Biomedical Ethics Research Program, Mayo Clinic, Rochester, Minnesota, USA.
Department of Health Sciences Research, Mayo Clinic, Rochester, Minnesota, USA.
J Health Commun. 2021 Aug 3;26(8):545-552. doi: 10.1080/10810730.2021.1968078. Epub 2021 Sep 2.
We describe factors influencing patient decisions to share positive cancer genetic test results with family members. We focused on patients who were diagnosed with several different cancer types but did not have a family history that was suggestive of an inherited risk. Participants were recruited from Mayo Clinic and had been recently diagnosed with cancer. An 80+ gene panel was performed. Before receiving genetic test results, patients completed a 49-item survey on their intent to share their results with relatives. 1,721 (57.7%) of 2,984 individuals who elected to pursue genetic testing completed the survey. Most patients planned to share cancer-related genetic results with a spouse or partner (97.0%), at least one adult child (92.2%), at least one sibling (86.2%), and with at least one parent (70.3%). Familial support scores and familial communication scores were predictive of intent to share cancer-related genetic test results. Our data highlight differences in family communication capacity and support that are important for clinicians to consider when supporting patients who wish to share cancer-related genetic test results with family members. Our data point to several potential interventional strategies that might increase the likelihood of cancer-related genetic test results being shared with family members at risk.
我们描述了影响患者决定与家庭成员分享阳性癌症遗传检测结果的因素。我们关注的是被诊断出患有多种不同癌症类型但家族史无明显遗传风险的患者。参与者是从梅奥诊所招募的，最近被诊断出患有癌症。进行了 80 多个基因检测。在收到基因检测结果之前，患者完成了一份 49 项的调查问卷，内容是他们与亲属分享结果的意愿。在 2984 名选择进行基因检测的人中，有 1721 人（57.7%）完成了调查。大多数患者计划与配偶或伴侣（97.0%）、至少一名成年子女（92.2%）、至少一名兄弟姐妹（86.2%）以及至少一名父母（70.3%）分享癌症相关的遗传结果。家族支持评分和家族沟通评分可预测分享癌症相关遗传检测结果的意愿。我们的数据突出了家族沟通能力和支持方面的差异，临床医生在支持希望与有风险的家庭成员分享癌症相关遗传检测结果的患者时，这些差异非常重要。我们的数据指出了几种潜在的干预策略，这些策略可能会增加与有风险的家庭成员分享癌症相关遗传检测结果的可能性。
