Policy issues and stakeholder concerns regarding the storage and use of residual newborn dried blood samples for research.
Newborn screening is an important public health programs in the United States. Over 4 million infants are screened each year for a number of conditions. There is a growing need for more explicit state policies governing the storage and research use of residual newborn samples. This paper provides an overview of newborn screening and issues related to policies of residual newborn samples as well as attitudes and opinions from stakeholders. Three groups (n = 21) were conducted with stakeholders: an African American group, a Pediatrician group and a Mothers of young children group. Despite the differences between these groups, consistent themes emerged from all groups that may be relevant for policy development governing the storage and use of residual newborn samples. The data from this exploratory study suggest that future policy developments with the newborn screening program warrant further public input on these topics.
Rothwell
Erin
E
University of Utah, Salt Lake City, UT 84112, USA. erin.rothwell@nurs.utah.edu
Anderson
Rebecca
R
Botkin
Jeffrey
J
D001800:Blood Specimen Collection / Q000941:ethics / Q000592:standards; D017144:Focus Groups; D036281:Genetic Research / Q000941:ethics / Q000331:legislation & jurisprudence; D007722:Health Knowledge, Attitudes, Practice; D006805:Human Experimentation / Q000331:legislation & jurisprudence; D006801:Humans; D007231:Infant, Newborn; D015997:Neonatal Screening / Q000941:ethics / Q000592:standards; D033282:Parental Consent / Q000331:legislation & jurisprudence; D011640:Public Policy; D014481:United States
Arch Intern Med. 2005 Mar 28;165(6):652-5
15795341
Pediatrics. 2006 May;117(5 Pt 2):S326-40
16735260
Public Underst Sci. 2008 Apr;17(2):245-59
19391380
Res Nurs Health. 2000 Aug;23(4):334-40
10940958
Arch Intern Med. 2002 Jul 8;162(13):1457-62
12090881
Birth. 2007 Sep;34(3):238-44
17718874
Pediatrics. 2005 Oct;116(4):862-71
16199695
Pediatrics. 2006 May;117(5 Pt 2):S212-52
16735250
Pediatrics. 2000 Aug;106(2 Pt 2):389-422
10947682
Am J Public Health. 1997 Aug;87(8):1280-8
9279262
Genet Med. 2011 Jul;13(7):621-4
21602691
Health Promot Pract. 2011 Jul;12(4):551-60
20160021
J Gen Intern Med. 1999 Sep;14(9):537-46
10491242
Qual Health Res. 1993 Feb;3(1):112-21
8457790
Am Fam Physician. 2008 Apr 1;77(7):987-94
18441864
Am J Public Health. 1982 Dec;72(12):1396-400
7137438
BMJ. 1995 Jul 29;311(7000):299-302
7633241
N Engl J Med. 2003 Aug 7;349(6):562-9
12904522
Pediatrics. 2006 May;117(5):1793-9
16651338
Soc Sci Med. 2001 Mar;52(5):797-808
11218181
J Law Med Ethics. 2004 Winter;32(4):741-8
15807362
Pediatrics. 2005 May;115(5):1268-72
15867034
Public Underst Sci. 2005 Jan;14(1):47-65
15822248
Am J Public Health. 1997 Nov;87(11):1773-8
9366634
Biochem Mol Med. 1996 Apr;57(2):116-24
8733889
J Health Psychol. 1998 Jul;3(3):329-48
22021395
J Pediatr. 2006 May;148(5):618-22
16737872