Empirical data about women's attitudes toward a biobank focused on pregnancy outcomes

Abstract

The Chicago Lying-in Pregnancy Program (CLIPP) is a biobank designed to collect biological samples from pregnant women to study issues related to pregnancy. Despite the large number of biobanking initiatives in obstetric populations around the world, there is no published research that examines what pregnant women understand about enrollment into such programs and what their attitudes and beliefs are toward the research and its potential outcomes. Postpartum women 18 years or older who delivered at the University of Chicago Hospitals and had live infants on the General Care Nursery service were approached about participating in a survey about the CLIPP biobank and about a hypothetical pediatric biobank. Ninetythree women who had been recruited to participate in CLIPP agreed to participate in this research. Sixty-three women (68%) had previously agreed to participate in CLIPP; and 30 (32%) had refused. Both participants and non-participants understood that CLIPP had the main goal of advancing science, although almost one-half of the respondents thought that participation in CLIPP would benefit the individual participants. Eighty-five (92%) correctly believed that the research team would keep the medical information private. There was widespread optimism that the research would yield significant results. Importantly, there was no difference in these beliefs between those who enrolled and those who did not enroll in CLIPP. While education and socioeconomic status correlated with greater understanding about the methods and goals of the program, greater understanding did not correlate with willingness to participate. Our survey found widespread willingness to enroll in a pregnancy-focused biobank and optimism that the results will yield significant benefits. ß

Why do participants enroll in population biobank studies? A systematic literature review

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“…Descriptive survey: survey administered orally to 93 women (63 participants; 30 nonparticipants) [41] Lemke et al…”

An exploratory survey of professionals on the use of stored tissue samples from minors for genetic research

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Donors Perceptions of Consent to and Feedback from Biobank Research: Time to Acknowledge Diversity?

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