Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project Survey assessing data sharing in leukodystrophies

• Published in: European journal of human genetics : EJHG Vol. 24; no. 3; pp. 338 - 43
• Main Authors: Darquy, Sylviane, Moutel, Grégoire, Lapointe, Anne-Sophie, d'Audiffret, Diane, Champagnat, Julie, Guerroui, Samia, Vendeville, Marie-Louise, Boespflug-Tanguy, Odile, Duchange, Nathalie
• Format: Journal Article
• Language: English
• Published: Nature Publishing Group 29-02-2016
• Subjects: Ethics; Genetics; Human health and pathology; Life Sciences; Pediatrics; Informed Consent; Patient opinion; Rare disease; Questionnaires; Database; Leukodystrophies
• ISSN: 1018-4813; 1476-5438
• DOI: 10.1038/ejhg.2015.115

The purpose of this study was to explore patient and family views on the sharing of their medical data in the context of compiling a European leukodystrophies database. A survey questionnaire was delivered with help from referral centers and the European Leukodystrophies Association, and the questionnaires returned were both quantitatively and qualitatively analyzed. This study found that patients/families were strongly in favor of participating. Patients/families hold great hope and trust in the development of this type of research. They have a strong need for information and transparency on database governance, the conditions framing access to data, all research conducted, partnerships with the pharmaceutical industry, and they also need access to results. Our findings bring ethics-driven arguments for a process combining initial broad consent with ongoing information. On both, we propose key item-deliverables to database participants.