Privacy Statement

The GeneConvene Virtual Institute (“Virtual Institute”, “us”, “we”, or “our”) appreciates the trust and respects the privacy of everyone who uses our Website, (“Website”). This Privacy Statement (“Privacy Statement”) explains how the Virtual Institute collects, uses, stores, and protects the information that we collect from users of our Website (and through avenues such as social media) as well as your rights and choices regarding the information that we collect.

The GeneConvene Virtual Institute is part of the GeneConvene Global Collaborative, an initiative of the Foundation for the National Institutes of Health (FNIH).  The FNIH is a Maryland, U.S.-based 501(c)(3) charitable foundation, not a Federal agency. As a result, information that we collect on our Website and social media, including Personal Information, may be transferred to our U.S. offices to permit us to comply with our legal and contractual obligations and to perform charitable activities. In addition, we may work with third-party service providers in the United States and in other countries to support our charitable activities. Thus, Personal Information may be transferred to, stored on servers in, and accessed from the United States and countries other than the country in which the information was initially collected.

Contact Us

If you have any questions about this Privacy Statement, please contact us:

“Personal Information” means any information from or about a person that either identifies that person directly or that makes that person identifiable when it is combined with other information from or about that person from any source. Personal Information stops being Personal Information when it has been aggregated, deidentified, or otherwise anonymized sufficiently that the individual is no longer identified or identifiable using reasonable efforts, resources, and technology.

“Sensitive Personal Information” is Personal Information that reveals racial or ethnic origin, political opinions, religious or philosophical beliefs, or trade union membership; genetic and biometric data if used for identification purposes; data about health, sex life, or sexual orientation; and data about criminal convictions or offenses.

Categories of Personal Information that We Collect on the Website

-Email address

If you choose to communicate with us through an online form, by sending us an email, by requesting information, by registering for one of our events, by engaging our social media, by collaborating with us, by donating to us, or by otherwise contacting us, we will collect whatever information, including Personal Information, that you choose to provide us with. We will combine that information with other information that we collect from and about you as described in this Privacy Statement.

The Virtual Institute receives information in a statistical and aggregated format to assess the effectiveness of our social media platforms (such as Facebook, Twitter, Flickr, YouTube, or LinkedIn) and improve user experience. However, we might also obtain your Personal Information through your use of social media depending on your settings or the privacy policies of these social media services. To change your settings on these services, please refer to their privacy notices, which will tell you how to do this.



Our Website automatically creates logs regarding user sessions that contain information about the features that you use, the actions that you take, and the information that you access. When your session ends, the Virtual Institute only retains the information in a statistical and aggregated format (non-Personal Information) that we use for assessing the effectiveness of our Website and improving user experience.


Cookies are small pieces of information transferred to your computer’s hard drive through your web browser to enable our systems to recognize your preferences and settings. Cookies collect information such as the type of search engine used, the sections of the Website visited, and other Website usage information. Most browsers automatically accept cookies, and you may manually disable them. For more information on disabling cookies, go to the “help” menu on your browser or to or Our Website may still be viewed if you choose to disable cookies, but your use and enjoyment of our Website may, but will not necessarily, be adversely affected.


Our Website uses Google Analytics, a web analytics service provided by Google, Inc. (“Google”). Google uses cookies to help us analyze how visitors use our Website. The information generated by the cookie about your use of our Website is generally transmitted to and stored on a Google server in the United States. We have activated IP anonymization so that Google will truncate/anonymize the last eight-bit segment of your IP address beforehand within Member States of the European Union or other parties to the Agreement on the European Economic Area. Only in exceptional cases will the full IP address be transmitted to a Google server in the United States and truncated there. Google will use this information for evaluating your use of our Website, compiling reports on the website activity, and providing us with other analytic services relating to our Websites and Internet use. Google will not associate your IP address with any other data held by Google.

You may manage and opt out of Google’s use of cookies by visiting Google’s Ads settings and selecting the appropriate settings in your browser. However, please note that if you do so, you may not be able to use the full functionality of our Website. Alternatively, you can prevent Google’s collection and use of data by downloading and installing the browser plugin available at: and/or opt out by visiting or

For further information on Google’s terms of use and data protection/privacy, please see,, and

We collect and retain information from Google Analytics in a statistical and aggregated format (non-Personal Information) to assess the effectiveness of our Website and improve user experience.

Email Tracking Technology

When the Virtual Institute sends an email to its mailing list, we use MailChimp software to determine which email recipients opened the email and/or clicked on the mailing. We do this to assess, monitor, and analyze trends, usage, and activities in connection with our mailings. MailChimp will also determine whether a recipient unsubscribed, or if a recipient’s email address did not work.

MailChimp’s security and privacy policy may be accessed at

The Virtual Institute does not collect, use, share, or disclose your Personal Information for anything other than the following lawful purposes:

To establish and maintain contractual relationships with our stakeholders:

To establish relationships with new stakeholders;
To fulfill our obligations to current stakeholders;
To contact stakeholders regarding required business communications, research collaborations, donor-required communications, technical notices, updates, security alerts, and administrative messages; or
To enable individuals to access our Website.
To comply with our legal obligations:

To demonstrate compliance with applicable privacy and data security law;
To comply with incident monitoring, reporting, assessment, and notification requirements; or
To comply with other applicable criminal and civil law and regulatory requirements under federal, state, and international law.
To provide services and information that you request and consent to receive:

To provide customer service and support;
To communicate with you, including responding to your comments, questions, and requests;
To process and complete transactions, or
To provide direct marketing, email, and other distributed information distribution.
To fulfill our other legitimate interests to the extent that they are not overridden by individual interests, fundamental rights, or freedoms:

To administer, operate, maintain, and secure our Website;
To monitor and analyze trends, usage, and activities in connection with our Website;
To investigate and prevent fraudulent transactions, unauthorized access to our Website and other illegal activities;
To verify compliance with our internal policies and procedures
For accounting, recordkeeping, backup, and administrative purposes;
To customize and improve the content of our communications and Website;
To provide information and education; or
To develop new products, services, features, and functionality.

“Except to the extent necessary to fulfill our obligations, to accomplish one of the lawful purposes described in this Privacy Statement, or in response to your express instructions, we do not sell, transfer, or otherwise disclose Personal Information that we collect from or about you.

With your express content:
We will share your Personal Information with companies, organizations, or individuals outside of FNIH when we have your prior express consent to do so.

When You Choose to Directly Share Your Information About Our Website or Your Usage:
When you use our Website, certain features allow you to make some of your usage and content accessible to the public, directly or through social media platforms. We urge you to consider the sensitivity of any information prior to sharing it publicly or with other users.

With Our Service Providers, Partners and Others to Accomplish Our Purposes as Stated in this Privacy Statement:
We may share your information with our service providers and other third parties who perform services on our behalf, such as analytics, website maintenance, applications hosting, financial accounting, credit card payments, events registration, and other activities that further our purposes. Service providers such as analytics providers may collect information about your online activities over time when you use our Website.

When Necessary to Comply with Laws and Law Enforcement Requests or Otherwise to Protect FNIH, our Stakeholders, and Individuals:
We may disclose your information (including your Personal Information) to a third party if:

We believe that disclosure is reasonably necessary to comply with any applicable law, regulation, legal process, court order, or governmental request;
To enforce our agreements, policies, and terms of use;
To protect the security or integrity of FNIH research, services, or charitable activities;
To respond to an incident involving personal data for which FNIH has direct or indirect responsibility;
To protect the property, rights, and safety of the FNIH, our stakeholders, or the public
To prevent harm or illegal activities;
To respond to an emergency which we believe in the good faith requires us to disclose information to assist in preventing the death or serious bodily injury of any person; or
To investigate and defend ourselves against any third-party claims or allegations.

As the Result of a Business Transition:
We may share or transfer your information (including your Personal Information) in connection with, or during negotiations of, any merger, sale of company assets, financing, or acquisition of all or a portion of our organization to another organization. We will take reasonable steps to assure that any other entity involved continues to comply with the terms of this Privacy Statement. We will notify you of such a change in ownership or transfer of assets by posting a notice on our Website.

Sharing Aggregate, Anonymized, Deidentified, or Otherwise Non-Personal Data:
We may share Personal Information that has been aggregated, deidentified, or otherwise anonymized and thus does not directly or indirectly identify you and that cannot, with reasonable efforts, resources, and technologies, be used to reidentify you. Such aggregated, anonymized, deidentified, or otherwise not re-identifiable information is not Personal Information within the scope of this Privacy Statement or applicable privacy laws.

  • You may decline to share any Personal Information with us, in which case we may not be able to provide you with some of the features and functionality of our Website or fulfill your requests.
  • You may decline to accept cookies, but that decision may affect the functionality and performance of our Website.
  • You may update or correct your Personal Information at any time by contacting us through an avenue listed in this Privacy Statement.
  • You may opt out of receiving FNIH promotional email communications by using the unsubscribe link within each email.
  • You may request information about, and access to, the personal data that we collect from you.
  • You may ask questions about our privacy and data security practices regarding your Personal Information.
  • You may request that we delete information that we have collected about you.
  • You may ask us for a copy of the Personal Information that we collected from you.

To exercise any of these options or for additional information contact us at

The Virtual Institute uses a combination of technical and administrative controls to protect Personal Information it collects but no data transmission over the Internet or data storage system can be guaranteed to be 100% secure. If you have concerns about the security of your information with the Virtual Institute, please contact us immediately at

The Virtual Institute retains information as long as necessary to accomplish the purpose for which it was collected and to comply with its legal and contractual obligations and good corporate practice, including document retention standards.

Our Website is intended for individuals who are 16 years of age or older. We do not knowingly collect Personal Information from children under 16. If we become aware that a child under the age of 16 has provided us with Personal Information, we will take steps to delete such information. If you become aware that a child under the age of 16 has provided us with Personal Information, please contact us at

California Civil Code Section 1798.83 permits Website users who are California residents to request certain information regarding disclosures of Personal Information to third parties for their direct marketing purposes. The Virtual Institute does not engage in disclosing Personal Information to third parties for the purpose of facilitating their direct marketing purposes.

Please note that our website contains links to and from other websites. Except for certain websites that third parties operate on our behalf or that are used to provide a service on our behalf, we are not responsible for the privacy practices or the content of other websites and the information practices of those websites are not covered by this Privacy Statement.

Changes to this Privacy Statement

The Virtual Institute may change and update this Privacy Statement from time to time, including materially changing the use made of Personal Information described herein. Any change or update to our Privacy Statement will be posted on our Website under “Privacy Statement”.

Questions and Additional Information

If you have questions or concerns about this Privacy Statement, your Personal Information, or you wish to exercise your options as described in this Privacy Statement, please contact us at

Last Updated: August 3, 2020