Consenting postpartum women for use of routinely collected biospecimens and/or future biospecimen collection

Kozinetz, Claudia A.; Royse, Kathryn E.; Graham, Sarah; Yu, Xiaoying; Moye, John; Selwyn, Beatrice J.; Forman, Michéle R.; Caviness, Chantal

doi:10.1007/s12687-016-0261-9

Cited by 5 publications

(3 citation statements)

References 16 publications

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“…PRESTO participants have higher educational attainment and annual income than the general population, which may limit the generalizability of our findings. Other studies have not identified demographic characteristics that may influence participation using mail-based biospecimen collection methods ( 16 , 17 ).…”

Section: Resultsmentioning

confidence: 99%

Feasibility of mail-based biospecimen collection in an online preconception cohort study

Koenig

Wesselink

Kuriyama

et al. 2023

Front. Reprod. Health

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BackgroundProspective cohort studies that enroll participants before conception are crucial for deepening scientific understanding of how the preconception environment influences reproductive outcomes. While web-based research methods provide efficient and effective strategies to collect questionnaire-based data, few of these studies incorporate biospecimen collection, which can enhance the validity of exposure assessment. There is limited literature on the feasibility and cost-effectiveness of collecting biospecimens in web-based preconception cohort studies.MethodsWe evaluated the feasibility and cost-effectiveness of in-clinic and mail-based biospecimen collection in Pregnancy Study Online (PRESTO), a North American web-based preconception cohort study. Both members of the couple were eligible to participate if their conception attempt time was ≤3 months at enrollment. We invited study participants from the Boston, MA and Detroit, MI metropolitan areas to attend a study visit and provide urine and blood (hereafter “in-clinic protocol”). We invited all other participants to complete mail-based collection of urine and blood spots (hereafter “mail-based protocol”). We compared overall consent and protocol completion rates, demographic characteristics of those who consented and completed either of the protocols, and costs between mail-based and in-clinic protocols for biospecimen collection. Finally, we described logistical challenges pertaining to reliance on mail-based delivery of time-sensitive biospecimens compared with in-clinic methods.ResultsDuring January 2022-July 2022, 69% of female participants (134/195) and 42% of male participants (31/74) consented to participate in the mail-based protocol. Consent rates for the in-clinic protocol were 39% for female participants (289/739 during March 2014-July 2022) and 25% for male participants (40/157 during March 2017-July 2022). Participants who consented to participate were generally of higher socioeconomic position than non-participants. Deviations from the protocol occurred more frequently within the mail-based protocol but were easily corrected. The cost per participant enrolled was similar across protocols (mail-based: $276.14 vs. in-clinic: $270.38).ConclusionsOur results indicate that mail-based collection of biospecimens may create opportunities to recruit a larger and more geographically diverse participant population at a comparable cost-per-participant enrolled to in-clinic methods.

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Section: Resultsmentioning

confidence: 99%

Feasibility of mail-based biospecimen collection in an online preconception cohort study

Koenig

Wesselink

Kuriyama

et al. 2023

Front. Reprod. Health

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“…Our findings are congruent with previous studies that found Hispanic women less likely to participate in the collection of biospecimens at the time of pregnancy (Nechuta et al 2012). Among postpartum women (58% Hispanic) asked about residual and future biospecimen collection related to their child, race did not have an impact (Kozinetz et al 2016). Given the increase in the US Hispanic population, it is critical to improve methods for researchers to appreciate the beliefs that might impact enrollment in biobanking studies.…”

Section: Discussionmentioning

confidence: 99%

Willingness of women to participate in obstetrical and pediatric research involving biobanks

et al. 2019

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Use of biobanks for future genetic/genomic testing has increased. Biospecimens are increasingly being collected from infants/ children; however, little is known about attitudes towards collection of biospecimens from postpartum women and their child. Using a hypothetical consent, this study investigated willingness to participate and attitudes, beliefs, and concerns related to consent materials requesting the biobanking genetic samples. A cross-sectional mixed methods design included women who reviewed a hypothetical consent related to biobanking genetic samples. Women were asked about their willingness to participate, followed by a focus group about biobanks and genetic/genomic testing. Post-focus group questionnaires assessed willingness to participate, the influence of study characteristics, and attitudes about genetic testing. Women (N = 37) were 29.0± 7.3 years of age (range 19-44); 51% had children and 28% were currently pregnant. A total of 46% were Hispanic (H), 38% were White non-Hispanic (WNH), and 16% were Native American (NA). Seventy-six percent (28/37) initially indicated that they would participate in the hypothetical study. Race and ethnicity impacted whether women would participate. Fewer NA women indicated that they would participate compared with H women and with WNH women (p < 0.02). Age, pregnancy status, having children, education level, insurance status, and income had no impact on participation decision and willingness to biobank specimens. NA and H women indicated that they were less likely than WNH women to agree to participate in a long-term biobank study. Given the importance of determining the genetic influence of health and disease, it is critical to attend to the questions and concerns of minority women regarding genetic studies.

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“…In 2007, more than 70 percent of pregnant women who delivered a baby received prenatal care in the first trimester (HHS, 2016). Some pregnant women do not receive prenatal care, but they could be enrolled by study staff soon after the birth of the child (Kozinetz et al, 2016). Pregnant women who neither seek prenatal care nor give birth in a hospital are not covered by the design, but this non-coverage is minimal-in 2012, births outside of hospitals represented less than 1.4 percent of all births in the United States (MacDorman et al, 2014).…”

Section: Sample Design and Sample Sizementioning

confidence: 99%

Methods for a National Birth Cohort Study

Duncan¹,

Lesser²,

Entwisle³

et al. 2016

NAM Perspectives

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This paper is part of the National Academy of Medicine Perspectives series, Lifelong Impact: Why the United States Needs a National Birth Cohort Study. To download both papers in the series, visit www.nam.edu/lifelonghealth. Background: With funding from the Robert Wood Johnson Foundation, the National Academy of Medicine (NAM) and the Division of Behavioral and Social Sciences and Education of the National Academies of Sciences, Engineering, and Medicine held two expert meetings to identify the reason why the US needs a longitudinal birth cohort study and the methods that can be used to make its implementation successful. The meetings drew on the National Research Council/Institute of Medicine report The National Children's Study 2014: An Assessment. In addition to engaging a diverse array of stakeholders from academia, philanthropy, local communities, industry, and government, the meetings included discussions about how to design a national longitudinal cohort study that is multidisciplinary, focuses on the main drivers of health, engages communities, employs a diverse set of data sources, and includes innovative techniques in data analysis. Discussions included how to use the findings from such a study to improve and direct resources toward improvements in the drivers of health. The final product of this effort is Lifelong Impact: Why the United States Needs a National Birth Cohort Study, a two-paper NAM Perspectives series. The goal of the series is to provide input into and catalyze action toward improvements in the design of future longitudinal birth cohort studies. About NAM Perspectives: NAM Perspectives are expert commentaries and discussion papers by leading voices in health and health care. They are not reports of the National Academy of Medicine or the National Academies of Sciences, Engineering, and Medicine and therefore are not subject to their review processes. Learn more at www.nam.edu/perspectives.

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Consenting postpartum women for use of routinely collected biospecimens and/or future biospecimen collection

Cited by 5 publications

References 16 publications

Feasibility of mail-based biospecimen collection in an online preconception cohort study

Feasibility of mail-based biospecimen collection in an online preconception cohort study

Willingness of women to participate in obstetrical and pediatric research involving biobanks

Methods for a National Birth Cohort Study

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