Stored Guthrie cards as DNA "banks".
Recently there has been much discussion about the possibility of using dried blood spots on Guthrie cards as a source of DNA for research or testing purposes. The collections of Guthrie cards stored by state newborn-screening laboratories can thus be viewed as inchoate "DNA banks." This has generated concern among some persons who are interested in preserving the privacy of medical records. This study examines the policies of state newborn-screening laboratories in the United States, regarding their retention of Guthrie cards and the degree to which they permit the sharing of those cards with various third parties. We found that although most laboratories retain their cards, if at all, for only a short time, a growing number plan to keep them for an extended period--and, in several cases, indefinitely. We also found that although most laboratories would decline to release individually identifiable blood spots from the cards to third parties without a written release or other explicit authorization, a large number would at least consider sharing anonymous cards for research purposes.
McEwen
J E
JE
Eunice Kennedy Shriver Center for Mental Retardation, Waltham, MA 02254.
Reilly
P R
PR
D018070:Biological Specimen Banks; D003219:Confidentiality; D030561:Databases, Nucleic Acid; D030881:Disclosure; D030661:Genetic Privacy; D036281:Genetic Research; D005820:Genetic Testing / Q000331:legislation & jurisprudence*; D033161:Government Regulation; D006801:Humans; D007231:Infant, Newborn; D007753:Laboratories / Q000331:legislation & jurisprudence; D035846:Law Enforcement; D037141:Mandatory Programs; D008499:Medical Records / Q000331:legislation & jurisprudence*; D015997:Neonatal Screening / Q000331:legislation & jurisprudence*; D011795:Surveys and Questionnaires