Individuals participating in biobanks and other large research projects are increasingly asked to provide broad consent for open-ended research use and widespread sharing of their biosamples and data. We assessed willingness to participate in a biobank using different consent and data sharing models, hypothesizing that willingness would be higher under more restrictive scenarios. Perceived benefits, concerns, and information needs were also assessed. In this experimental survey, individuals from 11 US healthcare systems in the Electronic Medical Records and Genomics (eMERGE) Network were randomly allocated to one of three hypothetical scenarios: tiered consent and controlled data sharing; broad consent and controlled data sharing; or broad consent and open data sharing. Of 82,328 eligible individuals, exactly 13,000 (15.8%) completed the survey. Overall, 66% (95% CI: 63%-69%) of population-weighted respondents stated they would be willing to participate in a biobank; willingness and attitudes did not differ between respondents in the three scenarios. Willingness to participate was associated with self-identified white race, higher educational attainment, lower religiosity, perceiving more research benefits, fewer concerns, and fewer information needs. Most (86%, CI: 84%-87%) participants would want to know what would happen if a researcher misused their health information; fewer (51%, CI: 47%-55%) would worry about their privacy. The concern that the use of broad consent and open data sharing could adversely affect participant recruitment is not supported by these findings. Addressing potential participants' concerns and information needs and building trust and relationships with communities may increase acceptance of broad consent and wide data sharing in biobank research.

BackgroundThe advent of patient-centered care challenges policy makers, health care administrators, clinicians, and patient advocates to understand the factors that contribute to effective patient activation. Improved understanding of how patients think about and define their health is needed to more effectively “activate” patients, and to nurture and support patients’ efforts to improve their health. Researchers have intimated for over 25 years that rural populations approach health in a distinct fashion that may differ from their non-rural counterparts.MethodsWe conducted a systematic review of the literature to assess the extent and strength of evidence for rural definition of health. Studies were eligible for inclusion if they were published in English, reported on original research and presented findings or commentary relevant to rural definition of health, were published over the last 40 years, and were based on observations of rural U.S., Canadian, or Australian populations. Two reviewers were assigned to each selected article and blinded to the other reviewer’s comments. For discordant reviews, a third blinded review was performed.ResultsOf the 125 published articles identified from the literature, 34 included commentary or findings relevant to a rural definition of health. Of these studies, 6 included an urban comparison group. Few studies compared rural and urban definitions of health directly. Findings relevant to rural definition of health covered a broad range; however, good health was commonly characterized as being able to work, reciprocate in social relationships, and maintain independence.This review largely confirmed many general characteristics on rural views of health, but also documented the extensive methodological limitations, both in terms of quantity and quality, of studies that empirically compare rural vs. urban samples. Most notably, the evidence base in this area is weakened by the frequent absence of parallel comparison groups and standardized assessment tools.ConclusionsTo engage and activate rural patients in their own healthcare, a better understanding of the health beliefs in rural populations is needed. This review suggests that rural residents may indeed hold distinct views on how to define health, but more rigorous studies are needed to confirm these findings.Electronic supplementary materialThe online version of this article (doi:10.1186/s12889-015-1658-9) contains supplementary material, which is available to authorized users.

This study documents outcomes, including student career choices, of the North Dakota Institutional Development Award Networks of Biomedical Research Excellence program that provides 10-week, summer undergraduate research experiences at the University of North Dakota School of Medicine and Health Sciences. Program evaluation initiated in 2008 and, to date, 335 students have completed the program. Of the 335, 214 students have successfully completed their bachelor’s degree, 102 are still undergraduates, and 19 either did not complete a bachelor’s degree or were lost to follow-up. The program was able to track 200 of the 214 students for education and career choices following graduation. Of these 200, 76% continued in postgraduate health-related education; 34.0% and 20.5% are enrolled in or have completed MD or PhD programs, respectively. Other postbaccalaureate pursuits included careers in pharmacy, optometry, dentistry, public health, physical therapy, nurse practitioner, and physician’s assistant, accounting for an additional 21.5%. Most students electing to stop formal education at the bachelor’s degree also entered fields related to health care or science, technology, engineering, and mathematics (19.5%), with only a small number of the 200 students tracked going into service or industries which lacked an association with the health-care workforce (4.5%). These student outcomes support the concept that participation in summer undergraduate research boosts efforts to populate the pipeline of future researchers and health professionals. It is also an indication that future researchers and health professionals will be able to communicate the value of research in their professional and social associations. The report also discusses best practices and issues in summer undergraduate research for students originating from rural environments.

Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data sharing scenarios; and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of three consent and data sharing scenarios. Results: 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5,737 respondents were parents of minor children. Overall, 55% (95% CI: 50-59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate, but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public healthcare insurance, and higher scores on a scale of religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks.