Department of Human Genetics, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, Netherlands.
Amsterdam Public Health Research Institute, Amsterdam, Netherlands.
Front Public Health. 2024 Sep 12;12:1456853. doi: 10.3389/fpubh.2024.1456853. eCollection 2024.
INTRODUCTION: Personalised prevention using genomic information requires active involvement from patients and the public, who should be well-informed and empowered to make healthcare decisions that reflect their personal values. We aimed to map engagement practises, and assess the extent and types of engagement methods used in the field of personalised prevention of common chronic conditions using genomic information. METHODS: A scoping review on selected literature (in Medline, Embase, Scopus, Web of Science, APA PsycINFO, and IBSS) from 2015 to 2023 was performed. Articles included described practises of patient and public engagement in personalised prevention and genomics conducted in Europe focusing on cancer, cardiovascular diseases and neurodegenerative disorders. Engagement was explored based on grouping practises across the domains of care, research, education, and governance. RESULTS: A total of 23 articles describing 23 engagement practises were selected. Analysis revealed diverse engagement levels, the majority falling into the low to medium engagement category, and showing mainly unidirectional methods of engagement, especially consultation. Most engagement activities related to cancer, and none to neurodegenerative disorders. Most publications appeared in the care domain, followed by the research domain, a combination of research and care, and a combination of governance and education. CONCLUSION: These results suggest that most practises to engage patients and public in personalised prevention using genomic information appear to have lower levels of engagement. Elaborating on and implementing practises that engage and empower patients and the public at all levels of the engagement spectrum and for all chronic diseases is needed, fostering a more inclusive and participatory approach to personalised prevention.
简介:利用基因组信息进行个性化预防需要患者和公众的积极参与,他们应该充分了解情况并有权做出反映个人价值观的医疗保健决策。我们旨在绘制参与实践图,并评估在使用基因组信息预防常见慢性疾病的个性化预防领域中使用的参与方法的程度和类型。
方法:对 2015 年至 2023 年在 Medline、Embase、Scopus、Web of Science、APA PsycINFO 和 IBSS 中选择的文献进行了范围审查。选择的文章描述了在欧洲进行的以癌症、心血管疾病和神经退行性疾病为重点的个性化预防和基因组学中患者和公众参与的实践。根据护理、研究、教育和治理领域的分组实践探索了参与。
结果:共选择了 23 篇描述 23 种参与实践的文章。分析显示参与程度不同,大多数属于中低水平,且主要采用单向参与方法,尤其是咨询。大多数参与活动与癌症有关,与神经退行性疾病无关。大多数出版物出现在护理领域,其次是研究领域,研究和护理的组合,以及治理和教育的组合。
结论:这些结果表明,利用基因组信息使患者和公众参与个性化预防的大多数实践似乎具有较低的参与度。需要详细说明和实施在参与频谱的所有级别以及所有慢性疾病中使患者和公众参与并赋予其权力的实践,以促进更具包容性和参与性的个性化预防方法。
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