The study is completely voluntary. To make this study a success, we hope as many students as possible will participate as we want our study to be representative of VCU's diverse student body. But, if you choose not to participate, there will be no negative repercussions. The university will not know if you have participated or not nor what your responses to any of the questions are if you do participate. Your participation will not affect your class work.
In the state of Virginia, students who are younger than 18 years of age are considered minors. There are a set of rules in the research regulations that protect minors. One of these protections is that minors cannot give permission to be in research without their parent's authorization (consent). Since it may be difficult for some students to get their parents' permission and most of the freshmen are not minors (96% are 18 years or older), the project is only enrolling students who are 18 or older. An invitation to participate will be sent by email to students once they turn 18. If a student turns 18 during an ongoing data collection, an invitation will be sent out for that ongoing collection. Otherwise, the student will be invited to participate in future waves of data collection that take place after the student's 18th birthday during their freshman year.
Yes, we hope as many students as possible will participate as we want our study to be representative of VCU's diverse student body. Locations for payment pick-up/DNA collection are handicap accessible, and all information is available in alternate formats upon request by contacting the study representative at (804) 628-4645 or via email at firstname.lastname@example.org.
A random ID number is generated for all Spit for Science participants. Research assistants on the project have access to the names of the individuals who have completed the survey and their random ID numbers, but they do not have access to any of the survey responses. This enables them to give out payments to participants who have completed the survey. It also allows them to label the DNA samples for those who wish to participate in that part of the project with the random ID numbers. These DNA samples are then transported with the random IDs, but no names, to the research laboratory at the Virginia Institute for Psychiatric and Behavioral Genetics at VCU.
In this way, the researchers who are working with the DNA don't have access to the names of any of the participants, and the names are never associated with the DNA samples. Similarly, the investigators who are analyzing the data only get the survey responses with the random IDs attached to them. Names and any other individually identifying information are removed before giving the data to the researchers for analysis. This enables the researchers who are doing the analyses to connect the survey information with the DNA information through the random IDs while NEVER having access to any names of participants. Further, the DNA information is kept on a separate computer server, in a separate building, from the survey responses. This provides another layer of separation between the DNA and the names of anyone who participated in the project. All data files are kept on secure, password protected servers with many layers of protection built in.
No. The project has two separate components: the online survey and the DNA collection component. You can complete the on-line survey and choose not to give a DNA sample. You will receive $10 for each component. If you fill out the survey only, you will get $10. If you fill out the survey and give a DNA sample, you will get $20 total. Only students who complete the survey are eligible to give a DNA sample. You cannot choose to participate in the DNA component but not the online survey.
Payment can be picked up at the University Commons Kiosk, 907 Floyd Avenue, Monday through Friday between 12:30-4:30PM
Please e-mail the research team at email@example.com, and they can reissue an invitation to participate as long as the data collection is still ongoing (and/or add you back to the mailing list for future correspondence).
Yes! Participants can take the initial Spit for Science survey only once; however, since Spit for Science is investigating the relationship between environmental and genetic factors, it is helpful to get a long-term view of how things are changing over time. Though your genetic code does not change, your environment is in constant flux! So, while we only need participants to spit once, we will invite previous Spit for Science participants to follow-up with another survey each Spring semester. That way, we can see how friends, family, and other factors that contribute to your environment might change over time.
No. UC Berkeley's "Bring your Genes to Cal" program gave their incoming freshmen the option to have their DNA tested for three particular characteristics: their metabolism of folate, tolerance of lactose, and metabolism of alcohol. The biggest difference between the Berkeley study and the Spit for Science project at VCU is that Berkeley was providing individual feedback to students about their genes. In the end, the State of California ruled that providing individual genetic information was considered a medical test, which is not allowed except in a clinical setting, and the project was stopped. In the Spit for Science project, we will not be providing any individual feedback to students. The Berkeley project was intended purely to stimulate discussion among the students; it was not a scientific study.
In contrast, Spit for Science: the VCU Student Survey invites students to be a part of a study that aims to understand how genetic and environmental factors contribute to why some people are more likely to develop problems associated with the use of alcohol, the use of other substances and emotional health. We also intend to use that information to feedback into programming at VCU in a way that will benefit our students. Like the Berkeley project, we have the goal of educating students and enhancing awareness about the importance of genetics in health-related outcomes and engaging students in thoughtful discussion about the role of genetics in the future of medicine. However, we are going about this in a different way – by giving students the opportunity to be part of a research project in a cutting edge research area in which faculty at VCU have deep expertise instead of giving individual genetic feedback.
A genome-wide associate study (GWAS) is an examination of all or most of the genes (the genome) of different individuals to see how much the genes vary from individual to individual. Different variations are then associated with different traits. Scientists across the National Institutes of Health (NIH) are using this technique to study all kinds of outcomes, such as blood pressure or weight, or the presence or absence of a disease or condition. In the Spit for Science project, researchers at VCU are interested in how variation in DNA influences the use of alcohol, the use of other substances, and emotional health. For example, this will allow us to understand which genetic variants influence how frequently people drink or why some people are more likely to get depressed than others when they experience a stressful life event.
In human GWAS studies, thousands of individuals, or often tens of thousands of individuals, are usually studied. The reason that we need so many participants in these studies is that it is believed that many genes — maybe hundreds or even thousands - are involved in complex behavioral outcomes like alcohol problems. And, each of these genes is expected to only have a very small effect on its own. This is why we need to study so many people in order to have sufficient power to detect such small individual genetic effects. Because it would be virtually impossible for any one researcher to collect a sample this large, the NIH asks scientists to work together and deposit their samples into a national database that the NIH oversees. Scientists deposit de-identified samples – this means the samples are labeled with code numbers that contain no identifying information about the people who gave them. The goal of this is to create a national resource to help advance science and medicine.
It is called dbGaP (the database of Genotype and Phenotype). dbGaP is a database developed by the National Center for Biotechnology Information (a division of the National Library of Medicine) to archive and distribute the results of studies that have investigated the interaction of genotypes (genetic) and phenotypes (observable traits).
Datasets are stored in the NIH GWAS data repository under strict security provisions, including multiple firewalls, separate servers, and data encryption protocols. Investigators and their sponsoring institutions seeking access to data in the NIH GWAS data repository must submit a data access request that specifies the data to which access is sought, the planned research use, and agree to the terms of access set forth in the Data Use Certification (DUC). Investigators are approved by a Data Access Committee (DAC) for access to specific datasets for a specific use(s). Data can only be accessed through the NIH login process. In addition, the DUC includes a provision that approved users and their institutions agree to store the requested data securely and to not share the requested data with third parties.