Christian Hervé, Guillaume Vogt, Pierre Laurent-Puig, Christophe Tourneau, Charles-Henry Frouart, Marie-France Mamzer-Bruneel & Henri-Corto Stoeklé
Science and Engineering Ethics 24 (1):307-322 (2018)
AbstractThe practice and development of modern medicine requires large amounts of data, particularly in the domain of cancer. The future of personalized medicine lies neither with “genomic medicine” nor with “precision medicine”, but with “data medicine”. The establishment of this DM has required far-reaching changes, to establish four essential elements connecting patients and doctors: biobanks, databases, bioinformatic platforms and genomic platforms. The “transformation” of scientific research areas, such as genetics, bioinformatics and biostatistics, into clinical specialties has generated a new vision of care. Molecular tumor boards are one response to these changes and are now providing better access to next-generation sequencing and new cancer treatments to patients with inoperable or metastatic cancers, and those for whom the usual treatment has failed. However, MTB face a crucial ethical challenge: maintaining and improving the trust of patients, clinicians, researchers and industry in academic medical centers supported by private or public funding rather than providing genetic data directly to private companies. We believe that, in this era of DM, appropriate modern digital communication networks will be required to maintain this trust and to improve the organization and effectiveness of the system. There is, therefore, a need to reconsider the form and content of informed consent documents at all academic medical centers and to introduce dynamic and electronic informed consent.
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Citations of this work
Ownership of Genetic Data: Between Universalism and Contextualism?Henri-Corto Stoeklé & Christian Hervé - 2021 - American Journal of Bioethics 21 (12):75-77.
Systemic Modelling in Bioethics.Henri-Corto Stoeklé, Philippe Charlier, Marie-France Mamzer-Bruneel, Christian Hervé & Guillaume Vogt - 2020 - The New Bioethics 26 (3):197-209.
Genetic Data, Two-Sided Markets and Dynamic Consent: United States Versus France.Henri-Corto Stoeklé, Mauro Turrini, Philipe Charlier, Jean-François Deleuze, Christian Hervé & Guillaume Vogt - 2019 - Science and Engineering Ethics 25 (5):1597-1602.
Data Medicine: ‘Broad’ or ‘Dynamic’ Consent?Henri-Corto Stoeklé, Elisabeth Hulier-Ammar & Christian Hervé - forthcoming - Public Health Ethics.
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