized systems which may include a great deal of personal, medical and genetic information on affected individuals and their relatives. There are a number of different types of genetic Registers, but the authors' attention has been mainly directed to Registers desgined specifically for the prevention of genetic disease, since it is in this area that most concern regarding feasibility, acceptability and confidentiality has been voiced. In recent years there has been growing interest in establishing such Registers as a means of improving the ascertainment and follow-up of individuals in the population who are at risk of transmitting a serious genetic disorder to their offspring. In 1977 the Committee of the Clinical Genetics Society formed a Working Party in order specifically: to consider the nature of genetic Registers; to consider the value and potential application of such Registers, particularly with regard to the prevention of genetic disease; to consider genetic Registers with regard to: specific genetic disorders such as Huntington's chorea and genetic disorders in general where relatives may be at high risk; to consider both the feasibility and acceptability of genetic Register systems organized: on a national basis and on a more local basis; and to make recommendations. This paper represents a summary of some of the main conclusions in the Report, which was presented to the Society in July 1978.