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Disclosing cancer genetic information within families: perspectives of counselees and their at-risk relatives
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Genetics and Pathology.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
2010 (English)In: Familial Cancer, ISSN 1389-9600, E-ISSN 1573-7292, Vol. 9, no 4, 669-679 p.Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2010. Vol. 9, no 4, 669-679 p.
Keyword [en]
At-risk relatives, Disclosing genetic information, Genetic counseling, Hereditary cancer
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-138840DOI: 10.1007/s10689-010-9364-3ISI: 000284157200029PubMedID: 20577820OAI: oai:DiVA.org:uu-138840DiVA: diva2:380065
Available from: 2010-12-20 Created: 2010-12-20 Last updated: 2011-02-01Bibliographically approved

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Nordin, Karin

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