Development of genetic counseling in Sweden 1950-1980

The development of genetic counseling in Sweden in the field of medical genetics emerged in the 1950s, at the department of medical genetics at Uppsala University. The head of department, Jan Arvid Böök, a member of the WHO expert committee on Human Genetics, early realized the importance of studies in broadly distributed genetic diseases, along with genetic counseling. In the 1950s, at the same time as he established a modern laboratory for chromosome analysis, he also held genetic counseling sessions, both with clients referred to him from hospitals in the region, as well as to “walk-ins”. In Böök’s ways of navigating between the older traditions of eugenics and the new movement toward individual choice, there are signs of both continuity and discontinuity in relation to the Swedish eugenic project and population policy of the 1930s and 1940s. In the 1950s and 1960s, clinical genetic counseling in Sweden was provided by individual physicians and scientists with an interest in and knowledge of genetics, like Böök in Uppsala. The first outpatient clinic for genetic counseling, however, was established in 1970 at the Karolinska Hospital in Stockholm by geneticist Jan Lindsten. Lindsten had started his career as a researcher at the Department for Medical Genetics. Other students of the department were also involved in the setting up of similar clinics in various university hospitals in Sweden in the 1970s. By this time, chromosome analysis and prenatal diagnosis had developed as important tools for the health care system, which created a need for more systematized genetic counseling. In our presentation we will provide an overview over this first Swedish generation of genetic counselors, as well as a brief overview of the research that the counseling activities were based on. We will also provide a tentative analysis of norms and values that characterized the genetic counseling activities in the first generation counselors, based on a series of interviews we have performed within our research project “Better Humans or Reduced Suffering? Historical Perspectives on Medical Genetics and Genetic Counseling in Sweden, ca. 1950-1980”. Our analysis will situate genetic counseling in Sweden at the crossroad between the development of the national welfare state and broader international trends