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Genetic research participation in a young adult community sample

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Abstract

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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Acknowledgments

This work was supported by several National Institute of Health grants over the span of the prospective study: National Institute of Mental Health MH71395 and National Institute on Drug Abuse DA09897, DA04392, and DA019805.

Conflict of interest

Carla Storr, Flora Or, William Eaton, and Nicholas Ialongo declare that they have no conflict of interest. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all participants included in the study.

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Authors and Affiliations

  1. Department of Family and Community Health, School of Nursing, University of Maryland, Baltimore, 655 West Lombard Street Rm 645C, Baltimore, MD, 21201, USA

    Carla L. Storr

  2. Department of Mental Health, Bloomberg School of Public Health, Johns Hopkins University, 624 North Broadway 8th Floor, Baltimore, MD, 21205, USA

    Carla L. Storr, William W. Eaton & Nicholas Ialongo

  3. Department of Social Behavioral Sciences, Harvard School of Public Health, Harvard University, 677 Huntington Avenue, Boston, MA, 02115, USA

    Flora Or

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  1. Carla L. Storr
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Correspondence to Carla L. Storr.

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Storr, C.L., Or, F., Eaton, W.W. et al. Genetic research participation in a young adult community sample. J Community Genet 5, 363–375 (2014). https://doi.org/10.1007/s12687-014-0191-3

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