Research Consent Form
1. What information will be used or shared if I consent?
- Your Genetic Information
- Your saliva and/or blood sample
- Information you enter into surveys, forms and other features (including but not limited to your sex, age, ethnicity, etc.)
- Other information or data you provide from time to time and authorize us to use and/or share for research purposes
When we share your Personal Information for research purpose, we will de-identify such information by, for example, assigning a random ID. “De-identified information” means information that cannot reasonably identify, relate to, describe, be capable of being associated with, or be linked, directly or indirectly, to you.
2. What is Elysium Research?
We may engage in both internal and external research to develop new tests and products, develop new applications and features of existing products, improve our products and services, validate technologies, or improve existing technologies or processes.
Internal Research: Internal Research refers to the research conducted by Elysium Health or its affiliate internally, with or without the help of our service provider or contractor (e.g. Laboratory). As an example of internal research, a customer that opts-in may receive a survey with various questions about demographics and lifestyle, with the goal of potentially looking for correlations of these traits with their DNA methylation patterns, correlations that may eventually lead to the development of new applications and features on the Index platform. By agreeing to participate in our Internal Research, you consent to our use and share with our own service provider or contractor the individual-level of your de-identified Personal Information to conduct such Internal Research and in relevant publications.
External Research: External Research refers to the research conducted by Elysium Health or its affiliate in collaboration with its outside research collaborators or partners on select research projects. As an example of external research, the above outlined correlations between survey responses and DNA methylation patterns may lead to new findings in the academic and/or medical communities. By agreeing to participate in our External Research, you consent to the use and share with our outside research collaborators, service provider or contractor the individual-level of your de-identified Personal Information to conduct such External Research and the use of your individual-level de-identified Personal Information in relevant publications.
3. Who are the outside research collaborators?
Our third party research collaborators include universities, hospitals, health systems, government institutions, non-profit organizations, or private companies. When we share your de-identified Personal Information with these collaborators, we will make sure that they are contractually obliged to safeguard such information according to the law. These research collaborators will also be contractually prohibited from trying to re-identify you in any way or sharing your data outside the approved research.
4. Can I change my mind?
Yes, you may withdraw your consent to this Research Consent Form at any time by calling (888) 220-6436 or emailing [email protected]. Specifically, you may either: (i) withdraw the disclosure of your Personal Information to third party for external research purposes but still consent to our collection, use and process your Personal Information for our own internal research; or (ii) withdraw the collection, use, process and disclosure of your Personal Information for our entire Elysium Research (i.e. both internal and external researches).
Please keep in mind that your withdrawal will not affect the lawfulness of our collection, use, processing, and disclosure based on consent before your withdrawal (e.g. your information will not be removed from ongoing or completed research studies which started before we receive your request to delete your Personal Information). The saliva sample, Genetic Information and/or other Personal Information that you have previously provided and for which you have given consent to use in our research cannot be removed from completed studies that use that information. Your data will not be included in studies and research that start more than 30 days after your account is closed (it may take up to 30 days to withdraw your information after your account is closed).
Choosing not to give consent or withdrawing your consent to this Research Consent Form will not affect your use the Elysium Test you already purchased.