J Med Ethics. 2025 May 11:jme-2025-110846. doi: 10.1136/jme-2025-110846. Online ahead of print.
ABSTRACT
Genomic biobanks play a pivotal role in advancing healthcare research, particularly through large-scale initiatives such as the Newborn Genomes Programme (NGP). This report examines the ethical challenges associated with paediatric genomic biobanks, using the NGP as a case study. Central to these challenges is genomic data ownership and how it informs consent models to balance individual autonomy and the collective good. Ethical considerations in paediatric biobanking often involve tensions between respecting individual rights and informed consent and prioritising the societal benefits of genomic research through public health advancements and medical breakthroughs. While traditional bioethical frameworks prioritise either individual autonomy or societal benefit, communitarian ethics offers a more integrative approach, recognising that individual and collective interests are deeply interconnected. This is particularly relevant in paediatric biobanking where families and communities share a stake in genetic information. Guided by communitarian ethics, the NGP navigates these complexities through governance mechanisms, including a stewardship model, dynamic consent processes and an ethics working group. By moving beyond the strictly individualistic focus of traditional ethical frameworks, it fosters trust, transparency and a commitment to respecting donor autonomy to ensure ethical adaptability in response to the evolving landscape of genomic medicine. As genomic biobanks continue to expand globally, the UK’s NGP serves as a valuable model for maintaining ethical integrity in paediatric research while still advancing public health objectives and evolving in response to emerging ethical challenges.
PMID:40350254 | DOI:10.1136/jme-2025-110846
