This project will address problems in maintaining privacy and confidentiality in the publication of pedigrees in the biomedical literature. The publication of pedigrees in publically available journals poses a risk to the privacy and confidentiality of research participants. Existing guidelines have not adequately dealt with the range of problems raised by the publication of pedigrees. There is evidence that current practices and policies of investigators and journals are not consistent with the limited guidelines that do exist on this issue. The investigators propose to (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; 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.
| Botkin, J R; McMahon, W M; Smith, K R et al. (1998) Privacy and confidentiality in the publication of pedigrees: a survey of investigators and biomedical journals. JAMA 279:1808-12 |
