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The development of a methodology for examining the process of family communication of genetic test results

Smith, Jonathan A. and Dancyger, Caroline and Wallace, M. and Jacobs, C. and Michie, S. (2011) The development of a methodology for examining the process of family communication of genetic test results. Journal of Genetic Counseling 20 (1), pp. 23-34. ISSN 1059-7700.

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Official URL: http://dx.doi.org/10.1007/s10897-010-9317-x

Abstract

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.

Item Type: Article
Keyword(s) / Subject(s): Family communication, genetic test results, methodology, qualitative research, genetic counseling
School or Research Centre: Birkbeck Schools and Research Centres > School of Science > Psychological Sciences
Depositing User: Administrator
Date Deposited: 20 May 2011 11:10
Last Modified: 17 Apr 2013 12:20
URI: http://eprints.bbk.ac.uk/id/eprint/3355

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