I don't live in the U.S. Can I still participate?
Unfortunately, no. For now we are only allowed to enroll participants who are 18 years or older and live permanently or temporarily in the U.S. with a valid US mailing address.
How do I consent to participate in the study?
For the online surveys, you can consent online. Please use the "Next" button to click through the pages of the consent form. On the last page check the little box at the bottom in you are 18 years of age or older and live currently in the US. After clicking "Accept", you will have consented and be able to continue.
How can I get a kit for my children?
To join, participants must be 18 years or older and living in the US. In the Genes for Good app through the participants own Facebook account, we also ask that they complete a minimum number of surveys before receiving a spit kit.
I'm using a fake name for my Facebook account. Do I have to use my real name to participate in Genes for Good?
When you choose to submit a saliva sample, we will sent you a hardcopy consent form for signature. This signature must be your legal signature. In order to process your sample and avoid any delays, the consent form must match the name in our database. If you are using a fake name for your Facebook account, you may update your Genes for Good name without affecting your Facebook name. You can do this in the Genes for Good app under Your Account > Profile. Your name, along with other information you enter in the Genes for Good app, is not shared with Facebook.
Can I stop participating in the surveys if I don't want to continue?
You can stop participating at any time. You can stop answering surveys or you can delete the App from you Facebook Account. Please note that if you delete the App we will not be able to notify you about new surveys or results. If you not only want to stop but withdraw from the study, please see the question below.
How can I withdraw from the study?
You can withdraw from Genes for Good at any time. You can stop participating in the study by using the withdrawal link in the App which can be found under 'Your Account' in the upper right-hand corner. Withdrawing is also possible by contacting us. Only you can remove the Genes for Good App from you Facebook account, which you can do through your Facebook Account settings page.
Will you keep any information after I withdraw?
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After withdrawing we will keep your survey responses and delete your name and unique Facebook ID from our database. We will also remove your addresses (IP address and physical address) and phone number (if you provided them to us). We will keep your age, sex, and zip code, and use this limited data for future research; this also includes your DNA, if you provided a sample.
What are the risks of participating?
For participation in online surveys only: There is only minimal risk in participating in the online surveys. The only direct risk involves a breach in data security. It is possible, though we consider it very unlikely, that our web-based server and standalone data server security would be jointly compromised, in which case identifiable responses to health-and behavior-related questions could be discovered.
For donating a saliva sample: If you participate in genetic research and submit a saliva sample, a breach in data security is again one direct risk. We have taken important steps to reduce this risk, including the utilization of separate independent servers to host the web application, your responses, and genetic data. *If the genetic information is used in some way to identify you, it is possible that you could suffer psychological or emotional harm, or other unforeseen consequences.* The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects individuals from genetic discrimination in health insurance and employment. You can find more about GINA here.
We will provide you with information about your ancestry based on DNA analysis. The primary anticipated significant risk associated with receipt of this information is discovery or suspicion of nonpaternity and/or secret adoption. That is, discovering one's ancestry is inconsistent with what you know about the ancestry of your supposedly biological parents. This is in fact a risk of any genetic test, and we provide education about this risk during the informed consent. If you remain concerned about the implications of the test for your family relationships, we encourage you to contact a genetic counselor.
I do not want to participate through Facebook, is there an alternative besides the Facebook App?
Unfortunately right now we do not have a way to participate outside of Facebook. We eventually plan to implement an alternate login through Google.