The University of California San Diego
The Microsetta Initiative
Statement of Privacy Practices– General Data Protection Regulation
As part of our commitment to protecting your privacy, this statement is designed to provide you with information regarding how The Microsetta Initiative (TMI), part of University of California San Diego (“UC San Diego”) and the Center for Microbiome Innovation (CMI), collects and processes the information you share when you use our websites located at https://microsetta.ucsd.edu and https://microsetta-rest.ucsd.edu, and each of their associated domains (together, the “Sites”), utilize the Services of ours which include participating in TMI as a research subject or when you otherwise communicate with TMI. This statement is applicable to individuals using TMI Services.
For purposes of the General Data Protection Regulation (“GDPR”), the data controller is the Regents of the University of California, with a location at UC San Diego Biomedical Research Facility 2 (BRF2), Room 1125, 9500 Gilman Dr., La Jolla, CA 92093-0413.
Research Purpose and What to Expect as a Participant
The purpose of the TMI research study is to assess more accurately the differences among people and whether these differences can be attributed to factors such as lifestyle, diet, body type, age or the presence of associated diseases. The study aims to collect microbiome samples and phenotypic data by engaging citizen scientists through research participation and education through outreach to build a resource to further our understanding of the human microbiome. Dr. Rob Knight is conducting the study to find out more about the trillions of bacteria and other microorganisms (called your microbiome) that live in and on your body. This includes eukaryotes like fungi and parasites, prokaryotes like bacteria and archaea, and viruses.
By becoming a citizen scientist, you may contribute in several ways:
- Submitting your sample(s) and completing online questionnaires to receive microbiome and nutritional reports
- Completing online questionnaires to contribute to data
- Placing a monetary contribution to support our initiative
Research activities performed by TMI are overseen by UC San Diego’s Office of IRB Administration, which is an independent ethics review board known as an Institutional Review Board or “IRB”. TMI may be sponsored by, conducted on behalf of, or in collaboration with academic research institutions or partnered companies. Participation in research is entirely voluntary. You may refuse to participate or withdraw your participation for the continued collection, use or disclosure of your information, at any time, through TMI online account services without penalty or loss of benefits to which you are entitled.
TMI collects personal information about you called Personal Data. Your Personal Data is collected when you sign up or fill in a form on the TMI websites, contact TMI online, create an online account, and/or participate in the research study. This includes the following information:
- Contact information: information you provide when you create an online account or subscribe to newsletters, which includes name, email address, and mailing address.
- Payment information: information you provide when you place a contribution via the third-party site, Fundrazr. We will only collect, use, and disclose your information to the extent necessary to allow the third-party site to perform the purchase-related transaction. However, please refer to the site’s own privacy policy to understand the manner in which your personal information will be handled by this provider.
- Survey information: we may collect demographic information, such as your age, gender, date and country of birth, and lifestyle preferences as well as any information about you that is associated with or linked to, or could be linked to, any of the foregoing data. We also collect more sensitive information about you, with your explicit consent, where the processing is necessary to meet a legal or regulatory obligation, the processing is in connection with UC establishing, exercising or defending legal claims, or is otherwise expressly permitted by GDPR. This sensitive information includes information about your racial or ethnic origin and data concerning health.
- Sample collection: the sample(s) you provide for processing may include skin, nasal, oral, fecal, mucus from vagina, urine, ear wax, hair, tears, blood, pet, or environment as described in the kit instructions.
- Log, Cookie and Device Data: We may collect log data, which is information collected whenever you visit a website. This log data includes your Internet Protocol address, browser type and some settings, the date and time of your request, how you used the Service, and cookie data. Depending on how you are accessing the Services, we may use “cookies” (small text files stored by your computer when you visit our website) or similar technologies. In addition to log and cookie data, we also use third-party cookies to help us analyze and understand how you use and interact with the TMI website. Analytical cookies installed by Google Analytics will calculate the number of visitors, session, and campaign data to keep track of site usage for the site’s analytics report. The cookies collect information in a way that won’t directly identify you. For more detailed information about how we use cookies or to disable your cookies, please review our Cookies Policy by visiting the “Cookie Settings” on the TMI website or you may contact the UC Privacy Official identified below.
How We Use Your Personal Data
TMI processes your Personal Data for the following purposes and bases:
- Conducting the TMI research study: Informed consent will be obtained to collect and process your Personal Data and/or sample(s) for your participation in the study. The informed consent form provided to you outlines the Personal Data that will be collected and the intended purpose of the collection and will request that you affirmatively indicate that you consent to the intended collection of your Personal Data for that purpose, prior to collecting the data. If you do not consent to the collection and intended processing purpose, we will refrain from collecting and processing your Personal Data.
- Processing your payment contribution through Fundrazr; this is generally required to process a transaction requested by you.
- Securing our Services; authenticating your email address when creating an online account through a two-step verification process to provide an added layer of security in addition to your password.
- Processing your sample(s) to extract and sequence microbiota and microbiota products (both DNA and RNA, and molecules like proteins and metabolites) to see what microorganisms are present in your sample and in what proportions. This protocol for extracting DNA is described in the Earth Microbiome Project website and allows us to target the various genetic parts of the microbiome (like the 16S rRNA gene for identifying bacteria). The sequencing is not for diagnostic purposes and does not target human DNA and will not be analyzed as part of this or any future studies.
- Analyzing and publishing your sample(s) in scientific articles. Remaining sample(s) may be used to look more carefully at specific microorganisms present, or to investigate other chemical compounds such as metabolites or proteins.
- Providing you a report detailing the results of our analysis on your sample, as well as facts and figures comparing your microbiome’s composition to that of other study participants. The results from the analysis cannot be used by you or your doctor to confirm a clinical diagnosis and we are not testing for infectious disease.
- Communicating with you to provide information regarding TMI general program updates and future research opportunities. We will generally only do this where it is in our legitimate interest and where you have not objected or withdrawn any prior consent given.
- Processing and dealing with any complaints or inquiries made by you or legally on your behalf. We do this because it is in our legitimate interest as part of the services UC offers to you.
- UC may also be required to disclose your Personal Data to authorities who can request this information by law that is binding on UC.
Recipients of Your Personal Data
TMI may share your Personal Data with the following recipients:
- Other UC locations or departments: Other UC locations or departments in order to properly conduct the research or where it is in UC’s legitimate interests.
- Service Providers: Personal Data will be provided to our third party service providers who perform various functions to enable us to provide our TMI Services, such as sending email communications, physical dispatch of the kits, receiving and processing data, or third party surveys. These vendors are authorized to use your personal information only as necessary to provide these services to us.
- UC Partners and Collaborators: When permitted by law, UC may share Personal Data with research partners, sponsors, or other academic research institutions, including those performing surveys or processing your sample in order to contribute to understanding how health and lifestyle factors associated with the microbiome translate between populations. Data from this study may be used for future research studies or shared with other researchers for future research after directly identifying information has been removed.
- Public and Governmental Authorities: Entities that regulate or have jurisdiction over UC such as regulatory authorities, law enforcement, public bodies, and judicial bodies. We may need to report information about known or reasonably suspected incidents of abuse or neglect of a child, dependent adult or elder including physical, sexual, emotional, and financial abuse or neglect.
- Public Data Repositories: Data from this study may be shared with the research community and made public through the European Bioinformatics Institute and Qiita to advance science and health. We will remove or code any personal information that could directly identify you before files are shared with other researchers to ensure that, by current scientific standards and known methods, no one will reasonably be able to identify you from the information we share. Despite these measures, we cannot guarantee anonymity of your personal data.
- Corporate Transactions: A third party in connection with any proposed or actual reorganization, merger, sale, joint venture, assignment, transfer or other disposition of all or any portion of UC’s business.
If your Personal Data is shared with a third party, UC will require that the third party uses appropriate measures to protect the confidentiality and security of your Personal Data.
We may also need to share your Personal Data as required to respond to lawful requests and legal process; to protect our rights and property and those of our agents, customers and others, including to enforce our agreements and policies; and in an emergency, to protect UC and the safety of our students, faculty and staff or any third party.
TMI is committed to protecting the privacy of children who use our Sites and participate in the research study. This privacy statement provides details regarding collection of Personal Data identified above, disclosure, and parental consent practices with respect to information provided by children under the age of 13 (“child” or “children”). This policy is in accordance with the U.S. Children’s Online Privacy Protection Act (“COPPA”), and outlines our practices in the United States regarding children’s personal information. Consistent with the requirements of COPPA, we will require a parent or guardian to create an online account with their email address before we knowingly collect any personal information from a child.
TMI does not knowingly collect personal identifiable information from a child without parental or legal guardian consent. If a child under 13 has provided us with personal information without parental or legal guardian consent, the parent or legal guardian may contact us by emailing us at microsetta@ucsd.edu. We will remove the information and unsubscribe the child from any of our marketing lists. A parent or legal guardian may access and review the Personal Data we have collected about their child, update their child’s information, request deletion, or refuse to allow further collection or use of the information.
Security Measures and Retention
UC takes appropriate physical, administrative and technical measures to protect Personal Data that are consistent with applicable privacy and data security laws and regulations. For more information about how UC protects data, refer to IS-3 Electronic Information Security. We take every precaution to protect and secure your Personal Data. All data you provide is stored on secure systems within UC San Diego’s infrastructure and directly identifying information is accessible only to critical research personnel.
UC will only retain your Personal Data for the duration necessary to fulfill the research objectives and to ensure the integrity of the research. However, your information may be retained for a longer period to comply with legal or regulatory requirements.
International Transfer of Your Personal Data
In order to fulfill the intended processing purposes described above, your Personal Data may be transferred outside of the European Economic Area (EEA), specifically to the United States, which does not protect Personal Data in the same way that it is protected in the EEA. UC will undertake appropriate measures to ensure adequate protection of Personal Data, including utilizing appropriate physical, administrative, and technical safeguards to protect Personal Data, as well as executing standard contractual clauses approved by the European Commission or a supervisory authority under GDPR, or obtaining your consent, where appropriate.
As required by the General Data Protection Regulation and applicable EU Member State and EEA state law, if you are located in the European Economic Area, you have a right to:
- Access your Personal Data, as well as information relating to the recipients of your Personal Data, the purposes of processing your Personal Data, the duration for which the Personal Data will be stored, and the source of Personal Data that has not been provided by you;
- Rectify or correct inaccurate or incomplete Personal Data concerning you, taking into account the purposes of the processing, and the right to have incomplete Personal Data completed;
- Move your Personal Data to another controller or processor. UC will facilitate the lawful transfer of your data to the extent possible;
- Have your Personal Data erased in certain circumstances;
- Restrict the processing of your Personal Data in certain circumstances;
- Object to the processing of Personal Data in certain circumstances;
- Withdraw your consent to the processing of your Personal Data; the withdrawal does not affect the lawfulness of processing based on your consent before its withdrawal. You may withdraw your consent through TMI online account services.
- Know whether your Personal Data is being used for automated decision-making, including profiling. In those cases, UC will give you meaningful information about the logic involved, the significance and the envisaged consequences of such processing for your data, and the right to request human intervention; and
- Lodge a complaint with a supervisory authority.
UC may be obligated to retain your Personal Data as required by U.S. federal or state law.
If you wish to exercise your rights, you can contact the UC Privacy Official identified below.
You may choose not to visit or use UC Sites or participate in the TMI research study. If you choose not to share your Personal Data with UC or UC-approved third parties for TMI Services you will not receive general program updates or information on future research opportunities, you won’t be able to participate in the research study and receive a kit, and/or you won’t receive your microbiome results. You may choose to set your web browser to refuse cookies, or to alert you when cookies are being sent. If you choose to reject cookies, some parts of the Sites may not function properly.
Questions and Complaints; UC San Diego Chief Privacy Officer
If you have questions or complaints about our treatment of your Personal Data, or about our privacy practices more generally, please feel free to contact the UC Privacy Official at ucsdprivacy@ucsd.edu.
Effective Date: This statement is effective as of September 28, 2022.
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