Privacy Policy

Summary

  • BGI-CGL respects your privacy. BGI-CGL will not sell, lease, or rent your individual-level Personal Information without explicit consent.
  • We are committed to providing a secure environment for the provision of scientific data and the use of our Services.
  • This summary provides highlights of our full Privacy Statement and applies to BGI-CGL collection and handling of your Personal Information. We encourage you to read the full Statement.

Definitions

  • "BGI-CGL" means the Cognitive Genomics Lab of BGI (formerly Beijing Genomics Institute), whose principal place of business is at Beishan Industrial Zone, Yantian District, Shenzhen, China.
  • "BGI-CGL Research" means scientific research that BGI-CGL performs with the intent to publish in a peer-reviewed scientific journal. BGI-CGL only uses Genetic and Self-Reported Information from participants who have given consent according to the applicable Consent Document.
  • "Service" or "Services" means BGI-CGL's services and website as accessed from time to time by a given participant, regardless if the use is in connection with an account or not.
  • What Personal Information We Collect. "Personal Information" is information that can be used to identify you, either alone or in combination with other information. BGI-CGL collects and stores the following types of Personal Information:
    • "Registration Information" is the information you provide about yourself when obtaining a login (e.g. name, email address, physical address, user ID, password).
    • "Genetic Information" is information regarding your genotype (e.g. the As, Ts, Cs, and Gs at particular locations in your genome), generated through processing of your saliva (or other tissue sample) by BGI-CGL or by its contractors; or otherwise processed by and/or contributed to BGI-CGL.
    • "Self-Reported Information" is all information about yourself, including your test scores and ancestral background, that you enter into surveys, forms, or features while signed in to your BGI-CGL account. Self-Reported Information is included in BGI-CGL Research only if it has been indicated for BGI-CGL Research use on the website and if you have given consent as described in the applicable Consent Document.
    • "Web Behavior Information" is information on how you use the BGI-CGL website (e.g. browser type, domains, page views) collected through log files, cookies, and web beacon technology.

How We Use Your Information

  • BGI-CGL collects Personal Information from you for all purposes necessary to fulfill the scientific goals of our research and to ensure the availability of our Services.
  • We use Registration Information to send you any necessary physical materials, inform you when your Genetic Information is available to you, and manage our Services.
  • We may disclose to third parties, and/or use in our Services, "Aggregated Genetic and Self-Reported Information", which is Genetic and Self-Reported Information that has been stripped of Registration Information and combined with data from a number of other users sufficient to minimize the possibility of exposing individual-level information while still providing scientific evidence. If you have given consent for your Genetic and Self-Reported Information to be used in BGI-CGL Research as described in the applicable Consent Document, we may include such information in Aggregated Genetic and Self-Reported Information intended to be published in peer-reviewed scientific journals. We emphasize that Aggregated Genetic and Self-Reported Information will be stripped of names, physical addresses, email addresses, and any other Personal Information that may be used to identify you as a unique individual.
  • We will never release your individual-level Genetic and/or Self-Reported Information to a third party without asking for and receiving your explicit consent to do so, unless required by law.
  • We use Web Behavior Information to track and monitor aggregate usage of our website, for quality control, and/or to improve our Services.

How to Contact Us

Questions about this Summary, our Privacy Statement, or about BGI-CGL's handling of your Personal Information may be emailed to privacy@cog-genomics.org, or sent to:

Attn: Privacy Administrator
Cognitive Genomics Lab
BGI-Hong Kong Co., Limited
16 Dai Fu Street
Tai Po Industrial Estate
N.T., Hong Kong

BGI-CGL Respects Your Privacy

The BGI Cognitive Genomics Lab (BGI-CGL) recognizes the importance of privacy and respects your desire for your data to be stored and accessed in a secure manner.

This Privacy Statement is intended to make you aware of how we handle your Personal Information. We are committed to providing you a secure, user-controlled environment for data provision and the use of our Services. At the same time, you share responsibility for maintaining privacy and security--for example, by keeping your login information secure.

We encourage you to familiarize yourself with our Privacy Statement. Our Consent Form explains that, by using our website and volunteering to participate in our research, you are allowing us to process your Personal Information according to the provisions set forth in the Consent Form and this Privacy Statement.

Your Personal Information

In the course of your participation in BGI-CGL's research, we collect several types of Personal Information. Personal Information is information that could be used to identify you, either alone or in combination with other information. We collect such information from you when you create a personal account and complete surveys and forms.

  • "Registration Information" is the information we collect from you when you create an account. Examples of such information include your name, mailing address, email address, and birthdate.
  • "Genetic Information" consists of your genotype, e.g. the As, Ts, Cs, and Gs at particular locations in your genome. Genetic Information is generated when you volunteer to receive BGI-CGL's Service and your saliva sample (or other tissue sample) is analyzed and processed or you otherwise contribute or access your Genetic Information through our Services. Our instructions for sample collection and shipment clearly require you to send only your saliva sample to our designated processing center labeled with the unique barcode and no other identifier. The unique barcode identifies you to us but not to the laboratory. No other Personal Information is required for the analysis. To protect your privacy, receiving personnel at the laboratory will remove and discard any identifying information (e.g. name, address) included with saliva samples before testing personnel receive the samples for genotyping. Receiving personnel do not perform testing, and testing personnel only handle samples labeled with the unique barcode. DNA and saliva samples are destroyed after the laboratory completes its work. The laboratory securely sends the resulting Genetic Information to us along with your unique barcode. Genetic Information is stored securely on our servers; the laboratory also stores your Genetic Information, but labeled only with a sample barcode. The laboratory conducting DNA extraction and analysis does not have access to your name, other Registration Information, or any other Personal Information.
  • "Self-Reported Information" includes information you provide to us, including but not limited to information about your test scores, educational credentials, personal traits (e.g. height, weight), ethnicity, and/or family history (e.g. similar information about family members). We collect this information from you if and when you enter the information into surveys, forms, or features while signed in to your account. Self-Reported Information is included in BGI-CGL Research only if it has been indicated for BGI-CGL Research use on the website and if you have given consent as described in the applicable Consent Document.
  • "Web Behavior Information" is information on how you use the BGI-CGL website (e.g. browser type, domains, page views) collected through log files, cookies, and web beacon technology.

How We Use Registration Information

We use your Registration Information to authenticate your website visits and usage; to validate certain Self-Reported Information; to send you the sample collection kit; to enable your use of our Services; to communicate with you about information, services, and products that you have requested; and to manage and improve our website, software, and Services. We give you the opportunity to opt out of optional communications, either through our Service or by contacting our Privacy Administrator at privacy@cog-genomics.org.

How We Use Genetic and Self-Reported Information

We use your Genetic and Self-Reported Information to test our research hypotheses and provide you with BGI-CGL Services.

If, and only if, you have given consent to participate in BGI-CGL Research as described in the applicable Consent Document, we may include your Genetic Information and Self-Reported Information indicated for BGI-CGL Research use in Aggregated Genetic and Self-Reported Information disclosed to third parties for the purpose of publication in a peer-reviewed scientific journal. BGI-CGL Research is intended to advance genetic knowledge.

How We Use Web Behavior Information

Web Behavior Information is collected through log files, cookies, and web beacon technology during a visit to the BGI-CGL website. Web Behavior Information is used to improve our Services and the overall user experience.

  • Log Files. When users visit our website, BGI-CGL gathers certain information automatically and stores it in log files. This information may include Internet Protocol (IP) addresses, browser type, Internet Service Provider, referring/exit pages, operating system, date/time stamp, and clickstream data (i.e. a list of pages or URLs visited). We use this information, which is not designed to identify individual users, to analyze trends, administer the site, track users' movements around the site, and gather demographic information about our user base as a whole. We may, in some circumstances, need to review this automatically collected data in combination with specific Registration Information to identify and resolve issues for individual users.
  • Cookies. The BGI-CGL website also uses cookies. A cookie is a small text file that is stored on a user's computer when you visit our website or any other website through your computer. We use both session cookies and persistent cookies to make it easier for you to navigate our site, improve the security of your Personal Information, enhance the functionality of certain features, and improve performance. The cookies we employ are used to enable secure access to your account when you are signed in to your account and are only applicable within the confines of our website.
    A session cookie expires when you close your browser. A persistent cookie remains on your hard drive for an extended period of time. You can remove persistent cookies by following directions provided in your Internet browser's "help" file. However, if you set your browser to reject cookies, your ability to use our site will be significantly impaired. In particular, you will not be able to access any part of our site that requires a sign-in, such as your account.
  • Web Beacons. A web beacon is a clear graphic image that is loaded by your web browser when it accesses a website and that records a user's visit to a particular web page. We, or third parties that work for us, may place cookies and web beacons on our website, in our emails, and in our advertisements that appear on other websites or in emails sent by others. We may use beacons to determine when someone views a web page, count how many individuals visit our website after clicking advertisements placed on other websites, or count how many people have volunteered after viewing an advertisement we placed. Web beacons may also help us determine the effectiveness of an email campaign because the beacons can count the number of individuals who open an email or forward it to others. We use this Web Behavior information to better tailor our participant outreach.
    If you wish to disable web beacons, it is possible to prevent your browser from loading them, although there is not currently a standard method for doing so.

Information Sharing

You may choose to disclose, through other means not associated with BGI-CGL, any part of your Personal Information to friends and/or family members, groups of individuals, third-party service providers, doctors or other health care professionals, and/or other individuals. We recommend that you make such choices carefully.

Personal Information, once released or shared, can be difficult to contain. BGI-CGL will have no responsibility or liability for any consequences that may result because you have released or shared Personal Information with a third party.

Information Disclosure

As a general rule, BGI-CGL will not disclose your individual-level Personal Information to any third party, except under the following circumstances: (1) we are required to do so by law (see the section below entitled "Information Disclosure Required by Law"); or (2) you have provided explicit consent for us to do so. However, BGI-CGL may disclose Aggregated Genetic and Self-Reported Information intended to be published in a peer-reviewed scientific journal to research collaborators or as a result of publication. We emphasize that Aggregated Genetic and Self-Reported Information will be stripped of names, physical addresses, email addresses, and any other Personal Information that may be used to identify you as a unique individual.

Information Disclosure Required By Law

Under certain circumstances Personal Information may be subject to disclosure pursuant to judicial or other government subpoenas, warrants, or orders. You acknowledge and agree that BGI-CGL is free to preserve and disclose any and all Personal Information to law enforcement agencies or others if required to do so by law or in the good faith belief that such preservation or disclosure is reasonably necessary to comply with legal process (such as a judicial proceeding, court order, or government inquiry) or obligations that BGI-CGL may owe pursuant to ethical and other professional rules, laws, and regulations.

Children's Privacy

BGI-CGL is committed to protecting the privacy of children as well as adults. A parent or guardian may collect a saliva sample from, create an account for, and provide Self-Reported Information on behalf of his or her child. The parent or guardian assumes full responsibility for ensuring that the information that he/she provides to BGI-CGL about his or her child is kept secure and that the information submitted is accurate.

Security

BGI-CGL takes seriously the trust you place in us. Hackers are a risk which you must be aware of before your participation, but we have taken high-level measures to countermand any unauthorized access to BGI-CGL data. These include:

  • BGI-CGL uses a range of reasonable physical, technical, and administrative measures to safeguard your Personal Information, in accordance with current technological and industry standards. In particular, all connections to and from our website are encrypted using Secure Socket Layer (SSL) technology.
  • All genomic data (gata) is stored separate from any Personal Information, identified only by a masked ID.
  • The Personal Information database is encrypted, and gata is encrypted separately using a GPG public key of the volunteer's choice.
  • The key linking these databases is masked. Hence, even a hacker who gained access to both databases would not be able to link any gata with any personal ID, without also gaining access to a third ID demasking key.

Please recognize that protecting your Personal Information is also your responsibility. We ask you to be responsible for safeguarding your password, secret questions and answers, and other authentication information you use to access our Services. You should not disclose your authentication information to any third party and should immediately notify BGI-CGL of any unauthorized use of your password. BGI-CGL cannot secure Personal Information that you release on your own or that you request us to release.

Contact Information

If you have questions about this statement, please email BGI-CGL's Privacy Administrator at privacy@cog-genomics.org. You can also contact us at this address if you have a question about BGI-CGL's handling of your information:

Attn: Privacy Administrator
Cognitive Genomics Lab
BGI-Hong Kong Co., Limited
16 Dai Fu Street
Tai Po Industrial Estate
N.T., Hong Kong