GUIDELINES FOR THE RETENTION, STORAGE, AND USE OF RESIDUAL DRIED BLOOD SPOT SAMPLES AFTER NEWBORN SCREENING ANALYSIS - STATEMENT OF THE COUNCIL-OF-REGIONAL-NETWORKS-FOR-GENETIC-SERVICES

These guidelines provide scientific information for policy development by state health departments considering appropriate use of newborn sc reening specimens after screening tests are finished, Information was collected, debated, and formulated into a policy statement by the Newb orn Screening Committee of the Council of Regional Networks for Geneti c Services (CORN), a federally funded national consortium of represent atives from 10 regional genetics networks. Newborn screening programs vary widely in approaches and policies concerning residual dried blood spot samples (DBS) collected for newborn screening. Recognition of th e epidemiological utility of DBS samples for HIV seroprevalence survey s and a growing interest in DBSs for DNA analysis has intensified cons ideration of issues regarding retention, storage, and use of residual DBS samples. Potentially these samples provide a genetic material ''ba nk'' for all newborns nationwide. Their value as a resource for other uses has already been recognized by scientists, administrators, and ju dicial officials, Programs should promulgate rules for retention and u se of residual newborn screening DBS samples based on scientifically v alid information. Banking of newborn samples as sources of genetic mat erial should be considered in light of potential benefit or harm to so ciety. (C) 1996 Academic Press, Inc.