WEBSITE PRIVACY STATEMENT
Last Updated: June 15, 2023
Please read below to see how the Healthy Brain and Child Development (“HBCD”) Study uses – or processes – your data and how we protect your privacy when you use our website. We aim to be clear when we collect personal information and not do anything you would not reasonably expect.
WHO WE ARE
The HBCD Study is the largest long-term study of early brain and child development in the United States. The HBCD Study Consortium is funded by the National Institutes of Health (NIH) and consists of an Administrative Core, a Data Coordinating Center, and 27 study sites across the United States. The Consoritum also works in close collaboration with our federal partners at the NIH and external board members. The HBCD Administrative Core is based at UC San Diego, a higher education research institution in the United States operated by the Regents of the University of California, and is responsible for the development and maintenance of the HBCD website.
This Privacy Statement explains how the HBCD Study (“we”, “us” or “our”) collects, uses, discloses, and otherwise processes personal information (as defined below) in connection with our website, https://hbcdstudy.org (the “Site”) and the related content, platform, and other functionality offered on or through our Site (collectively, the “Services”).
Our Services are not directed to, and we do not intend to, or knowingly, collect or solicit personal information from children under the age of 13. If an individual is under the age of 13, they should not use our Services or otherwise provide us with any personal information either directly or by other means, except when done with the explicit permission of the child’s parent or guardian.
Our Services may include links to third-party websites, plug-ins and applications. Except where they post, link to or expressly adopt or refer to this Privacy Statement, this Privacy Statement does not apply to, and we are not responsible for, any personal information practices of third-party websites and online services or the practices of other third parties. To learn about the personal information practices of third parties, please visit their respective privacy notices.
WHAT IS PERSONAL INFORMATION?
When we use the term “personal information” in this Privacy Statement, we mean any data or information that identifies, relates to, describes, is capable of being associated with, or could reasonably be linked, directly or indirectly, with a particular natural person or household or any other data or information that constitutes “personal data”, “personal information,” or “personally identifiable information.”
OUR COLLECTION OF PERSONAL INFORMATION
We obtain personal information about you in the following ways.
Personal Information We Collect Directly from You
We collect the following categories of personal information submitted to us by individuals through the Services:
- Inquiry and Communications Information. We collect personal information when we communicate with you, for example, in custom messages sent through forms, to one of our email addresses, or via phone.
- Newsletter and Marketing Emails, including email address and applicable interests and communication preferences.
- City, State, and/or Zip Codes information when you use our search tool to locate your nearest study recruitment sites.
Personal Information We Collect Automatically
As is true of many websites, we and our third-party partners may automatically collect certain information from or in connection with your device when visiting or interacting with our Services, such as the list below :
- Log Data, including internet protocol (IP) address, operating system, device type and version, browser type and version, browser id, the URL entered and the referring page/campaign, date/time of visit, other hardware or software data, the time spent on our Services, and any errors that may occur during the visit to our Services. Log data may overlap with the other categories of data below.
- Analytics data, including the electronic path you take to our Services, through our Services and when exiting our Services, as well as your usage and activity on our Services, such as the time zone, first and last active date and time, usage history (flows created, campaigns scheduled, emails opened, total logins) as well as the pages, links, objects, services you view, click, or otherwise interact with. If you have a Google account, Google has information about you, such as your age, gender, interests, and online behaviors that it can combine with other information about you. Adsense and DoubleClick tracking data are also used to ascertain a user's interests based on browsing behavior, eventually forming a pattern that can be assigned to market segments.
- Location data, such as city-level location information we derive from your IP address or other device information.
- Data from Cookies and Other Technologies. We and our third-party providers may use (i) cookies or small data files that are stored on an individual’s computer and (ii) other, related technologies, such as web beacons, pixels, floodlights, embedded scripts, location-identifying technologies and logging technologies (collectively, “cookies”) to automatically collect this personal information.
Personal Information from Other Entities
We may receive the same categories of personal information as described above from the following entities:
- Social Media. When you interact with our Services through various social media networks, such as when you “Like” us on Facebook or follow us, comment, or share our content on Facebook, Twitter, or other social networks, we may receive some information about you that you permit the social network to share with third parties. The data we receive is dependent upon your privacy settings with the social network and may include certain profile information.
OUR USE OF PERSONAL INFORMATION
We use personal information we collect to:
- Fulfill or meet the reason the information was provided, such as to fulfill our contractual obligations, to deliver the Services you have requested and to process transactions;
- Manage our organization and its day-to-day operations;
- Register you for and provide you access to events and conferences;
- Communicate with individuals, including via email, social media and/or telephone calls, and to send marketing communications in accordance with the individual’s preferences;
- Investigate and respond to your inquiries, and to communicate with you, and to improve and enhance the Services we offer to our users;
- Operate, maintain, and provide you with the features and functionality of the Service, as well as to communicate directly with you, such as to send you email messages about products and services that may be of interest to you;
- Administer, facilitate, improve, and personalize our Services, including by recognizing an individual and remembering their information when they return to our Services;
- Identify and analyze how individuals use our Services, and to improve and customize our Services to address the needs and interests of our user base and other individuals we interact with;
- Test, enhance, update and monitor the Services, or diagnose or fix technology problems;
- Distinguish you from other users of our Services, which helps us monitor and analyze how you use and interact with our Services. It also helps us and our partners to determine products and services that may be of interest to you.
- Help maintain the safety, security and integrity of our property and Services, technology assets and business;
- To fulfill any other purpose for which you provide personal information and or any other lawful purpose, or other purpose that you consent to; and
- For research, educational, and publication purposes 1) in accordance with IRB and privacy office requirements, if in identifiable form, or 2) in aggregated format such that no identifying information from you will be contained in the release.
Where you choose to contact us, we may need additional information to fulfill the request or respond to inquiries.
OUR SHARING OF PERSONAL INFORMATION
We may also share, transmit, disclose, grant access to, make available, and provide personal information with and to others, as follows:
- Within the HBCD Study. We may share personal information with other locations, units, or sites that are part of the HBCD Study. The institutions, partners, and individuals who are part of the HBCD Study Consortium are listed on our website.
- Other Service Providers. In addition to the third parties identified above, we engage other third-party service providers that perform business or operational services for us or on our behalf, such as website hosting, infrastructure provisioning, IT services, analytics services, and administrative services.
- Academic Research and Education. Data may be provided for research, educational, and publication purposes 1) in accordance with IRB, Privacy Office, and Office of Information Assurance requirements, if in identifiable form, or 2) in aggregated format such that no identifying information from you will be contained in the release.
- Legal Obligations and Rights. We may disclose personal information to third parties, such as legal advisors and law enforcement:
- in connection with the establishment, exercise, or defense of legal claims;
- to comply with laws or to respond to lawful requests and legal process;
- to protect our rights and property and the rights and property of others, including to enforce our agreements and policies;
- to detect, suppress, or prevent fraud;
- to protect the health and safety of us and others; or
- as otherwise required by applicable law.
YOUR RIGHTS AND CHOICES OVER YOUR INFORMATION
- You may choose not to visit or use our Site or use our Services.
- You can stop receiving promotional email communications from us by clicking on the “unsubscribe” link provided in such communications.
- If a child under the age of 13 has provided personal information to us without parent or guardian consent, we encourage the child’s parent or guardian to contact us to request that we remove the personal information from our systems.
- You have a right to:
- Access your personal information, as well as information relating to the recipients of your personal information, the purposes of processing, the duration for which the personal information will be stored, and the source of personal information that has not been provided by you;
- Have your personal information erased in certain circumstances;
- Restrict the processing of your personal information in certain circumstances;
- Withdraw your consent to the processing of your personal information collected through our Services. The withdrawal does not affect the lawfulness of processing based on your consent before its withdrawal; and
- Know whether your or your personal information is being used for automated decision-making, including profiling. In those cases, HBCD 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
The University of California may be obligated to retain your personal information as required by law, regulation, or policy.
You may exercise your rights and submit any questions or concerns using the procedure under “Contact Us.” Please do not include any personally identifiable or other sensitive information in an email or voicemail message.
HOW WE SAFEGUARD YOUR INFORMATION
We maintain technical, physical, and administrative safeguards to protect the security, integrity, and privacy of personal data, including the following practices:
- storing information we collect on computer systems located in controlled facilities with limited access;
- protecting the transmission of your information over the internet, through the use of encryption, such as the secure socket layer (SSL) protocol;
- routine backups of the web server data are maintained as part of the security strategy;
- using a variety of security technologies and procedures to help protect your personal information from unauthorized access, use, or disclosures; and
- limiting access to data to only authorized personnel
We endeavor to protect the privacy of the personal information we hold in our records, but we cannot guarantee complete security. Unauthorized entry or use, hardware or software failure, and other factors, may compromise the security of your personal information.
UPDATES TO THIS PRIVACY STATEMENT
If you have any questions or requests in connection with this Privacy Statement or other privacy-related matters, please contact the UC San Diego Campus Privacy Office at firstname.lastname@example.org.