Contributing Genomic, Health or Medical Data with LunaDNA Means Consenting to Share Your Data for Ethical Research
In this LunaDNA Consent, we refer to genomic data (that is, data about your genes, or DNA) and medical or health data (for example, medications, allergies, surveys, health records, information collected by integrated apps and devices) as Shared Data.
We refer to any personal information (for example, your name, contact information, payment information) as Personal Data. Personal Data does not include your Shared Data.
- The privacy and security of your Personal Data and Shared Data is of the utmost importance.
- We understand and respect the sensitive nature of the information you may provide to us, and we strive to be transparent in our collection, use and disclosure of this information and to ask for your explicit consent to share sensitive information with third parties.
- We are committed to providing a secure, private, and safe environment for our services.
- Your data is secured, de-identified, and never shared without your consent. To make meaningful discoveries that improve health and quality of life, researchers need millions of participants sharing genomic, medical and health data. To protect your privacy, we separate your Shared Data from your Personal Data. We refer to the separation of your Personal Data from your Shared Data as de-identifying your Shared Data. Your Shared Data is then combined, or aggregated, with the entire pool of de-identified Shared Data of our community, to create a searchable database to power research and discovery. LunaDNA or a contracted third party may perform population-level searches based on a pre-defined study design. We refer to these searches as queries. The results of a query will be a list of de-identified data file identification numbers of members whose Shared Data is a match for the query. Based on these results, a subset of aggregated, de-identified Shared Data is populated in a private, secured computer environment controlled by LunaDNA, which we refer to as a sandbox, in order to complete the analysis required by the study design. We will never provide any of your personally identifiable Personal Data to a researcher or anyone else without your explicit consent.
- Your data is owned by you. You may revoke your consent for LunaDNA to use your data at any time. At any time after you provide Shared Data or Personal Data to LunaDNA, you can decide to revoke your consent, purge some or all of your data, and even delete your account completely from our databases. If you revoke your consent or delete your account, your data will be permanently removed, or purged, from our database (subject to retaining an archival copy if, and for so long as, required by law), and this LunaDNA Consent relating to that data will automatically terminate. If you choose to purge some or all of your data, LunaDNA will immediately prevent that data from being found in any new queries for researchers. LunaDNA will also determine if your Shared Data is at that time available to any researchers in a sandbox. The process to remove your Shared Data from all relevant sandboxes may take up to 30 days. Once your Shared Data is removed from the sandbox(es), the researchers may be able to determine that a subset of the data previously available to them has been removed, and may be able to determine a specific data file identification number associated with data that was removed. This data file identification number does not include your name or other Personal Data. It is possible that a researcher will have created a record of your data file identification number or of aggregated data including your Shared Data that was available in the researcher’s sandbox area prior to your revocation of consent or purging of relevant Shared Data. Any research that has been completed or published using your Shared Data prior to you revoking your consent for LunaDNA to use that data or purging that data from our database will not be affected by your decision to purge data or revoke consent.
Please note that your continued consent is required for the ownership of any shares in LunaDNA issued to you in connection with the contribution of Shared Data. If you elect to revoke your consent for us to use Shared Data for which you were issued ownership shares in LunaDNA, LunaDNA will redeem (i.e., cancel) those shares, and may also elect to cancel any other shares that may have been issued to you, as set forth in Section 8.2 of LunaDNA’s operating agreement. We believe this is the best way to be fair to other members of LunaDNA who have not revoked access to their data.
- You can opt-in or opt-out to participate in studies by researchers. As a member, you may opt-in to learn about and then, if you so choose, participate in direct research studies. If you opt-in, a researcher or contracted third party may invite you to participate directly in a research study using an anonymous, automated process which does not grant the researcher or contracted third party access to any of your Personal Data. In other words, even if you opt-in to learning about direct research studies, you will remain anonymous to the interested researcher unless you agree to participate in the study. You can opt-in or opt-out of being contacted for such participation during your registration or at any later time in settings. You will be able to access these settings after completing the sign-up process. We have defaulted this selection to opt-out (or “no”) and if you choose to opt-in you will need to manually update this selection.
What studies will LunaDNA support?
Our manager, LunaPBC, intends to execute contracts with researchers to query the LunaDNA platform for research and discovery studies. These studies may focus on specific diseases or conditions (for example, diabetes, cardiovascular disease), wellness and longevity (that is, preventing disease and living longer lives), new drug discovery, or other matters. As noted above, researchers conducting these studies will gain access only to the de-identified aggregated Shared Data associated with results of their queries. They will not have direct access to your Personal Data without your explicit acceptance.
What can I do to contribute more to the LunaDNA community?
People’s health and environment changes over time. One of LunaDNA’s goals is to help and encourage you and other members to remain active in research by contributing more Shared Data over time. LunaPBC will inform LunaDNA members on ongoing studies powered by our members’ data, which will help you see the value created through member contributions towards improving health and quality of life. To further our community’s goal, we encourage you to regularly contribute Shared Data with LunaDNA and to check-in periodically to learn about how your Shared Data is making a difference.
Risks and Benefits to Consider
Sharing your data with LunaDNA has some risks that you should understand. We make significant efforts to protect against these risks. However, it’s still important for you to know about them.
By opting in to receive invitations to engage directly with researchers, you may directly or indirectly learn information about your genetic or lifestyle risk for certain diseases or conditions that you were unaware of previously. For example, a researcher may be recruiting participants for a breast cancer study. Even though the researcher’s interest in your data does not necessarily mean you have or are at increased risk for breast cancer, it may cause you to have concerns about whether or not they selected your data based on something they know about you and breast cancer. You will need to decide if this is information you are interested in potentially learning or thinking about yourself. Some of this information could also be relevant to your family because people with the same parents and ancestors may share genetic risk factors (that is, changes in or attributes of your DNA that may cause a disease or condition either now or in the future). If you do not want to learn this type of information, you should opt-out of receiving invitations from LunaDNA to engage directly with research partners in your profile page.
Changes to This LunaDNA Consent
LunaDNA cannot foresee all of the potential applications of the data we collect, particularly in a rapidly developing field such as genomics and medical research. Therefore, except as indicated below, LunaDNA reserves the right to update this LunaDNA Consent from time-to-time. Before implementing any changes, LunaDNA will first notify you of the proposed changes at least 30 days before their effectiveness to provide you with the opportunity to revoke this LunaDNA consent, purge some or all of your data, or even delete your account completely from our databases if you do not want your data to be bound by the revised terms. If you do not take one of those actions after receiving notice of those proposed changes, you agree that you will be bound by the new terms when they become effective. None of the changes to this LunaDNA Consent may, without your explicit consent, adversely affect your basic right to revoke this LunaDNA consent, to purge some or all of your data, or to delete your account completely from our databases.
You are responsible for ensuring that your contact information (i.e., email listed on your profile page) remains up to date and valid.