Abstract
The National Children’s Study (NCS) Harris County, Texas Study Center participated in the NCS Provider Based Sampling (PBS) substudy of the NCS Vanguard Phase pilot. As part of the hospital-based birth cohort component of the PBS substudy, we conducted a secondary data analysis to evaluate the proportion of postpartum women who consented to future biospecimen collection alone and to both future collection and use of residual birth biospecimens. In phase 1, 32 postpartum women at one hospital were asked to consent only to maternal future biospecimen collection. In phase 2, 40 other postpartum women from the same hospital were asked for an additional consent to use residual clinical biospecimens from the birth event that otherwise would be discarded, including cord blood and maternal blood and urine. Among 103 eligible women, a total of 72 participated. They were 28.3 ± 5.9 years old on average; 58 % were Hispanic; 63 % consented in English, and 37 % in Spanish; 39 % had some college education; 42 % were married; 60 % had an annual family income <$30,000; and 51 % were employed. In phase 1, 59 % consented to future biospecimen collection, and in phase 2, 95 % consented to both future collection and use of at least one residual birth biospecimen, with a difference between phases of 36 % [95 % CI 17–54 %]. Demographic characteristics did not differ among those who did and did not consent. Postpartum women were significantly more likely to grant consent for use of future and residual hospital-obtained biospecimens than future biospecimen collection alone.
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Acknowledgments
We would like to acknowledge the work of Vivian Driskell, Katherine Addy, Angelique D. Clarke, and Dinah J. Pena in collecting and entering data for this study. The findings and conclusions in this report are those of the authors and do not necessarily represent the views of the National Institutes of Health or the U.S. Department of Health and Human Services.
The study was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development contract HHSN275200800020C.
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Kozinetz, C.A., Royse, K., Graham, S.C. et al. Consenting postpartum women for use of routinely collected biospecimens and/or future biospecimen collection. J Community Genet 7, 153–158 (2016). https://doi.org/10.1007/s12687-016-0261-9
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DOI: https://doi.org/10.1007/s12687-016-0261-9