Individual Data Sharing Consent
Uturn9 genetic testing’s mission is to help people access, understand and benefit from the human genome. One of the ways we do this is through our research program. You have previously agreed to participate in our research. We are now asking for an additional level of research participation and consent. We seek your permission to share your de-identified individual-level Genetic & Self-Reported Information with research collaborators outside of Uturn9 genetic testing. We collaborate with researchers outside Uturn9 genetic testing when we believe they can help us accelerate research and drive scientific discoveries. We work with them to study many different topics including genetic factors behind diseases and traits, connections among diseases and traits, human migration and population history, and how people react to their personal genetic information.
This consent document serves as a supplement to our full consent document. You can review the Uturn9 genetic testing Main Research Consent here.
1. What am I agreeing to if I consent?
Giving consent by checking the appropriate box below means that you agree to let Uturn9 genetic testing share your de-identified individual-level data with approved researchers outside of Uturn9 genetic testing. That is, you agree that we may share your Individual-level Genetic & Self-Reported Information. This includes:
- Your genetic data
- Information you enter into surveys, forms and other features with the Uturn9 genetic testing Research logo or
- Data you separately authorize us to import for research
- Your age and ethnicity
What does “de-identified” mean?
De-identified means that we strip the data of information that could directly identify you (such as name, date of birth, and address) and connect any study information you provide by using a random code (for example a study ID). Any Genetic & Self-Reported Information you allow us to share will be associated with that code, not with your name.
Managing our third party service providers.
Uturn9 genetic testing directly conducts the majority of data processing activities required to provide our Ancestry and Health + Ancestry Services to you. However, we do engage some third party service providers to assist in supporting these Services
What does “individual-level” mean?
Individual-level means the data are related to a single person. This is different from the Uturn9 genetic testing Main Research Consent you signed which allows us to share only information that has been combined or “pooled” with data from other research participants.
Allowing researchers to have access to individual-level data allows them to analyze the data more thoroughly, which may help them make more meaningful scientific discoveries.
Who are the research collaborators?
Research partners range from academic institutions and non-profit organizations to pharmaceutical and diagnostic companies. These research partners employ scientists who study many different health topics. Each partnership undergoes a rigorous screening process by a Uturn9 genetic testing scientific committee to ensure the goals and methods of the research are aligned with Uturn9 genetic testing’s mission and consistent with any of our associated research consent documents.
What can the research collaborators do with my data?
Our research partners must sign an agreement which describes what they can and can’t do with your data (for example, who can have access and what specific projects the data can be used for). We require strict data security measures which must be in place before we will release any data to them. The agreement also prohibits research collaborators from trying to identify you in any way or sharing your data outside the approved project.
We will not share your Genetic & Self-Reported Information for marketing purposes with our collaborators. You can learn more about how we share information for marketing purposes in our Privacy Statement.
Can I find out who my data is shared with?
For the most part, we won’t be able to contact you every time we would like to share your data. We may ask you to volunteer to provide information or take a survey on a specific topic or for a specific collaboration. In that case we will provide you with that information. Collaborations may result in scientific publications, which will be updated on a participant’s “publications dashboard” (this is a feature available under the “research” section of your account). If your data are used in a publication, it will only be published in summary form (combined data from many individuals), or using very limited, non-identifying information (such comments or feedback participants may consent to release).