The Ethical and Scientific Board of BioJeL

The Ethical and Scientific Board is responsible for examining all requests for biological resources and associated data in an ethical and impartial manner, in line with the best scientific standards and the guidelines set out in the BRC BioJeL's scientific project.

The requests analysis proceeds in 3 steps:

  • Technical feasibility analysis by the Technical Committee of BioJeL
  • Scientific Expertise by the Ethical and Scientific Board of the Jérôme Lejeune Institute
  • Final validation by the CEO of the Jérôme Lejeune Institute

The analytical criteria used by the Scientific Board for these evaluations relate to several items:

  • Technical feasibility (time, quantities)
  • Compatibility with the strategy of BioJeL (compatibility with the priority research programs defined by BioJeL and the Jérôme Lejeune Institute, with prioritization according to the type of request. For example, scientific partnerships are favoured over scientific services)
  • Checking of the legal and regulatory obligations of the person or entity making the request
  • Availability of the samples with respect to consent (patient's non-opposition, or agreement for exporting samples)
  • Agreement of the person or entity responsible for initiating the collection of the samples concerned
  • Priority given to the type of person or entity making the request (hospital establishment, national or international organisation)
  • Availability according to priority rights of other users (Is the being constituded at the request of a researcher? Is the collection under embargo until the publication of the first results?)
  • Conditions of availability (billing, scientific partnership, industrial property rights)
  • Compatibility of the request with the ethics policy of the Jérôme Lejeune Institute and Foundation
  • The ethical relevance of the objectives
  • The ethical quality of the methodological approach

Composition of the Technical Committee

  • The Research Director and members of the CRB BioJeL team

Scientific Committee

  • André MÉGARBANÉ – Professor of Medical Genetics, Faculty of Medicine, Saint-Joseph University, Beirut
  • Clotilde MIRCHER – Geneticist and Head of Consultation at the Institut Jérôme Lejeune
  • Paul BASTARD – Pediatrician, researcher, Hôpital Saint-Louis – Laboratoire de génétique humaine des maladies infectieuses (Institut Imagine, Paris).
  • François MOUTON-LIGER – Researcher INSERM UMR-S144, Hôpital Lariboisière – Specialist in neurodegenerative diseases.
  • Pierre-Marie SINET – Physician INSERM Institut Paul Broca – Specialist in Clinical Genetics, Molecular Genetics and Biochemistry
  • Élise JACQUIER – PhD in Health Ethics, ESTBB teacher in Lyon
  • Marie-Alexandra ALYANAKIAN – MD PhD, Head of PRB, Necker University Hospital
  • Pierre-Yves MAILLARD – MD, Geneticist at Institut Jérôme Lejeune
  • Pierre-Marie SINET – MD, PhD, DR CNRS, Pediatric Immunohematology
  • Marie-Anne CAILLAUD – Biostatistician, IJL promoter project manager
  • Maylis COSTE – Engineer, Biostatistician and Methodologist
  • Élise VIVAR – PhD Neurosciences, Fondation Jérôme Lejeune
  • Chantal Dang – User representative
  • Dorothée Montagutelli – Pediatrician at Institut Lejeune, user representative, AFSA (Association Française du Syndrome d'Angelman)

General Manager of the Jérôme Lejeune Institute