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Ethical issues related to computerised family medical histories in sickle cell disease: Inforare
  1. Sandra Franrenet1,
  2. Nathalie Duchange1,
  3. Fréderic Galactéros2,
  4. Catherine Quantin3,4,
  5. Olivier Cohen4,5,
  6. Ruben Nzouakou2,
  7. Sophie Sudraud1,
  8. Christian Hervé1,
  9. Grégoire Moutel1
  1. 1Laboratoire d'Ethique Médicale et Médecine Légale & Réseau Inserm de recherche en éthique, Université Paris Descartes, Faculté de Médecine, Paris, France
  2. 2Unité des maladies génétiques du globule rouge, Centre Hospitalo-Universitaire Henri Mondor de Créteil, Assistance publique Hôpitaux de Paris (AP-HP), Université Paris XII, Paris, France
  3. 3Inserm U 866, Université de Bourgogne, Faculté de médecine, Dijon, France
  4. 4Département de biostatistique et informatique médicale, CHU Dijon, Dijon, France
  5. 5HC Forum, Université de Grenoble, Grenoble, France
  1. Correspondence to Sandra Franrenet, Laboratoire d'Ethique Médicale et Médecine Légale, Faculté de médecine de Paris Descartes, 45 rue des Saints-Pères, Paris 75006, France; sandra.franrenet{at}gmail.com

Abstract

The Inforare project aims to set up a system for the sharing of clinical and familial data, in order to study how genes are related to the severity of sickle cell disease. While the computerisation of clinical records represents a valuable research goal, an ethical framework is necessary to guarantee patients' protection and their rights in this developing field. Issues relating to patient information during the Inforare study were analysed by the steering committee. Several major concerns were discussed by the committee and formalised in the patients' information letter: educating patients to aid the recruitment of family members, rules of confidentiality and the disclosure of aggregate, individual and unexpected research results. This paper presents the main issues addressed.

  • Applied and professional ethics
  • biomedical research
  • confidentiality/privacy
  • database
  • ethics
  • general
  • genetic
  • sickle cell

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Footnotes

  • Funding Other funders: ANR, 212 rue de Bercy, 75012 Paris, France.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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