Communication of genetic information in families: A randomised trial of a genetic counselling intervention.

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Advances in genetics research, including the Human Genome Project, have led to the availability of an increasing number of genetic tests that can give people information about their risk of developing specific genetic conditions. Genetic information given to an individual when diagnosed with a genetic condition is likely to have important health implications for their family members as well as themselves. However, the task of talking to family members about genetic information and what it means for family members can be difficult. Research has shown that commonly genetic information does not get passed on to all relevant family members and that this process is influenced by factors such as family dynamics and the complexity of the information. Despite this, current practice in genetic counselling, in keeping with Privacy laws, is for health care providers to discuss with patients attending genetic testing services the implications of their genetic information for their relatives, and the importance of the patient relaying that information to family members who have been identified as potentially at risk. Letters or information sheets for family members may be offered to the patient if they believe it would be helpful. There is much discussion about ways to improve communication of genetic information in families but very little evidence to guide practice. This study aims to evaluate a specific genetic counselling intervention to aid communication, using a robust randomised study design. Participants will be recruited from genetics clinics at several sites. Individuals who are presenting for the first time at a genetics clinic for the diagnosis of a genetic condition in themselves or their children, that has implications for family members, will be eligible to participate. They will also need to have at least one living relative who could benefit from being told the genetic information. Once participants are recruited into the study they will be randomly assigned to one of two groups. The control group will receive usual care which involves the current practice of discussing the implications of the genetic information for family members, identifying relatives who might be at risk and offering a letter for the individual to give to family members, if that would be helpful. The intervention group will receive an enhanced genetic counselling intervention where a research genetic counsellor will contact the person by phone at 3, 6 and 9 month intervals. The intervention comprises 15-20 minute telephone genetic counselling addressing family communication of genetic information. The effectiveness of the intervention will be assessed 18 months after enrolment into the study. Participants from both groups will be asked to complete a survey and the number of at-risk relatives who have attended a genetics service and/or had a genetic test will be ascertained from genetic health records. This is the first ever scientifically robust study to test an intervention to aid family communication of genetic information. It will provide evidence to guide genetic counselling practice in this important area of family communication.

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