Making the ‘genetic counsellor’ in the UK, 1980–1995

Abstract

The professional identity of the ‘genetic counsellor’ first took shape in the UK in the early 1990s, when the University of Manchester established the country’s first masters-level training course. Postwar, genetic counselling had been carried out by (male) clinical geneticists, who, alongside their research, clinical and field-building activities, met patients and families to discuss inherited conditions and risk estimates, and who sometimes advised parents whether to attempt or continue pregnancies. By contrast, the new cohort of students in Manchester in the 1990s were not medically trained, were mostly women, and were schooled in the psychological and social consequences of genetic testing and diagnosis, as well as methods for the care, support and emotional management of patients and families. This was a significant change both in the practices of ‘genetic counselling’ and who was expected to practise it. Focusing on a small section of this history, between 1980 and 1995, this paper describes some of the historical threads that contributed to this change. It charts the early work of genetic nurses and social workers, who in the 1980s carved out distinctive roles within National Health Service genetics centres. It describes the separate, specialist provision developed by sickle cell and thalassaemia counsellors, who developed new approaches in dialogue with racialised and underserved patient communities. It examines growing interest in the late 1980s and early 1990s in the tacit social and cultural conditions of genetic counselling encounters, and how this cohered with attention from disability scholars, psychologists and social scientists. By describing these historical contributions, this paper explores how the intersecting gendered, racialised and disciplinary politics of clinical genetics shaped the new professional role of the ‘genetic counsellor’.