Privacy and confidentiality in the publication of pedigrees : A survey of investigators and biomedical journals.
Context-Pedigree diagrams efficiently communicate family information to genetics investigators ; however, the publication of pedigrees poses a risk to the privacy and confidentiality of individuals depicted in the diagrams.
Two sets of authoritative guidelines have been published to protect the privacy and confidentiality of subjects, but the influence of these guidelines on publication practices for pedigrees is unknown.
To determine the attitudes, practices, and experiences of investigators and journals with respect to privacy and confidentiality concerns in the publication of pedigrees.
- Investigators who have published pedigrees and editors of 26 biomedical joumals were surveyed.
Joumals were reviewed for content in their « information for authors » sections and for documentation of informed consent in articles containing pedigrees.
Outcome Measures-Practices regarding confidentiality and privacy reported by investigators and editors.
Of 226 surveys sent to investigators, 177 were returned (78% response rate).
Sixty-one investigators (36%) stated that family members were not informed that their pedigree would be published ; 131 (78%) do not obtain informed consent specifically for pedigree publication and only 12 (28%) of the 43 who obtained consent obtained consent from all family members depicted. (...)
Mots-clés Pascal : Pedigree, Critère sélection, Enquête par correspondance, Information biomédicale, Méthodologie, Confidentialité, Guide pratique, Homme, Organisation santé
Mots-clés Pascal anglais : Pedigree, Selection criterion, Mail inquiry, Biomedical information, Methodology, Confidentiality, Handbook, Human, Public health organization
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 98-0321931
Code Inist : 002B30A03C. Création : 27/11/1998.