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Informing New Mothers about Newborn Screening Bloodspot Repositories during Postpartum Hospitalization

Newcomb, Patricia PhD, RN; True, Barbara MN, CNS, RNC-OB, C-EFM; Wells, Jo Nell PhD, RN, OCN; Walsh, Judith PhD, RN; Pehl, Samantha DNP, RN, CNM, FNP-C

MCN: The American Journal of Maternal/Child Nursing: November/December 2019 - Volume 44 - Issue 6 - p 332–337
doi: 10.1097/NMC.0000000000000562
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Purpose: The primary goals of the study were to assess maternal knowledge and attitudes about the newborn screening bloodspot repository program in Texas and to evaluate the effect of a video about the bloodspot repository on the rate of parental permission to store infant bloodspots.

Design: This descriptive, comparative study used descriptive statistics, nonparametric tests, and multivariable analyses to describe the sample, compare groups, and determine associations between factors that influenced parents' decisions to permit state storage of infant bloodspots.

Results: There were 465 mothers in the study. Maternal knowledge about basic genetics and risks of genetic testing was poor, but mothers reported strong trust in the state to make good decisions about using genetic material for research. Race, ethnicity, and attitude toward research significantly influenced decisions to opt-in to the bloodspot storage program. Postpartum nurses provided the bulk of information about newborn screening and dried bloodspots, although 2/3 of respondents would have preferred to obtain this information prior to birth.

Clinical Implications: Although postpartum nurses are the most common source of information about newborn screening, genuine informed consent for bloodspot storage is questionable. Information about newborn screening and bloodspot storage needs to be addressed in community venues prior to birth.

In this study, new mothers were asked about their knowledge of newborn screening and the bloodspot repository program in Texas. Maternal knowledge about basic genetics and risks of genetic testing was poor, but mothers reported strong trust in the state to make good decisions about using genetic material for research. Postpartum nurses are the most common source of information about newborn screening. Most new mothers do not have enough knowledge to give true informed consent for bloodspot storage.

Patricia Newcomb is a Nurse Scientist, Texas Health Resources, Texas Health Harris Methodist Fort Worth Hospital, Fort Worth, TX. Dr. Newcomb can be reached via e-mail at pnewcombfellow@gmail.com

Barbara True is a Maternal-Child Clinical Nurse Specialist, Texas Health Resources, Texas Health Arlington Memorial Hospital, Arlington, TX.

Jo Nell Wells is a Nurse Scientist, Texas Health Resources, Texas Health Alliance Hospital, Fort Worth, TX.

Judith Walsh is a Nurse Scientist, Texas Health Resources, Texas Health Presbyterian Plano Hospital, Plano, TX.

Samantha Pehl is a Nurse Scientist, Texas Health Resources, Texas Health Stephenville Hospital, Stephenville, TX.

The authors declare no conflicts of interest.

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