Qualitative assessment of study materials and communication strategies used in studies that include DNA collection

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  • The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

  • How to Cite this Article: Jenkins MM, Reed-Gross E, Barfield WD, Prue CE, Gallagher ML, Rasmussen SA, Honein MA. 2011. Qualitative assessment of study materials and communication strategies used in studies that include DNA collection. Am J Med Genet Part A 155: 2721–2731.

Abstract

To understand motivations and barriers to participation in studies that include DNA collection, focus group discussions were held with mothers who had participated in a case–control study of birth defects. Recruited mothers had completed an interview and had received a mailed kit containing cytobrushes to collect buccal cells for DNA from herself, her infant, and her infant's father. Six moderator-led focus groups were attended by a total of 38 women residing in Atlanta, Georgia. Focus groups were segmented by DNA collection status (biologics participants or nonparticipants), infant case–control status, infant birthweight, and maternal race and ethnicity. This report assesses maternal attitudes toward study materials and communication strategies. Across groups, respondents expressed concern about how their contact information was obtained. Study materials were described as clear and professional by most women, although some respondents reported confusion about disclosure of individual genetic results. Respondents generally reported that monetary incentives were not a motivation to participate, but increased perceived study legitimacy. Biologics nonparticipants expressed concerns about kit component sterility; government involvement; and DNA sample use, storage, and disposal. Respondents suggested that investigators provide feedback on whether sample collection was performed correctly and provide materials targeted to fathers to help alleviate paternal skepticism. Participation in DNA collection might be improved by strengthening study materials and communication strategies. Published 2011. This article is a U.S. Government work and is in the public domain in the USA.

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