Genetic knowledge and family relationships: two case studies

Abstract

There is an explosion of interest in the ‘new genetics’, and increasingly people are being referred to regional genetic clinics (RGC) for counselling and advice. This study of 30 families looked at the process of genetic counselling in one clinic in the North of England. Consultations were video recorded and the geneticist was interviewed after the clinic. Patients and their families were subsequently interviewed at home. Using some of the data from this qualitative study, and a case study approach, this paper looks at the way in which new genetic information may crucially affect social relationships within families. The geneticist at this clinic spent most of the consultation time looking for a diagnosis, explaining the details of genetic inheritance and considering the risks to future offspring. Psychosocial issues such as stigmatization, guilt or possible damage to social relationships were rarely discussed. Warnings are often given about the dangers of the ‘new genetics’, particularly in the areas of insurance or employment. However, unless we train sufficient genetic counsellors to deal with psychosocial issues as well as diagnosis and risk calculation, and unless the NHS provides sufficient money for the necessary clinics and support staff, the way ahead is indeed fraught with difficulty. We thank the staff and patients at the clinic concerned for their time and candour, and we are also grateful to Dr Peter Campion and Ms Margaret Ling for their comments on this paper.