Genetic Nurses and Counsellors—Preparation for Practice with Families at Risk of Familial Cancer

Genetic counselling for familial cancer has evolved as a medical speciality relatively recently. Whilst services for families at risk of inherited cancers may be similar to those offered to other families at risk of serious adult-onset conditions, the resource implications are larger due to the number of families potentially affected. Genetic counsellors can make a considerable contribution to the provision of genetic services for these families. In a longitudinal study of 43 families referred for genetic counselling for a variety of conditions (including cancer), the needs and expectations of clients were explored. Prior to contact with the staff of the genetics service, the majority of families had no knowledge of the genetics service, or of the process referred to as genetic counselling. They therefore had no idea of the type of service which could be offered to them and they were inadequately prepared by the person who referred them. One factor which emerged strongly as an important influence in motivating clients to request genetic information was the client’s need for certainty. The need for certainty is considered a personal trait which may vary enormously between individuals [8]. Clients in this study who were asking for information felt that any news, either “good” or “bad” was preferable to living with uncertainty [4]. This finding is of relevance to clients at risk of familial cancer. Even those who have a positive gene test will usually be left with some uncertainty due to factors such as variable penetrance. A second important finding was evidence that individuals construct their own explanation about the inheritance of the condition, based on both the family history and information from other sources such as friends, the media and other health professionals. Whilst prior “scientific” knowledge of genetic inheritance was scant in most families, the “lay” knowledge was strongly held. In order for the genetic information to be assimilated into the individual’s construct of the genetic condition, the scientific explanation must be seen to be consistent with the family story, or it may be rejected by the client as suspect. The results of the study indicate clients want information which will give them more certainty about their situation, and that scientific information given during the process of genetic counselling needs to be presented in a way that enables the client to assimilate it into their previous beliefs, by relating it to their own family history. In the United Kingdom, genetic services are provided by a multi-disciplinary team which includes medical geneticists and non-medical genetic counsellors, based at Regional Genetics Centres. The majority of genetic counsellors have nursing background. Frequently, the genetic counsellor will initially visit the family at home to take the family history and discuss the main concerns. Further consultations with either the counsellor, and/or the medical staff may then occur, according to the needs of the family. Data collected in a UK study on the role of the genetic Short Communication