Evidence map›Paper›PMID 42856595›Full record

ArticlemedRxiv : the preprint server for health sciences2026

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

Anna C F Lewis, Ingrid A Holm, Adam H Buchanan, Aaron J Goldenberg, Bartha M Knoppers, Amy L McGuire, Robert C Green

Abstract readPreprint
In one paragraph

Article in medRxiv : the preprint server for health sciences, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Anna C F LewisHarvard Medical School, Boston, MA, USA.ORCID 0000-0002-1274-386X
Ingrid A HolmDepartment of Genetics, Boston Children's Hospital, Boston, MA, USA.
Adam H BuchananDepartment of Genomic Health, Geisinger, Danville, PA, USA.
Aaron J GoldenbergCase Western Reserve University, School of Medicine, Cleveland, OH, USA.
Bartha M KnoppersCentre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
Amy L McGuireBaylor College of Medicine, Center for Medical Ethics and Health Policy, Houston, TX, USA.
Robert C GreenHarvard Medical School, Boston, MA, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

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.

Indexed as

data governancegenomic newborn screeninghealth equitylifelong genomic medicine

Identifiers

PMID42856595
PMCPMC13648683

What Socratic holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.