McEwen J E, Reilly P R
Eunice Kennedy Shriver Center for Mental Retardation, Waltham, MA 02254.
Am J Hum Genet. 1994 Jul;55(1):196-200.
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.
最近,人们对能否将Guthrie卡片上的干血斑用作研究或检测目的的DNA来源进行了大量讨论。因此,州新生儿筛查实验室保存的Guthrie卡片集合可被视为初具雏形的“DNA库”。这引起了一些关注医疗记录隐私者的担忧。本研究调查了美国州新生儿筛查实验室的政策,涉及它们对Guthrie卡片的保留情况以及允许与各类第三方共享这些卡片的程度。我们发现,尽管大多数实验室即便保留卡片也只保留很短时间,但越来越多的实验室计划长时间保留卡片——在某些情况下甚至无限期保留。我们还发现,尽管大多数实验室在没有书面授权或其他明确许可的情况下不会将卡片上可识别个人身份的血斑提供给第三方,但很多实验室至少会考虑为了研究目的而共享匿名卡片。