Sequencing for a Lifetime: Professional Perspectives on the Value and Feasibility of Lifelong Genomic Medicine.

INTRODUCTION: Lifelong genomic medicine, in which stored genomic data informs a lifetime of care, is moving from vision toward reality, with dozens of newborn sequencing projects underway worldwide and reanalysis of data already in clinical practice. Professional perspectives on its value and feasibility have not been examined.

METHODS: We conducted and thematically analyzed semi-structured interviews with 52 US-based professionals, including clinical geneticists, genetic counselors, primary care clinicians, laboratory personnel, and genomic screening implementers. Interviews explored delivery setting, longitudinal clinical relationships, data reanalysis and recontact, consent, data stewardship, privacy, and the pediatric-to-adult transition. Analysis combined deductive domains with inductive coding, with attention to similarities and differences across stakeholder groups.

RESULTS: Participants in all five groups saw clinical value in lifelong genomic medicine, citing the relevance of genomic information at multiple life stages, the ability to requery the genome as circumstances change, and the capacity to act on evolving knowledge. A minority contested this value, favoring more targeted testing. Many participants viewed the model as inevitable and described operational precedent for many component activities, from reanalysis of decade-old data and reclassification pipelines to "sequence once, query often" workflows and EHR-integrated alerts. Participants described substantial gaps in governance, spanning delivery setting, consent, data stewardship, recontact, and the pediatric-to-adult transition, alongside continuing operational challenges such as interoperability. No delivery setting was clearly favored: participants saw newborn screening as offering the strongest equity case but as conflicting with the explicit consent it would require, health-system delivery as excluding those without access, and commercial models as potentially short-lived. Participants raised equity concerns at enrollment, in maintaining follow-up, and at the pediatric-to-adult handoff, which we argue are cumulative and mutually reinforcing for those least connected to health systems.

CONCLUSION: Many participants expected lifelong genomic medicine to be implemented, but no comprehensive or clearly favored model for delivering it responsibly emerged. Coordinated investment in governance is needed, alongside evidence on which forms of lifelong genomic medicine offer enough clinical value to justify their costs.