Communicating genetic information to family members- what families have to say?
Genetic information has familial implications. Genetic health professionals may use directive counselling to encourage individuals to communicate, however, the responsibility of informing family members about the genetic information lies largely at the discretion of the individual. This process may be complex and may not be the best way to facilitate family communication of genetic information.
The authors are investigating families’ experiences of communicating genetic information, the effectiveness of the communication process, and what the role of the genetic health professional is within this experience. Three stages of the project are planned which include; 1) interviews with probands, 2) interviews with the proband’s family members and 3) a survey of health professional’s current practise. Some qualitative data has been collected through interviews with probands and their family members, as has quantitative data from the health professional’s survey.
This paper describes results to date of this research and illustrates not only how communication of genetic information is occurring in families, but also family member’s understanding of the information. The results from the survey, together with the interviewee’s perceptions, also provide an insight into the role of genetic health professionals within this experience.