"The future of personalized medicine lies neither with 'genomic medicine' nor with 'precision medicine', but with 'data medicine'..."

Sci Eng Ethics. 2017 Mar 9. doi: 10.1007/s11948-017-9880-8. [Epub ahead of print]

Molecular Tumor Boards: Ethical Issues in the New Era of Data Medicine.

Stoeklé HC1,2, Mamzer-Bruneel MF1,2,3, Frouart CH1, Le Tourneau C4,5, Laurent-Puig P2,6, Vogt G7,8, Hervé C1,2.

Author information

1

Medical Ethics and Legal Medicine Laboratory EA4569, Paris Descartes University, Centre Universitaire des Saints-Pères, Paris, France.

2

Cancer Research for Personalized Medicine (CARPEM), Paris Descartes, APHP (HEGP, Cochin, Necker) INSERM, Paris, France.

3

Assistance Publique-Hôpitaux de Paris AP-HP, Necker-Enfants Malades Hospital, Paris, France.

4

Department of Medical Oncology, Institut Curie, Paris, Saint-Cloud, France.

5

EA7285, Versailles University, Saint-Quentin-en-Yvelines, Versailles, France.

6

Inserm UMR-S1147, Paris Descartes University, Centre Universitaire des Saints-Pères, Paris, France.

7

Medical Ethics and Legal Medicine Laboratory EA4569, Paris Descartes University, Centre Universitaire des Saints-Pères, Paris, France. guillaume.vogt@inserm.fr.

8

Neglected Human Genetics, Centre National de Genotypage (CNG-CEA), Evry, France. guillaume.vogt@inserm.fr.

Abstract

The 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" (DM) (big data, data mining). 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 (MTB) are one response to these changes and are now providing better access to next-generation sequencing (NGS) 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 (IC) documents at all academic medical centers and to introduce dynamic and electronic informed consent (e-IC).