What improves the likelihood of people receiving genetic test results communicating to their families about genetic risk?
What improves the likelihood of people receiving genetic test results communicating to their families about genetic risk?
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DOI：
10.1016/j.pec.2021.01.001
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发表时间：
2021-04
影响因子：
3.5
通讯作者：
Jarvik GP
中科院分区：
文献类型：
--
作者：
Bowen DJ;Makhnoon S;Shirts BH;Fullerton SM;Larson E;Ralston JD;Leppig K;Crosslin DR;Veenstra D;Jarvik GP
目前，我们依赖先证者在家庭内部交流基因检测结果和健康风险，以刺激预防行为，如级联检测。基于指南的级联检测的比率很低，可能是由于家庭成员之间的风险沟通频率较低或不紧急。了解正在沟通的内容及其原因可能有助于改进干预措施，从而增加沟通和级联测试的比率。189名接受阳性和阴性结直肠癌(CRC)测序结果的参与者完成了关于家庭沟通、家庭功能、癌症在家庭中的影响以及未来风险沟通的调查，并且是eMERGE3的参与者。问题取自现有调查，并使用电子邮件和网络驱动工具进行电子管理。在收到结果之前，儿童权利公约风险沟通的常见家庭成员对象是母亲和父亲，然后是姐妹和孙子，最后是孩子和兄弟。沟通影响得分为0.66(SD=0.83)，表示沟通影响为轻至中度。年龄和教育程度与家庭沟通的频率显著相关，但与家庭沟通对癌症的影响无关。从先证者到家庭成员，很少有关于癌症风险的沟通。这些结果表明，这是一个帮助家庭改善沟通的机会。
We currently rely on probands to communicate genetic testing results and health risks within a family to stimulate preventive behaviors, such as cascade testing. Rates of guidelines-based cascade testing are low, possibly due to low frequency or non-urgent communication of risk among family members. Understanding what is being communicated and why may help improve interventions that increase communication and rates of cascade testing. Participants (n=189) who were to receive both positive and negative colorectal cancer (CRC) sequencing results completed surveys on family communication, family functioning, impact of cancer in the family, and future communication of risk and were participants in eMERGE3. Questions were taken from existing surveys and administered electronically using email and a web driven tool. Common family member targets of CRC risk communication, before results were received, were mothers and fathers, then sisters and grandchildren and finally, children and brothers. A communication impact score of 0.66 (sd=0.83) indicated low-to-moderate communication impact. Age and education were significantly associated with frequency of familial communication, but not on the cancer-related impact of familial communication. There is infrequent communication about cancer risk from probands to family members. These results demonstrate an opportunity to help families improve communication.
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影响因子：
1.6
作者：
Bowen, Deborah J.;Hyams, Travis;Jarvik, Gail
通讯作者：
Jarvik, Gail
影响因子：
3.7
作者：
Bowen, Deborah J.;Burke, Wylie;Harris, Julie N.
通讯作者：
Harris, Julie N.
DOI：
10.1111/jlme.12288
发表时间：
2015
期刊：
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
影响因子：
--
作者：
Wolf SM;Branum R;Koenig BA;Petersen GM;Berry SA;Beskow LM;Daly MB;Fernandez CV;Green RC;LeRoy BS;Lindor NM;O'Rourke PP;Breitkopf CR;Rothstein MA;Van Ness B;Wilfond BS
通讯作者：
Wilfond BS
影响因子：
39.2
作者：
Ladabaum U;Wang G;Terdiman J;Blanco A;Kuppermann M;Boland CR;Ford J;Elkin E;Phillips KA
通讯作者：
Phillips KA
影响因子：
3.6
作者：
Bowen, Deborah J.;Robbins, Robert;Wooldridge, Jean
通讯作者：
Wooldridge, Jean