Aaron Goldenberg, Chair of the Forum's Special Projects Committee, is one of the authors on a new article in Public Health Genomics titled "Not Without my Permission: Parents' Willingness to Permit Use of Newborn Screening Samples for Research." This article summarizes results from an internet-based research study on parents' attitudes toward using blood spots from newborn screening for research as well as allowing storage of the spots.
I enjoyed this article because it gives a representative perspective on a present issue in society. Currently, the state of Michigan is keeping stored blood spots indefinitely and allowing research to be conducted on them, yet many parents are unfamiliar with this entire process (let alone even remembering the blood spot was taken after birth). This is a pressing issue that should be thought about carefully by every individual in the United States. This article is a great first step in understanding parents' attitudes toward the storage and use of their child's blood spot samples for research.
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A February 2009 Houston Chronicle contained an article on this topic:
ReplyDeletehttp://www.chron.com/disp/discuss.mpl/headline/metro/6277173.html
I don't know if this document was available prior to February 2009, but the Texas Department of State Health Services has a "Directive to Destroy" form posted on their Newborn Screening Laboratory website. This Directive requests that bloodspot cards be destroyed after newborn screening. If other states offer this option, it might be helpful to parents concerned about samples being used in research studies.