Guilt, blame and responsibility: men's understanding of their role in the transmission of BRCA1/2 mutations within their family

Guilt, blame and responsibility: men's understanding of their role in the transmission of BRCA1/2 mutations within their family
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DOI:
10.1111/j.1467-9566.2006.00515.x
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发表时间:
2006-11-01
影响因子:
2.9
通讯作者:
Watson, Maggie
Watson, Maggie
中科院分区:
医学2区
文献类型:
--
作者:
Hallowell, Nina;Arden-Jones, Audrey;Watson, Maggie

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有乳腺癌和/或卵巢癌家族史的男性和女性可以进行预测性基因检测,以确定他们是否携带家族特异性BRCA1/2突变。突变携带者的儿子和女儿有50%的机会遗传突变,这将增加他们患癌症的风险。对于高危男性在家族中BRCA1/2突变的传播中所扮演的角色,他们的感受知之甚少。本研究调查了高危男性对BRCA1/2预测性基因检测的反应。对携带者(n = 5)和非携带者(n = 12)进行了17次深度访谈。所有男性都认为基因检测是一项家庭责任。据观察,携带者和非携带者对其在风险病因学中的作用有不同的解释。值得注意的是,人们参与了一种叙事重建的形式,他们利用内疚和责备或命运和宿命的话语,努力将自己呈现为道德上负责任或无可指责的。作者认为,叙事重建使这些人能够调和他们的遗传身份、自我和家庭。
Men and women 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. The sons and daughters of mutation carriers have a 50 per cent chance of inheriting a mutation, which will increase their risk of developing cancer. Little is known about at-risk men's feelings about the part they play in the transmission of BRCA1/2 mutations within their families. This study investigated high risk men's responses to BRCA1/2 predictive genetic testing. Seventeen in-depth interviews were undertaken with carrier (n = 5) and non-carrier men (n = 12). All men described genetic testing as a familial duty. It is observed that carriers and non-carriers mobilised differing explanations about their role in the aetiology of risk. It is noted that men engage in a form of narrative reconstruction in which they draw upon discourses of guilt and blame or fate and predestiny in an effort to present themselves as morally responsible or blameless. It is argued that narrative reconstruction enables these men to reconcile their genetic identity, self and family.