Ensuring Confidentiality in the Publication of Pedigrees

This project will address problems in maintaining privacy and confidentiality in the publication of pedigrees in the biomedical literature. The study will: (1) conduct a survey of scientific journal editors to assess their policies and practices with respect to confidentiality in the publication of pedigrees; (2) conduct a survey of investigators who have published pedigrees recently with respect to their practices and attitudes related to confidentiality and the publication of pedigrees; and (3) conduct a two day consensus conference of investigators, editors, ethicists and lay representatives to develop specific guidelines for IRBs and policy recommendations for medical journals. The results of the surveys and consensus conference will be published in a peer reviewed journal. Additional strategies for enhancing awareness of the resulting guidelines and policy recommendations will be developed at the conference.