Evidence map›Paper›PMID 34200580›Full record

ReviewJournal of personalized medicine2021

Towards a Responsible Transition to Learning Healthcare Systems in Precision Medicine: Ethical Points to Consider.

Roel H P Wouters, Rieke van der Graaf, Tessel Rigter, Eline M Bunnik, M Corrette Ploem, Guido M W R de Wert, Wybo J Dondorp, Martina C Cornel, Annelien L Bredenoord

Open access · goldAbstract readReview
In one paragraph

Review in Journal of personalized medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed
2.1field-weighted citation impact, top 9% of its field
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

8 citing papers in PubMed, 10 citations in OpenAlex.

  1. Genomic Data Governance Challenges Between Research and Clinical Care: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  2. Review
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  5. Article
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  8. The Role of Genome Sequencing in Neonatal Intensive Care Units.Annual review of genomics and human genetics · 2022
    Review
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

9 authors at 5 institutions in 2 countries.

Roel H P WoutersDepartment of Medical Humanities, Julius Center, University Medical Center Utrecht, P.O. Box 85500, 3508 GA Utrecht, The Netherlands.
Rieke van der GraafDepartment of Medical Humanities, Julius Center, University Medical Center Utrecht, P.O. Box 85500, 3508 GA Utrecht, The Netherlands.
Tessel RigterDepartment of Clinical Genetics, Section Community Genetics and Amsterdam Public Health Research Institute, Amsterdam University Medical Center, Vrije Universiteit, P.O. Box 7057, 1007 MB Amsterdam, The Netherlands.ORCID 0000-0002-6038-6289
Eline M BunnikDepartment of Medical Ethics, Philosophy and History of Medicine, Erasmus MC, University Medical Centre Rotterdam, P.O. Box 2040, 3000 CA Rotterdam, The Netherlands.
M Corrette PloemSection Health Law, Department of Social Medicine, Amsterdam University Medical Center, University of Amsterdam, P.O. Box 22660, 1100 DD Amsterdam, The Netherlands.ORCID 0000-0003-1466-0619
Guido M W R de WertDepartment of Health, Ethics and Society, Research School CAPHRI for Public Health and Primary Care, Research School GROW for Oncology and Developmental Biology, Maastricht University, P.O. Box 616, 6200 MD Maastricht, The Netherlands.
Wybo J DondorpDepartment of Health, Ethics and Society, Research School CAPHRI for Public Health and Primary Care, Research School GROW for Oncology and Developmental Biology, Maastricht University, P.O. Box 616, 6200 MD Maastricht, The Netherlands.ORCID 0000-0003-4052-7192
Martina C CornelDepartment of Clinical Genetics, Section Community Genetics and Amsterdam Public Health Research Institute, Amsterdam University Medical Center, Vrije Universiteit, P.O. Box 7057, 1007 MB Amsterdam, The Netherlands.ORCID 0000-0002-5397-5544
Annelien L BredenoordDepartment of Medical Humanities, Julius Center, University Medical Center Utrecht, P.O. Box 85500, 3508 GA Utrecht, The Netherlands.
University Medical Center Utrecht · NLMaastricht University · NLVrije Universiteit Amsterdam · NLErasmus MC · NLUniversity of Amsterdam · NL

Funding

ZonMw 80-84600-98-3002
6 · The paper itself

Abstract

Learning healthcare systems have recently emerged as a strategy to continuously use experiences and outcomes of clinical care for research purposes in precision medicine. Although it is known that learning healthcare transitions in general raise important ethical challenges, the ethical ramifications of such transitions in the specific context of precision medicine have not extensively been discussed. Here, we describe three levers that institutions can pull to advance learning healthcare systems in precision medicine: (1) changing testing of individual variability (such as genes); (2) changing prescription of treatments on the basis of (genomic) test results; and/or (3) changing the handling of data that link variability and treatment to clinical outcomes. Subsequently, we evaluate how patients can be affected if one of these levers are pulled: (1) patients are tested for different or more factors than before the transformation, (2) patients receive different treatments than before the transformation and/or (3) patients' data obtained through clinical care are used, or used more extensively, for research purposes. Based on an analysis of the aforementioned mechanisms and how these potentially affect patients, we analyze why learning healthcare systems in precision medicine need a different ethical approach and discuss crucial points to consider regarding this approach.

Indexed as

ethicsgenomicslearning health carelearning healthcare systemsLHSmethodologypersonalized medicineprecision medicinesequencing

Identifiers

PMID34200580
PMCPMC8229357
OpenAlexW3168698431

What OpenQuestion holds

Textmetadata
LicenceCC BY
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 OpenQuestion graph.