Disclosing cancer genetic information within families: perspectives of counselees and their at-risk relatives
2010 (English)In: Familial Cancer, ISSN 1389-9600, E-ISSN 1573-7292, Vol. 9, no 4, 669-679 p.Article in journal (Refereed) Published
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.
At-risk relatives, Disclosing genetic information, Genetic counseling, Hereditary cancer
Medical and Health Sciences
IdentifiersURN: urn:nbn:se:uu:diva-138840DOI: 10.1007/s10689-010-9364-3ISI: 000284157200029PubMedID: 20577820OAI: oai:DiVA.org:uu-138840DiVA: diva2:380065