Siermann Maria, Mohan Riya, Bunnik Eline M, Cambon-Thomsen Anne, Chadwick Ruth, Cornel Martina C, van Delden Johannes J M, Joly Yann, Molnár-Gábor Fruzsina, Nicolás Jiménez Maria Pilar, Pinxten Wim, Rial-Sebbag Emmanuelle, Shabani Mahsa, Van Steijvoort Eva, Wallace Susan E, Zawati Ma'n H, Knoppers Bartha Maria, Borry Pascal
Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
Department of Health, Ethics, and Society, GROW Research Institute for Oncology and Reproduction, Maastricht University, Maastricht, Netherlands.
Front Genet. 2025 Apr 25;16:1566291. doi: 10.3389/fgene.2025.1566291. eCollection 2025.
Recent advances in human genomics have transformed the field, leading to increased integration of genomics into mainstream clinical care, broadening the potential of personalized medicine, and expanding data generation and sharing. From the outset, genetics and genomics have given rise to a broad array of ethical concerns, including issues related to discrimination and stigmatization, informed consent, and reporting requirements of secondary findings. Ethics considerations and trends have evolved in parallel with the rapid technological progress in genomics. Like other transformative technologies, genomic innovations are governed by a combination of laws and ethics guidelines to ensure their responsible implementation. In this manuscript, we propose three key values that are crucial and timely to address now: equity, collective responsibility in the mainstreaming of genomics, and, sustainability. Equity warrants renewed attention due to its critical role in ensuring fair access to genomic innovations and promoting equality within society at large. Collective responsibility in the mainstreaming of genomics is equally important, especially as genomics becomes more broadly available in healthcare and to the broader public, thereby emphasizing shared accountability in its ethical application. Finally, in a context of scarcity of financial, personnel and environmental resources, sustainability needs to be considered to ensure the future of responsible governance in research and healthcare. The goal is to ensure equal access to genomic innovations, promote the ethically responsible use of genomic technologies, and support the long-term sustainability of the field.
人类基因组学的最新进展变革了该领域，使得基因组学在主流临床医疗中的整合度提高，拓展了个性化医疗的潜力，并增加了数据的生成与共享。从一开始，遗传学和基因组学就引发了一系列广泛的伦理问题，包括与歧视、污名化、知情同意以及次要发现的报告要求相关的问题。伦理考量和趋势随着基因组学技术的迅速发展而同步演变。与其他变革性技术一样，基因组创新受法律和伦理准则的共同约束，以确保其得到负责任的应用。在本论文中，我们提出了当下亟需关注的三个关键价值观：公平、基因组学主流化中的集体责任以及可持续性。公平因其在确保公平获取基因组创新以及促进整个社会平等方面的关键作用而值得重新关注。基因组学主流化中的集体责任同样重要，特别是随着基因组学在医疗保健领域以及更广泛公众中得到更广泛应用，这凸显了在其伦理应用中的共同责任。最后，在资金、人员和环境资源稀缺的背景下，需要考虑可持续性，以确保研究和医疗保健领域负责任治理的未来。目标是确保公平获取基因组创新，促进基因组技术的伦理责任使用，并支持该领域的长期可持续性。
