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

Research output: Contribution to journalReview articleAcademicpeer-review

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.

Original languageEnglish
Article number539
JournalJournal of personalized medicine
Volume11
Issue number6
DOIs
Publication statusPublished - 10 Jun 2021

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