Despite major advancements in genomic medicine, research to optimize the design and communication of genetically informed interventions in behavioral health has lagged. The goal of this study was to engage potential end users in participatory codesign of a personalized genetically informed risk tool to intervene on high-risk health behaviors. We used structured interviews to examine end-user attitudes and interest in personalized genetics, qualitative interviews to guide iterative design of a genetically informed tool, and questionnaires to assess acceptability and potential utility of the tool. Participants expressed strong demand for using personal genetics to inform smoking and alcohol-related disease risk and guide treatment (78%–95% agreed). Via iterative design feedback, we cocreated a genetically informed risk profile featuring (i) explanation of genetic and phenotypic markers used to construct a risk algorithm, (ii) personalized risks and benefits of healthy behavior change, and (iii) recommended actions with referral to freely available resources. Participants demonstrated sufficient understanding and cited motivating behavior change as the most useful purpose of the tool. In three phases, we confirmed strong desire for personalized genetics on high-risk health behaviors; codesigned a genetically informed profile with potential end users; and found high acceptability, comprehensibility, and perceived usefulness of the profile. As scientific discovery of genomic medicine advances in behavioral health, we must develop the tools to communicate these discoveries to consumers who stand to benefit. The potential of genomic medicine to engage populations and personalize behavioral health treatment depends, in part, on preparatory studies to design for the future implementation of genetically informed interventions.

中文翻译：

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促进行为健康的个性化遗传风险工具的参与式设计

尽管基因组医学取得了重大进展，但优化行为健康遗传干预措施的设计和交流的研究仍然滞后。这项研究的目的是让潜在的最终用户参与个性化遗传信息风险工具的参与式联合设计，以干预高风险健康行为。我们使用结构化访谈来检查最终用户对个性化遗传学的态度和兴趣，使用定性访谈来指导遗传信息工具的迭代设计，并使用问卷来评估该工具的可接受性和潜在效用。参与者表达了使用个人遗传学来告知吸烟和酒精相关疾病风险并指导治疗的强烈需求（78%–95% 同意）。通过迭代设计反馈，我们共同创建了一个基于遗传的风险概况，其中包括（i）用于构建风险算法的遗传和表型标记的解释，（ii）健康行为改变的个性化风险和益处，以及（iii）建议采取的行动免费提供的资源。参与者表现出足够的理解，并将激励行为改变视为该工具最有用的目的。分三个阶段，我们证实了对高危健康行为进行个性化遗传学的强烈愿望；与潜在的最终用户共同设计了遗传信息档案；并发现该配置文件具有较高的可接受性、可理解性和感知实用性。随着基因组医学的科学发现在行为健康方面取得进展，我们必须开发工具将这些发现传达给受益的消费者。基因组医学吸引人群和个性化行为健康治疗的潜力部分取决于为未来实施遗传干预措施而设计的准备性研究。