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. 2014 Nov;164A(11):2739-44.
doi: 10.1002/ajmg.a.36694. Epub 2014 Aug 4.

What parents want to know about the storage and use of residual newborn bloodspots

Jeffrey R Botkin  1 , Erin Rothwell, Rebecca A Anderson, Aaron Goldenberg, Miriam Kuppermann, Siobhan M Dolan, Nancy C Rose, Louisa Stark
Affiliations

What parents want to know about the storage and use of residual newborn bloodspots

Jeffrey R Botkin et al. Am J Med Genet A. 2014 Nov.

Abstract

Many state newborn screening programs retain residual newborn screening bloodspots for a variety of purposes including quality assurance, biomedical research, and forensic applications. This project was designed to determine the information that prospective parents want to know about this practice. Eleven focus groups were conducted in four states. Pregnant women and their partners and parents of young children (N = 128) were recruited from the general public. Focus group participants viewed two educational movies on newborn screening and DBS retention and use. Transcripts were analyzed with qualitative methods and the results were synthesized to identify key information items. We identified 14 categories of information from the focus groups that were synthesized into seven items prospective parents want to know about residual DBS. The items included details about storage, potential uses, risks and burdens, safeguards, anonymity, return of results, and parental choice. For those state programs that retain residual dried bloodspots, inclusion of the seven things parents want to know about residual dried bloodspots in educational materials may improve parental understanding, trust, and acceptance of the retention and use of stored bloodspots.

Keywords: dried bloodspots; education; newborn screening; public health; research.

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References

    1. American Academy of Pediatrics Serving the family from birth to the medical home. Newborn screening: A blueprint for the future - A call for a national agenda on state newborn screening programs. Pediatrics. 2000;106:389–422. - PubMed
    1. Araia M, Potter B. Newborn screening education on the internet: a content analysis of North American newborn screening program websites. J Community Genet. 2011;2:127–134. - PMC - PubMed
    1. Arnold CL, Davis TC, Frempong JO, Humiston SG, Bocchini A, Kennen EM, Lloyd-Puryear M. Assessment of newborn screening parent education materials. Pediatrics. 2006;117:S320–325. - PubMed
    1. Baddeley A. The magical number seven: still magic after all these years? Psychol Rev. 1994;101:353–356. - PubMed
    1. Bombard Y, Miller FA, Hayeems RZ, Carroll JC, Avard D, Wilson BJ, Little J, Bytautas JP, Allanson J, Axler R, Giguere Y, Chakraborty P. Citizens' values regarding research with stored samples from newborn screening in Canada. Pediatrics. 2012;129:239–247. - PubMed

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