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Familial Cancer
Published in: Familial Cancer 4/2010

01-12-2010

Disclosing cancer genetic information within families: perspectives of counselees and their at-risk relatives

Authors: Afsaneh Hayat Roshanai, Claudia Lampic, Richard Rosenquist, Karin Nordin

Published in: Familial Cancer | Issue 4/2010

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Abstract

Purpose

The aim of the present descriptive study was to investigate the experience of sharing genetic information among cancer genetic counselees and their at-risk relatives.

Methods

In total, 147 cancer genetic counselees and 81 of their at-risk relatives answered to a study specific questionnaire and/or were interviewed. Counselees’ communication of genetic information to at-risk relatives was assessed with regard to who they informed, how they felt, and how they perceived their relatives’ reactions. In addition, at-risk relatives’ experiences of receiving genetic information were studied.

Results

Most of the counselees had shared the genetic information received at the counseling session personally with their at-risk relatives. The majority of the counselees (68%) reported positive or neutral feelings about sharing the genetic information with their relatives while 9% stated negative feelings. Counselees mostly interpreted the relatives’ reactions to the information as positive or neutral (62% of responses), and in few cases as negative (14% of responses). About half of relatives reported positive or neutral reactions (54%) to the received information, while about one-fifth reported negative reactions (22%). Nevertheless, most relatives were satisfied with the received information and half of the relatives intended to seek genetic counseling themselves.

Conclusion

Sharing genetic information to at-risk relatives appears to be accomplished without any major difficulties or negative feelings. However, more assistance may be needed to optimize the communication of the genetic information within at-risk families.
Appendix
Available only for authorised users
Footnotes
1
From now on referred to as relatives in the intervention or relatives in the control group.
 
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Metadata
Title
Disclosing cancer genetic information within families: perspectives of counselees and their at-risk relatives
Authors
Afsaneh Hayat Roshanai
Claudia Lampic
Richard Rosenquist
Karin Nordin
Publication date
01-12-2010
Publisher
Springer Netherlands
Published in
Familial Cancer / Issue 4/2010
Print ISSN: 1389-9600
Electronic ISSN: 1573-7292
DOI
https://doi.org/10.1007/s10689-010-9364-3

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