Protecting your privacy is very important to us. The National Human Genome Research Institute (NHGRI) does not collect any personally identifiable information (PII) about you during your visit unless you choose to provide it to us. NHGRI never collects information for commercial marketing or any purpose unrelated to the NHGRI mission and goals.
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 has three Facebook pages - Genome.gov | National Human Genome Research Institute (NHGRI), National DNA Day 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 Livestream page - GenomeTV. Livestream 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. Livestream also enables NHGRI to embed streaming video on the genome.gov website. Users do not need to register with Livestream 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.
NHGRI has three Twitter feeds - @Genome_gov, @DNAday and @ENCODE_NIH. We use Twitter 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 Twitter feeds without subscribing to them, users who want to subscribe to (or follow) NHGRI Twitter feeds must create a Twitter 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 Twitter 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: August 29, 2019