Department of Public Health and Caring Sciences, Uppsala University, BMC, Box 564, 751 22 Uppsala, Sweden.
Fam Cancer. 2010 Dec;9(4):669-79. doi: 10.1007/s10689-010-9364-3.
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.
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.
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.
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.
本描述性研究旨在调查癌症遗传咨询师及其高危亲属分享遗传信息的体验。
共有 147 名癌症遗传咨询师和 81 名高危亲属回答了专门的研究问卷和/或接受了访谈。咨询师将遗传信息告知高危亲属的情况，包括告知了谁、他们的感受如何，以及他们如何看待亲属的反应。此外，还研究了高危亲属接收遗传信息的体验。
大多数咨询师亲自将咨询会上收到的遗传信息与高危亲属分享。大多数咨询师（68%）报告说，与亲属分享遗传信息的感觉是积极或中性的，而 9%的人则表示感觉消极。咨询师大多将亲属对信息的反应解释为积极或中性（62%的回应），少数情况下解释为消极（14%的回应）。约一半的亲属报告说对收到的信息有积极或中性的反应（54%），而约五分之一的亲属报告说有消极的反应（22%）。然而，大多数亲属对收到的信息感到满意，一半的亲属打算自己寻求遗传咨询。
将遗传信息告知高危亲属似乎没有遇到任何重大困难或负面感受。然而，可能需要更多的帮助来优化高危家庭中遗传信息的沟通。
