The potential for using widespread genetic testing to inform health care has become a viable option, particularly for heritable cancers. Yet, little is known about how to effectively communicate the benefits and risks of both personal genetic testing and participation in biorepositories that aid scientific advancements. Nationwide efforts are engaging communities in large genetic studies to better estimate the population‐wide prevalence of heritable cancers but have been met with hesitance or declination to participate in some communities. To successfully engage an Oregon population in longitudinal research that includes predictive genetic testing for pathogenic or likely pathogenic variants associated with an increased risk for cancer, researchers conducted 35 focus groups (two of which were held in Spanish) in 24 of Oregon's 36 counties to better understand knowledge and attitudes related to genetic testing and willingness to participate in longitudinal genetic research. A total of 203 adults (mean = 45.6 years; range 18–88), representing a range of education levels and prior knowledge of genetic research, participated in the focus groups. The majority (85%) of participants reported personal or family diagnoses of cancer (e.g., self, family, friends). A majority (87%) also reported a strong interest in cancer genetic testing and receiving genetic information about themselves. Nearly all focus groups (94%, 33 of 35 sites) included participant discussion citing their families (e.g., children, close relatives, and extended family members) as key motivators for participation in genetic research. For example, participants reported interest in increasing personal knowledge about their own and their families’ cancer risks in order to respond proactively, if a pathogenic variant was found. While most focus groups (94%, 33 of 35 sites) included participant discussion describing barriers to predictive genetic, testing such as concerns about outcomes, the desire to learn about health risks in oneself mitigated or outweighed those fears for many participants. Other commonly reported concerns were related to potential mistrust of insurance companies, researchers, or institutions, or lack of knowledge about genetics, genetic testing, or genetic research. Participants, particularly in rural areas, highlighted critical factors for research recruitment, such as trust, personal interaction, public education about genetic research, and clear communication about study goals and processes. Our statewide findings reflect that public interest in predictive cancer genetic testing and cancer genetic research can surpass lack of knowledge of the complex topics, particularly when benefits for self and family are emphasized and when study considerations are well articulated.

中文翻译：

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公众对俄勒冈州的预测性癌症基因测试和研究的认识。

利用广泛的基因检测来提供医疗保健的潜力已成为可行的选择，尤其是对于遗传性癌症。然而，对于如何有效地传达个人基因检测和参与有助于科学进步的生物储存库的收益和风险知之甚少。全国范围内的努力正在使社区参与大型基因研究，以更好地估计全族遗传性癌症的患病率，但是在参加某些社区时遇到了犹豫或拒绝。为了成功地使俄勒冈州人口参与纵向研究，包括对与癌症风险增加相关的致病或可能致病变体进行预测性基因测试，研究人员在俄勒冈州的24个地区进行了35个焦点小组（其中两个在西班牙举行）共有36个县，以更好地了解与基因检测有关的知识和态度，以及愿意参与纵向基因研究的意愿。共有203名成年人（平均年龄45.6岁；年龄范围18-88）代表了不同的教育水平和遗传研究的先验知识，他们参加了焦点小组讨论。大多数（85％）的参与者报告了个人或家庭对癌症的诊断（例如，自己，家人，朋友）。绝大多数（87％）的人也对癌症基因检测和接收有关自身的遗传信息表现出浓厚的兴趣。几乎所有焦点小组（35个站点中的33个站点中的94％）都以参与者讨论为由，将其家庭（例如，儿童，近亲和大家庭成员）作为参与基因研究的主要动机。例如，参与者表示有兴趣增加有关自己和家人癌症风险的个人知识，以便在发现病原体的情况下主动做出反应。虽然大多数焦点小组（占35个站点中的33个站点中的94％）都进行了参与者讨论，这些讨论描述了预测遗传学的障碍，测试（例如对结果的担忧），了解自身健康风险的愿望减轻了或消除了许多参与者的恐惧。其他普遍报告的担忧与保险公司，研究人员或机构的潜在不信任，或缺乏对遗传学，基因检测或基因研究的知识有关。与会人员，特别是农村地区的与会者，强调了研究招募的关键因素，例如信任，个人互动，有关遗传研究的公众教育，并就学习目标和过程进行清晰的沟通。我们在全州范围内的发现反映出，公众对预测性癌症基因测试和癌症基因研究的兴趣可能超过了对复杂主题的了解，尤其是当强调个人和家庭的利益以及明确考虑了研究考虑因素时。