The NHGRI is committed to protecting your privacy. We will not collect any personal information about you when you visit our website (other than the standard information automatically collected and stored in the Web server's logs) unless you choose to provide it to us.
Detailed information regarding server logs, and voluntary submission of personal information, "cookies", security, and intrusion detection systems is provided below.
Types of Information Collected
When you browse through any website, certain information about your visit can be collected. We automatically collect and temporarily store the following type of information about your visit:
- Domain from which you access the Internet;
- IP address (an IP address is a number that is automatically assigned to a computer when surfing the Web);
- Operating system and information about the browser used when visiting the site;
- Date and time of your visit;
- Pages you visited;
- Address of the Web site that connected you to an NIH Web site (such as google.com or bing.com); and,
- Demographic and interest data.
We use this information to measure the number of visitors to our site and its various sections and to help make our site more useful to visitors. This information cannot be used to identify you as an individual.
Methods of Collecting Information
Genome.gov uses Google Analytics and Alexa to collect information from the above list automatically and continuously. We use this information to measure the number of visitors to our site and its various sections and to distinguish between new and returning visitors to help make our site more useful to visitors. However, no personally identifiable information (PII) is collected.
From time to time, NHGRI staff conducts analyses and reports on the aggregated data from these systems. The reports are only available to NHGRI website managers, members of their Communications and Web Teams, and other designated staff who require this information to perform their duties.
NHGRI retains this data only as long as required by law or needed to support the mission of the NHGRI website.
The Office of Management and Budget Memo M-10-22, Guidance for Online Use of Web Measurement and Customization Technologies allows Federal agencies to use session and persistent cookies.
When you visit any website, its server may generate a piece of text known as a "cookie" to place on your computer. The cookie allows the server to "remember" specific information about your visit while you are connected.
The cookie makes it easier for you to use the dynamic features of Web pages. Cookies from Genome.gov web pages only collect information about your browser’s visit to the site; they do not collect personal information about you.
There are two types of cookies, single session (temporary), and multi-session (persistent). Session cookies last only as long as your Web browser is open. Once you close your browser, the cookie disappears. Persistent cookies are stored on your computer for longer periods.
- Temporary (Session) Cookies: We use session cookies for technical purposes such as improving navigation through our site. These cookies let our server know that you are continuing a visit to our site. The "session" cookie is not permanently stored on your computer. The cookie and the information about your visit are automatically destroyed shortly after you close your browser to end the session. The OMB Memo 10-22 Guidance defines our use of session cookies as "Usage Tier 1-Single Session." The policy says, "This tier encompasses any use of single session Web measurement and customization technologies."
- Persistent Cookies: We use persistent cookies to enable Google Analytics and Alexa to differentiate between new and returning NHGRI visitors. The OMB Memo M-10-22 Guidance allows Federal agencies to use persistent cookies, which remain on your computer between visits to a website until they expire. The Guidance defines our use of persistent cookies as "Usage Tier 2 - Multi-session without Personally Identifiable Information (PII)." The policy says, "This tier encompasses any use of multi-session Web measurement and customization technologies when no PII is collected."
Opting Out/Disabling Cookies
If you do not wish to have session or persistent cookies placed on your computer, you can disable them using your Web browser. If you opt out of cookies, you will still have access to all information and resources at NIH.gov. Instructions for disabling or opting out of cookies in the most popular browsers are located at https://www.usa.gov/optout-instructions. Please note that by following the instructions to opt-out of cookies, you will disable cookies from all sources, not just those from genome.gov.
Protecting Personal Information
You do not have to give us personal information to visit the NHGRI website. However, if you choose to provide us with additional information about yourself through an e-mail message, form, survey, etc., we maintain the information only as long as needed to respond to your question or to fulfill the stated purpose of the communication.
If you choose to provide us with personally identifiable information, that is, information that is personal in nature and which may be used to identify you, through an e-mail message, request for information, paper or electronic form, questionnaire, customer satisfaction survey, epidemiology research study, etc., we will maintain the information you provide only as long as needed to respond to your question or to fulfill the stated purpose of the communication. If we store your personal information in a record system designed to retrieve information about you by personal identifier (name, personal email address, home mailing address, personal or mobile phone number, etc.), so that we may contact you, we will safeguard the information you provide to us in accordance with the Privacy Act of 1974, as amended (5 U.S.C. Section 552a).
NHGRI websites are maintained by the U.S. Government. They are protected by various provisions of Title 18, U.S. Code. Violations of Title 18 are subject to criminal prosecution in Federal court.
For site security purposes and to ensure that this service remains available to all users, we employ software programs to monitor traffic to identify unauthorized attempts to upload or change information, or otherwise cause damage. In the event of authorized law enforcement investigations, and pursuant to any required legal process, information from these sources may be used to help identify an individual.
Data Safeguarding and Privacy
All uses of Web measurement and customization technologies will comply with existing policies with respect to privacy and data safeguarding standards. Information Systems (IT) systems owned and operated by NIH are assessed using Privacy Impact Assessments posted for public view on the Department of Health and Human Services website. Groups of records that contain information about an individual and are designed to be retrieved by the name or other personal identifier linked to the individual are covered by the Privacy Act of 1974, as amended (5 U.S.C. Section 552a). For these records, NIH Systems of Record Notices are published in the Federal Register and posted on the NIH Senior Official for Privacy website.
Data Retention and Access Limits
NHGRI will retain data collected using the following technologies long enough to achieve the specified objective for which they were collected. The data generated from these activities falls under the National Archives and Records Administration (NARA) General Records Schedule (GRS) 20-item IC "Electronic Records," and will be handled per the requirements of that schedule (http://www.archives.gov/records-mgmt/grs/grs20.html).
Data Safeguarding and Privacy
NHGRI uses web measurement and customization technologies to help our websites function better for visitors and to better understand how the public uses the online resources we provide. All uses of web-based technologies comply with existing policies with respect to privacy and data safeguarding standards. Information Technology (IT) systems owned and operated by NIH are assessed using Privacy Impact Assessments (PIAs) posted for public view on the Department of Health and Human Services (DHHS) Web site. NIH conducts and publishes a PIA for each use of a third-party website and application (TPWA) as they may have a different functionality or practice. TPWA PIAs are posted for public view on DHHS website.
- Purpose of the web measurement and/or customization technology;
- Usage tier, session type, and technology used;
- Nature of the information collected;
- Purpose and use of the information;
- Whether and to whom the information will be disclosed;
- Privacy safeguards applied to the information;
- Data retention policy for the information;
- Whether the technology is enabled by default or not and why;
- How to opt-out of the web measurement/customization technology;
- Statement that opting-out still permits users to access comparable information or services; and,
- Identities of all third-party vendors involved in the measurement and customization process.
Data Retention and Access Limits
NHGRI will retain data collected using the following technologies long enough to achieve the specified objective for which they were collected. The data generated from these activities falls under the National Archives and Records Administration (NARA) General Records Schedule (GRS) 20-item IC "Electronic Records," and will be handled per the requirements of that schedule.
Third Party Websites and Applications (TPWAs)
As part of the OMB Memo M-10-06, Open Government Directive, NHGRI uses a variety of new technologies and social media options to communicate and interact with citizens. These sites and applications include popular social networking and media sites, open source software communities and more. TPWAs are web-based technologies that are not exclusively operated or controlled by NIH, such as applications not hosted on a.gov domain or those that are embedded on NHGRI Web pages. Users of TPWAs often share information with the general public, user community, and/or the third-party operating the Web site. These actors may use this information in a variety of ways. TPWAs could cause PII to become available or accessible to NHGRI and the public, regardless of whether the information is explicitly solicited or collected by NHGRI.
For any NHGRI TPWA that collects PII, the list below also includes details on the information NIH collects and how we will protect your private information.
NHGRI maintains an Instagram presence - @nhgri_nih - to upload photos and videos and send messages. Users are able to see the NHGRI Instagram feed without subscribing to it, but those users who want to subscribe to (or follow) the NHGRI Instagram must create an Instagram account at www.instagram.com.
To create an account, you must provide some personal information, such as your username, password, and email address. You have the option to provide additional information, including a photo or short biography. Users may also link their Facebook account to their Instagram account. Most information you provide for an Instagram account is available to the public, but you can modify your privacy settings to limit how much information is visible.
NHGRI has Facebook pages such as Genome.gov | National Human Genome Research Institute (NHGRI) and ENCODE (ENCyclopedia Of DNA Elements). The privacy policies for the Facebook pages are located on these sites.
On each of the NHGRI Facebook pages, NHGRI staff posts news and other items of interest to users. If you have a Facebook account or "Like" NHGRI Facebook pages, you can post comments or click on the "like" option for individual entries. If you comment or click on the "like" button, personally identifying information will be visible to NHGRI staff and other Facebook site visitors. The amount of visible personal information will depend on your own Facebook privacy settings. You can avoid displaying any personally identifiable information by not creating an account, not posting comments, and not clicking on the "like" options in Facebook.
NHGRI has a Vimeo page - GenomeTV. Vimeo is a platform that allows NHGRI stream its live events over the internet, allowing users to watch the video from their computers, via a web browser, or their mobile devices. Vimeo also enables NHGRI to embed streaming video on the genome.gov website. Users do not need to register with Vimeo to view the streaming video. However, if users want to participate in the moderated chat room that accompanies a live streaming event, they will need to register and create an account. Users can register with either an e-mail address and password or an existing Facebook account.
NHGRI participates in the Ask Me Anything (AMA) series - a unique format that allows scientists to speak about their work in a manner that is not possible within the confines of traditional communication practices. In this format, questions can be explained individually and follow-up questions or comments may be fielded so that the community has a clearer understanding of the research being discussed. NHGRI uses this platform as a way to discuss our intramural research, Extramural Research Programs, new initiatives in funding, or general issues related to genomics research and genomic medicine. In effort to bring science education to the public, Reddit Science has created an independent, science-focused AMA Series. The goal is to encourage discussion and facilitate outreach while helping to bridge the gap between scientists and the general public. You do not need to register with Reddit to view the discussions because questions and answers are visible in the public domain.
X (Formerly Twitter)
NHGRI has X feeds such as @Genome_gov and @NHGRI_Director. We use X to send short messages (up to 140 characters) or "tweets" to share information about NHGRI with our audiences and respond to comments and inquiries sent via Twitter to NHGRI. While users may read the NHGRI X feeds without subscribing to them, users who want to subscribe to (or follow) NHGRI X feeds must create a X account at www.twitter.com.
To create an account, you must provide some personal information, such as name, user name, password and e-mail address. You have the option to provide additional personal information including a short biography, location or a picture. Most information you provide for a X account is available to the public, but you can modify how much of your information is visible by changing your privacy settings at the Twitter.com website.
Last updated: October 20, 2023