Women's thoughts on receiving and sharing genetic information: Considerations for genetic counseling.
Women's thoughts on receiving and sharing genetic information: Considerations for genetic counseling.
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妇女对接受和共享遗传信息的想法：遗传咨询的考虑。
DOI：
10.1002/jgc4.1599
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发表时间：
2022-12
影响因子：
1.9
通讯作者：
Daly, Mary B.
中科院分区：
文献类型：
--
作者：
Pfledderer, Christopher D.;Gren, Lisa H.;Frost, Caren J.;Andrulis, Irene L.;Chung, Wendy K.;Genkinger, Jeanine;Glendon, Gord;Hopper, John L.;John, Esther M.;Southey, Melissa;Terry, Mary Beth;Daly, Mary B.
遗传性癌症综合征基因检测的适应症在学术和社区环境中都在扩大。然而，只有一小部分候选者会选择这种选择。因此，了解影响癌症患者和未患癌症的个体接受基因检测的因素非常重要。将基因组风险分层成功转化为临床护理将要求这些信息的提供者了解将考虑进行检测的个人的态度、感知的风险和益处以及担忧。本研究的目的是根据乳腺癌家族登记队列中受乳腺癌影响和未受乳腺癌影响的女性的个人特征，评估对遗传风险信息的信念、态度和偏好。这项分析的数据来自八个调查问题，询问参与者（N = 9,048，100% 女性）对遗传信息的看法。女性表示，传达测试的准确性很重要，她们对与个人风险水平相关的信息、了解可以治疗的疾病以及可能对家人有帮助的信息感兴趣。年轻女性最感兴趣的是基因检测结果如何影响她们自己的健康需求，而老年女性更感兴趣的是遗传信息如何使家庭其他成员受益。亚洲和西班牙裔女性对如何进行基因测试最感兴趣。患有乳腺癌的女性更有可能对可能传递乳腺癌基因感到悲伤，而未受影响的女性则更不确定自己未来患癌症的风险。所确定的各种信息需求对于遗传咨询师如何为考虑基因检测的个人定制沟通具有影响。
Indications for genetic testing for inherited cancer syndromes are expanding both in the academic and the community setting. However, only a fraction of individuals who are candidates for testing pursue this option. Therefore, it is important to understand those factors that impact the uptake of genetic testing in individuals affected and unaffected with cancer. A successful translation of genomic risk stratification into clinical care will require that providers of this information are aware of the attitudes, perceived risks and benefits, and concerns of individuals who will be considering testing. The purpose of this study was to assess beliefs, attitudes and preferences for genetic risk information, by personal characteristics of women affected and unaffected by breast cancer enrolled in the Breast Cancer Family Registry Cohort. Data for this analysis came from eight survey questions, which asked participants (N = 9,048, 100% female) about their opinions regarding genetic information. Women reported that conveying the accuracy of the test was important and were interested in information related to personal level of risk, finding out about diseases that could be treated, and information that could be helpful to their families. Young women were most interested in how their own health needs might be impacted by genetic test results, while older women were more interested in how genetic information would benefit other members of the family. Interest in how the genetic test was performed was highest among Asian and Hispanic women. Women affected with breast cancer were more likely to report feeling sad about possibly passing down a breast cancer gene, while unaffected women were more uncertain about their future risk of cancer. The variety of informational needs identified has implications for how genetic counselors can tailor communication to individuals considering genetic testing.
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作者：
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