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Related Concept Videos

Nurses' Legal Responsibilities I01:27

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In healthcare, informed consent is a crucial process that involves thoroughly communicating medical treatment options to patients, including benefits, risks, potential side effects, and alternatives. This process enables patients to make well-informed decisions about their care, ensuring they understand the implications of their choices before consenting to or refusing treatment.
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Related Experiment Video

Updated: Mar 7, 2026

A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
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[Toward dynamic informed consent].

Henri-Corto Stoeklé1, Jean-François Deleuze2, Guillaume Vogt3

  • 1Laboratoire d'éthique médicale et médecine légale, EA4569, Université Paris Descartes, Centre universitaire des Saints Pères, 45, rue des Saints-Pères, 75006 Paris, France - Cancer research for personalized medicine (CARPEM), Paris Descartes, APHP (HEGP, Cochin, Necker) Inserm, Paris, France.

Medecine Sciences : M/S
|February 28, 2017
PubMed
Summary

Personalized medicine relies on mass data, including genetic information. A dynamic, electronic informed consent model is proposed to address data protection and ethical challenges in this evolving field.

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Area of Science:

  • Genomic Medicine
  • Bioethics
  • Health Informatics

Background:

  • Personalized medicine, or data medicine, aims to tailor treatments using large datasets from biological samples and clinical information.
  • The rapid availability of information online, especially genetic data, presents significant challenges regarding data protection, usage, and ethical considerations.
  • Current informed consent models are outdated and do not adequately address the dynamic nature of modern medicine and data sharing.

Purpose of the Study:

  • To explore the challenges in protecting genetic data within the context of personalized medicine.
  • To propose a novel approach to informed consent that aligns with the advancements in personalized medicine.
  • To advocate for clear legal, moral, and ethical frameworks to support the development of personalized medicine.

Main Methods:

  • Review of existing legal and ethical frameworks surrounding genetic data.
  • Analysis of the limitations of traditional informed consent models.
  • Description of a "dynamic" and "enriched" electronic consent model.

Main Results:

  • Traditional informed consent is insufficient for the complexities of personalized medicine.
  • Electronic, dynamic, and enriched consent offers a flexible solution for data sharing and patient engagement.
  • The proposed model facilitates the secure and ethical use of patient data for tailored treatments.

Conclusions:

  • A dynamic and enriched electronic informed consent is crucial for the advancement of personalized medicine.
  • Addressing data protection and ethical concerns is paramount for patient trust and data utilization.
  • This model supports real-time data exchange between patients, clinicians, researchers, and industry partners.