Ethical guideposts for allelic variation databases

Basically, a mutation database (MDB) is a repository where allelic variatio ns are described and assigned within a specific gene locus. The purposes of an MDB may vary greatly and have different content and structure. The cura tor of an electronic and computer-based MDB will provide expert feedback (c linical and research). This requires ethical guideposts. Going to direct on -line public access for the content of an MDB or to interactive communicati on also raises other considerations. Currently, HUGO's MDI (Mutation Databa se Initiative) is the only integrated effort supporting and guiding the coo rdinated deployment of MDBs devoted to genetic diversity. Thus, HUGO's ethi cal "Statements" are applicable. Among the ethical principles, the obligati on of pre serving the confidentiality of information transferred by a colla borator to the curator is particularly important. Thus, anonymization of su ch data prior to transmission is essential. The 1997 Universal Declaration on the Human Genome and Human Rights of UNESCO addresses the participation of vulnerable persons. Researchers in charge of MDBs should ensure that inf ormation received on the testing of children or incompetent adults is subje ct to ethical review and approval in the country of origin. Caution should be taken against the involuntary consequences of public disclosure of resul ts without complete explanation. Clear and enforceable regulations must be developed to protect the public against misuse of genetic databanks. Intera ction with a databank could be seen as creating a "virtual" physician-patie nt relationship. However interactive public MDBs should not give medical ad vice. We have identified new social ethical principles to govern different levels of complexity of genetic information. They are: reciprocity, mutuali ty, solidarity, and universality. Finally, precaution and prudence at this early stage of the MDI may not only avoid ethically inextricable conundrums but also provide for the respect for the rights and interests of all those involved. Hum Mutat 15:30-35, 2000. (C) 2000 Wiley-Liss, Inc.