Brennenstuhl Heiko, Schaaf Christian P
Institut für Humangenetik, Universität Heidelberg, Heidelberg, Baden-Württemberg, Deutschland.
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2023 Nov;66(11):1232-1242. doi: 10.1007/s00103-023-03777-2. Epub 2023 Oct 13.
The application of high-throughput sequencing methods for population-based genomic newborn screening offers numerous opportunities for improving population health. The use of genome-based sequencing technology holds potential to enable the diagnosis of virtually any genetic disorder at an early stage and offers great flexibility when it comes to selection and expansion of target diseases. National and international efforts are therefore being made to investigate the ethical, legal, social, psychological, and technical aspects of genomic newborn screening. In addition to the many opportunities, there are numerous challenges and questions that remain to be answered: When and how should legal guardians be informed about such screening? Which diseases should be screened for? How should incidental findings or identification of a genetic predisposition be dealt with? Should data be stored long term and if so, how can this be done securely? Provided there is an appropriate regulatory framework and a transparent consent process, genomic newborn screening has the potential to fundamentally change the way in which we screen for congenital diseases. However, there is still much to be done. To achieve understanding and acceptance of genomic newborn screening amongst all stakeholders and thus to maximize its benefits for the population, a public discourse on the possibilities and limitations of genomic newborn screening is of critical importance. This article aims to provide an overview of the innovative technical developments in the field of human genetics, describe national and international approaches, and discuss challenges and opportunities of genomic newborn screening development.
将基于人群的基因组新生儿筛查的高通量测序方法应用于实践,为改善人群健康提供了众多机会。基于基因组的测序技术有可能在早期诊断几乎任何遗传疾病,并且在目标疾病的选择和扩展方面具有很大的灵活性。因此,国家和国际层面都在努力研究基因组新生儿筛查在伦理、法律、社会、心理和技术方面的问题。除了众多机会之外,还有许多挑战和问题有待解答:应该在何时以及如何告知法定监护人有关此类筛查的信息?应该筛查哪些疾病?偶然发现或遗传易感性的鉴定应如何处理?数据是否应该长期存储,如果是,如何安全地存储?如果有适当的监管框架和透明的同意程序,基因组新生儿筛查有可能从根本上改变我们筛查先天性疾病的方式。然而,仍有许多工作要做。为了在所有利益相关者中实现对基因组新生儿筛查的理解和接受,从而最大限度地提高其对人群的益处,就基因组新生儿筛查的可能性和局限性展开公开讨论至关重要。本文旨在概述人类遗传学领域的创新技术发展,描述国家和国际层面的方法,并讨论基因组新生儿筛查发展面临的挑战和机遇。