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The Development of a Methodology for Examining the Process of Family Communication of Genetic Test Results
Author(s) -
Smith Jonathan A.,
Dancyger Caroline,
Wallace Melissa,
Jacobs Chris,
Michie Susan
Publication year - 2011
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1007/s10897-010-9317-x
Subject(s) - genogram , genetic counseling , genetic testing , process (computing) , test (biology) , meaning (existential) , qualitative research , psychology , developmental psychology , computer science , applied psychology , social psychology , genetics , biology , sociology , psychotherapist , social science , paleontology , operating system
It is important to study communication processes in families where members are undergoing testing for genetic conditions because the information received from such testing is crucial not just to the individual concerned but also to other members of the biological family. This topic has received little research attention, in part because of the complexities of methodology required. In this paper we present the development of a method specifically designed for the examination of the content and process of communication of genetic information in families. The method aims to maximize ecological validity as far as is possible. We describe how participants and other family members are recruited and how data were collected. We outline three main data analytic strategies: a graphic to show how genetic information changes as it flows from clinic and through the family, an intensive qualitative analysis of the meaning and impact of the genetic information to different family members, and an informative genogram which plots key family dynamics. This method will be illustrated in relation to a study of ten family‐groups where one individual has been found to carry a genetic mutation predisposing them to hereditary breast and ovarian cancer.