What is this study about?
- We want to know what causes people to drink alcohol, including things that affect how much alcohol people drink (if they choose to drink at all). In this study, we are looking at things like genes, alcohol in the community, and family and friends’ drinking.
- Alcohol problems affect many families all across our country. There is still a lot we do not understand about how and why alcohol problems happen, and this research could help answer some important questions.
- For more details about the study, please click here for the English version (PDF) or click here for the Spanish version (PDF).
What does the study involve?
- Speaking with us for a brief phone survey
- Receiving a packet with your saliva kit & more information
- Following the kit instructions: Spit, Seal, Shake, Send
- To see a video about how to collect your sample, click here
- Mailing your sample back to the university (using the prepaid envelope)
- Receiving our thanks and your incentive!
Who is conducting this study?
The Virginia Commonwealth University (VCU) School of Social Work is leading this study. VCU is a public research university in Richmond, VA. To learn more about VCU, please visit the School’s website.
The ENGAGE-D study is a partnership with VCU Virginia Institute for Psychiatric and Behavioral Genetics and PHI‘s Alcohol Research Group.
ICF is the independent health research organization hired to conduct the phone survey and help with mailings and incentives.
Why are you asking for a saliva sample?
The biology of the human body is very similar for all people. However, we all inherit slightly different traits from our birth parents, like the color of our eyes. These differences are linked to our genes, which tell our body how to develop and function. Our saliva contains DNA from cells in our mouth, and DNA is the substance that contains our genes. While we all carry the same set of genes, there are small, normally occurring differences in genes that may be related to how much alcohol people drink. This is why it is important that many different people are included in this research, including men and women, as well as drinkers and non-drinkers.
How do you collect the saliva sample?
We want this to be very easy for you. We will send you a saliva collection kit. The kit has instructions (English version | Spanish version), pictures, and the link to an online YouTube video showing how to give your sample. You can also view the video below. This includes spitting in a tube and sealing it. Then, you just mail the tube back to the VCU Genetics Lab using the prepaid envelope included in your packet. To thank you for your time and effort to collect and mail the sample, we will send your incentive when we receive your saliva sample.
How will my information be protected?
Some people have concerns about how their information will be used. We have put a number of steps in place to protect your privacy.
- We will keep all information in files on secure and password-protected computers.
- We will label your DNA sample and survey answers with a code number, not with your name or any other identifying information. This is so we can keep your name separated from your sample and from your survey answers.
- Your DNA sample will be stored in a locked freezer at the VCU Genetics Lab. The people who work at the lab will never have access to your name or address.
- We will group your information with data from everyone else who takes part in the study. We are not focused on individuals, so we will only look at the information we get from everyone grouped together.
- Your name will never appear on any reports, papers, or presentations connected with this study.
- We are in the process of obtaining a Certificate of Confidentiality from the Federal Government as another precaution. This Certificate’s protection applies to your DNA sample and survey data. The Certificate protects us from having to reveal your identity or the information you give us, even under court order. Under certain circumstances, you could give us written permission to release this information, however. This Certificate will help us protect the confidentiality of your data. You can read additional details about the protections and limitations of the Certificate of Confidentiality here.
What will happen to my saliva sample?
- The people who work in the lab will use some of your saliva for DNA testing; the rest will be stored in a locked freezer. We will save the information about your genes as data in electronic files on secure computers that are protected by passwords known only by a few qualified and approved study workers (such as the researchers at VCU School of Social Work).
- Because advances in genetics often require DNA from tens or hundreds of thousands of individuals, we may share your data with large repositories (a repository is a database of information) for sharing with the research community. If we do this, we will not share any identifying information about you (like your name, address, or date of birth). Only qualified researchers, who have applied for access and received approval, would be able to use the repository and work with your de-identified data (along with the data from everyone else). This type of future study may provide additional information that will be helpful in understanding alcohol use and health.
Will I get any feedback from the study?
The technology we use is for genetic research only. It is not the same as what is used for genetic testing you would receive at a hospital or doctor’s office. We know that alcohol problems are not caused by any single gene, so we are unlikely to identify whether your genes increase or decrease your risk of having any diseases or genetic disorders. Because of this and because your data will be de-identified to protect your privacy, we will not provide any results of genetic testing to you. Our hope is that this study will allow us to better understand how normally occurring differences in people’s DNA contribute to differences in alcohol use. We do think it is important that you have a way to stay connected to the study, so we have designed this website as a way for us to share information about our study findings with you.
What’s in it for me?
There is no guarantee of direct benefit to you or the other people who take part in this study. However, people take part in research for many reasons. These might include wanting to help to move science forward or because someone close to them is affected by a particular disease or problem, like alcohol use. For your time and effort to participate in this study, you will receive $5 after completing a phone survey and agreeing to receive a saliva collection kit, and a $20 Amazon.com gift code after your saliva sample is received.
We are very grateful for the contribution you are making to this research. We hope you also feel good about the important role you are playing.
If you have questions or need help returning your sample, please contact us:
Toll-free: 1-844-604-4164
or email us: engaged@icfsurveysupport.com