We are asking for your permission to remove your personally identifiable information from the data and samples we collect about you in the Arivale program to include in the future research database or biobank.
Your data may also help many others. Arivale is assembling a unique, de-identified data set to help researchers across the world develop a deeper understanding of what makes human beings thrive and hopefully deliver more effective solutions to advance human vitality and longevity. This separate database, or biobank, contains data information and stored specimens such as blood, DNA and plasma that may be used in future research. Data and storage specimens are collected from program participants such as you, at the same time we are collecting blood for your regular program blood draws. The samples may be used to learn about the body and to improve health. The specimens will be stored in a repository run by an independent organization. We will keep the de-identified specimen indefinitely. If we complete our research projects and or no longer need to keep the specimens, we will destroy them. We will also destroy the specimens if we lose our funding for storage.
We will remove your personally identifiable information from the data and or samples we collect about you to include in the future research database (i.e., to “de-identify” or remove direct and indirect identifiers about you). “De-identified” means the database provides contextual information – gender, age, and ethnicity. But your name, address, or other information that could personally identify you are never included. The data that you permit us to de-identify and share will be separated completely from our other systems that contain your identifiable health information for your health coaching that we use with you on your wellness journey program. When the results of any possible research from de-identified data / specimens are published or discussed in conferences, no information will ever be included that would reveal your identity.
Your authorization (below) to Arivale for use of your information in de-identified form for future research can do an amazing thing for health sciences researchers across the globe by allowing us to share the de-identified aggregated database of Arivale customers. “Aggregated” means that everybody who authorizes us gets placed in a database. By agreeing to contribute to research the de-identified data will be made available to researchers studying human wellness and some diseases. Your participation is voluntary. Please take as much time as you need to read this.
The specimens will be de-identified and may be used to develop new medical products. You will not own these samples, receive any payment for your contribution of your de-identified data toward this data collection for research, wellness optimization, and potential disease prevention purposes. If any of the research leads to new discoveries including but not limited to: tests, drugs, or other commercial products, you will not share in any profits.
At any time, you may ask to have your sample destroyed if your request is prior to your sample being de-identified. You can still participate in the Arivale program whether or not you authorize future research below. We do not retain identifiable genetic data or identifiable samples for other purposes. Arivale will retain the genetic data that provides insights for your program use. Any de-identified specimens will be stored in a biobank repository run by an independent organization.
Put simply, we do not retain identifiable genetic data or identifiable samples for other purposes but may, with your permission, de-identify the data and specimens and retain them for future research.
You can choose whether to contribute your data in a de-identified form to Arivale’s database or not. If you decide to do so, you may withdraw at any time without consequences of any kind. When you authorize Arivale to your data for future research, you are doing so on a de-identified basis. Your name, contact information, and other information that could personally identify you are not shared, and your data are only used in aggregate with that of others who have also chosen to do so.
Potential Risks Related to De-Identified Data
There are no anticipated risks or discomforts for you in participating in future de-identified research. With respect to the de-identified data that you are contributing, these include genetic and other biological and lifestyle information that is collected from you during the Arivale program, together with any health and wellness information and recommendations developed from such information. Specifically, the data may include samples of your blood, stool, saliva and possibly other tissues for analysis of genetic and other biological information. They may also include de-identified health-related factors such as activities, environment, diet, medical or health conditions, health behaviors, mental health or stress-related challenges, and other factors, which you and other clients have provided or will provide through our application form, surveys, or through other communications.
As feasible and appropriate, all information contributed to the database will be handled securely including, for electronic delivery, through encryption and password protection. However, if such unauthorized use or release occurs, it could be harmful to you. For example, while certain laws protect a person from having his/her genetic data used against them as it relates to employment or healthcare insurance, it is important for you to understand that there is the possibility – however unlikely – that your genetic data could be linked back to you.
I understand and voluntarily authorize:
- Arivale to retain and to use my de-identified data and de-identified biobanked samples of my blood and DNA for research, development, and or educational purpose;
- I will not have any benefits to claims on possible future discoveries, products or intellectual property;
- I may opt out or revoke my authorization, in writing, at any time.
- However, my decisions only apply to future disclosures of the data starting 30 days after you submit your request in writing to firstname.lastname@example.org and will not apply to third parties that may have already obtained any files including your de-identified data from the database. We will not be able to give back samples that we already have shared, but if you cancel, we will stop sharing your samples and information. If you cancel, we will destroy any unused identifiable samples;
- The uses and disclosures of PHI made before revoking authorization are not affected and we cannot take back any disclosures or data de-identified we may have already made with your earlier authorization;
- Arivale may keep the de-identified specimen samples indefinitely; and
- Allow my leftover de-identified biological samples and limited health information to be used for the above stated purposes.