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

Jenkins, Mary M.; Reed-Gross, Erika; Barfield, Wanda D.; Prue, Christine E.; Gallagher, Margaret; Rasmussen, Sonja A.; Honein, Margaret A.

doi:10.1002/ajmg.a.34263

Cited by 10 publications

(25 citation statements)

References 24 publications

(29 reference statements)

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“…Literature on this topic confirms the findings of the present paper. Maternal attitudes toward DNA collection in epidemiological studies was assessed through focus groups [12,13]. Distrust of the government, fathers’ skepticism, and insufficient information about the use, storage, and disposal of specimens were reported as primary barriers to participation in DNA collection.…”

Section: Discussionmentioning

confidence: 99%

Analysis of motivations that lead women to participate (or not) in a newborn cohort study

et al. 2013

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BackgroundLittle is known about reasons that influence parents’ decision to participate in studies enrolling healthy children. The aim of this observational study was to verify the reasons that lead pregnant women to give their consent or to refuse participation to a newborn cohort study with a long follow up time.MethodsTo prospectively investigate the reasons that lead women to participate, to refuse the participation or to withdraw from a newborn cohort study, three different questionnaires were administered to pregnant women contacted or enrolled in the Phime cohort study, carried out in an Italian Hospital from 2007 to 2010.ResultsPhime study participation was refused by 304 women and 145 withdrew their consent during the follow up. All these women filled in the related questionnaires. Within 632 mothers in follow up at 18 months, 430 filled in the questionnaire on motivation to participate: 97% stated that the main reason was to contribute to research; 96% and 90% stated that they wanted to benefit future babies’ and mothers’ health. Ninety-six percent of women would appreciate to know the results of analysis carried out on biological samples collected and of the overall study results. One third of the mothers (37%) wanted to be involved in the definition of future similar studies, bringing their experience and their views. Within the 304 women who refused participation, 56% stated that the study was too demanding, 26% was not interested in participating and 18% was concerned about the need to collect biological samples and to be submitted to neurocognitive tests. Fifty-two percent of 145 women who withdrew after enrollment stated that the study was too demanding (52%), and 6% was concerned about the biological samples collection.ConclusionsThe altruistic reason appears to be the main reported by women to decide to participate in a newborn cohort study. The fact that the study was too demanding and the need to collect biological samples are important reasons that lead women to refuse participation or to withdraw from the study. An adequate communication on these aspects should minimize difficulties in enrolment and losses to follow up.

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Section: Discussionmentioning

confidence: 99%

Analysis of motivations that lead women to participate (or not) in a newborn cohort study

et al. 2013

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“…To assess women's attitudes toward participation in buccal cell collection, six focus group discussions were held in September 2007 with women residing in metropolitan Atlanta, Georgia who had completed the NBDPS interview and either did or did not complete buccal cell collection (Jenkins and others, 2009; Jenkins and others, 2011). Four of the focus groups were comprised solely of non-Hispanic black women because they were the racial-ethnic group with the lowest participation.…”

Section: Participation In Buccal Cell Collectionmentioning

confidence: 99%

The national birth defects prevention study: A review of the methods

Reefhuis

Gilboa

Anderka

et al. 2015

Birth Defects Research

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312

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Background The National Birth Defects Prevention Study (NBDPS) is a large population-based multi-center case-control study of major birth defects in the United States. Methods Data collection took place from 1998 through 2013 on pregnancies ending between October 1997 and December 2011. Cases could be live born, stillborn or induced terminations, and were identified from birth defects surveillance programs in Arkansas, California, Georgia, Iowa, Massachusetts, New Jersey, New York, North Carolina, Texas and Utah. Controls were live born infants without major birth defects identified from the same geographical regions and time periods as cases via either vital records or birth hospitals. Computer-assisted telephone interviews were completed with women between 6 weeks and 24 months after the estimated date of delivery. After completion of interviews, families received buccal cell collection kits for the mother, father and infant (if living). Results There were 47,832 eligible cases and 18,272 eligible controls. Among these, 32,187 (67%) and 11,814 (65%) respectively, provided interview information about their pregnancies. Buccal cell collection kits with a cytobrush for at least one family member were returned by 19,065 case and 6,211 control families (65% and 59% of those who were sent a kit). More than 500 projects have been proposed by the collaborators and over 200 manuscripts published using data from the NBDPS through December 2014. Conclusion The NBDPS has made substantial contributions to the field of birth defects epidemiology through its rigorous design, including case classification, detailed questionnaire and specimen collection, large study population, and collaborative activities across Centers.

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“…Many reports offer suggestions as to what people require in order to make a decision to donate a DNA sample (Jenkins et al 2011;Streicher et al 2011). Ethical oversight, language preference, clarity of communications (Kozlowski et al 2002), beliefs about benefits of participation (Halbert et al 2006), and trust between participants and investigators (Corbie-Smith et al 2002) should not be ignored.…”

Section: Introductionmentioning

confidence: 99%

Genetic research participation in a young adult community sample

Storr

Eaton

et al. 2014

J Community Genet

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Opposed to large nationally sponsored health initiatives or biobanks, little is known about gathering genetic samples from young adults participating in academic community-based epidemiologic studies of mental health and substance use, especially samples with a large number of minority participants. This study describes our experience of establishing a genetic arm within a longitudinal study of a cohort of young adults (mean age 29, 75 % African American, 58 % female). In total, 75 % of those interviewed in the most recent wave donated a DNA sample (31.6 % blood and 68.4 % saliva) and over 90 % provided consent for storage and sharing. Current smokers were more likely to donate a sample than nonsmokers (adjusted odds ratio (aOR)=1.59, 95 % confidence interval (CI)=1.14, 2.22). The odds of obtaining a saliva sample were increased for those who were former cannabis smokers and who drank more regularly, but decreased among participants with less education and a history with drug use. Fewer minorities (aOR=0.37, 95 % CI= 0.18, 0.75; p=0.006) and cannabis users (aOR=0.46, 95 % CI =0.27, 0.77) consented to sharing their sample with other investigators. Findings also illustrate there are many study parameters that are important in planning biologic collection efforts. Building strong rapport and trust with subjects, minimizing the burden involved by the respondent to obtain a biological sample, offering a choice to provide blood or saliva, and offering an incentive will increase the likelihood of obtaining a sample and, importantly, increase the opportunity to store and share the sample for the future.

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

Cited by 10 publications

References 24 publications

Analysis of motivations that lead women to participate (or not) in a newborn cohort study

Analysis of motivations that lead women to participate (or not) in a newborn cohort study

The national birth defects prevention study: A review of the methods

Genetic research participation in a young adult community sample

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