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

Journal of Personalized Medicine

Tessel Rigter¹  Martina C. Cornel¹  Wybo J. Dondorp²  Guido M. W. R. de Wert²  Eline M. Bunnik³  Roel H. P. Wouters⁴  Annelien L. Bredenoord⁴  Rieke van der Graaf⁴  M. Corrette Ploem⁵ 

[1] Department 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;Department 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;Department of Medical Ethics, Philosophy and History of Medicine, Erasmus MC, University Medical Centre Rotterdam, P.O. Box 2040, 3000 CA Rotterdam, The Netherlands;Department of Medical Humanities, Julius Center, University Medical Center Utrecht, P.O. Box 85500, 3508 GA Utrecht, The Netherlands;Section Health Law, Department of Social Medicine, Amsterdam University Medical Center, University of Amsterdam, P.O. Box 22660, 1100 DD Amsterdam, The Netherlands;

关键词: learning health care;    learning healthcare systems;    LHS;    precision medicine;    personalized medicine;    genomics;   

DOI  :  10.3390/jpm11060539

来源: DOAJ

【 摘 要 】

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.

【 授权许可】

Unknown