Hallowell N, Ardern-Jones A, Eeles R, Foster C, Lucassen A, Moynihan C, Watson M
Public Health Sciences, The Medical School, University of Edinburgh, United Kingdom.
J Genet Couns. 2005 Jun;14(3):207-17. doi: 10.1007/s10897-005-0384-3.
Men who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. Male carriers may be at increased risk of breast and prostate cancers. Relatively little is known about at-risk men's decision-making about BRCA1/2 testing. This qualitative study explores the influences on male patients' genetic test decisions. Twenty-nine in-depth interviews were undertaken with both carrier and noncarrier men and immediate family members (17 male patients, 8 female partners, and 4 adult children). These explored family members' experiences of cancer and genetic testing, decision-making about testing, family support, communication of test results within the family, risk perception and risk management. Implicit influences on men's testing decisions such as familial obligations are examined. The extent to which other family members--partners and adult children--were involved in testing decisions is also described. It is demonstrated that mothers of potential mutation carriers not only perceive themselves as having a right to be involved in making this decision, but also were perceived by their male partners as having a legitimate role to play in decision-making. There was evidence that (adult) children were excluded from the decision-making, and some expressed resentment about this. The implications of these findings for the practice of genetic counseling are discussed.
有乳腺癌和/或卵巢癌家族病史的男性可能会接受预测性基因检测，以确定他们是否携带家族特有的BRCA1/2突变。男性携带者患乳腺癌和前列腺癌的风险可能会增加。对于有风险的男性关于BRCA1/2检测的决策，我们了解得相对较少。这项定性研究探讨了对男性患者基因检测决策的影响因素。对携带者和非携带者男性及其直系家庭成员（17名男性患者、8名女性伴侣和4名成年子女）进行了29次深入访谈。这些访谈探讨了家庭成员的癌症及基因检测经历、检测决策过程、家庭支持、家庭内部检测结果的沟通、风险认知和风险管理。研究还考察了诸如家庭义务等对男性检测决策的潜在影响因素。此外，还描述了其他家庭成员——伴侣和成年子女——参与检测决策的程度。结果表明，潜在突变携带者的母亲不仅认为自己有权参与这一决策，而且她们的男性伴侣也认为她们在决策过程中应发挥合理作用。有证据表明（成年）子女被排除在决策之外，一些子女对此表示不满。本文讨论了这些研究结果对遗传咨询实践的启示。
