Compliance

This Privacy Policy was last updated: August 1, 2024
At GeneDx LLC, we take our responsibility to protect patient rights seriously. This privacy policy (this “Privacy Policy”) explains what information GeneDx, LLC (“GeneDx”, “we” or “us”) collects from you when you use ourwebsite, online provider portal (which is available to health care providers), and applications (collectively, the “Website”), including without limitation, or interact with our third-party partners (“Partners”), as applicable.Please take a moment to review this information.
The collection, use and disclosure of protected health information in our capacity as a HIPAA covered entity is subject to our HIPAA Notice of Privacy Practices, foundhere.
We may revise this Privacy Policy from time to time. If we decide to change our Privacy Policy, we will post the revised policy here. If changes are significant and materially affect your rights under this Privacy Policy, we will make reasonable attempts to notify you before the changes become effective. In certain cases, we may also provide email notification of the revised Privacy Policy and either seek your consent or give you the right to opt out from our use of your Personal Information in accordance with the revised Privacy Policy. However, because we may make changes at any time without notifying you, we suggest that you periodically consult this Privacy Policy. Please note that our rights to use any information collected will be based on the privacy policy in effect at the time the information is used.
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1. How we protect your information

GeneDx is committed to protecting your privacy.We employ a range of physical, technical and administrative safeguards to secure the personally identifiable information (“Personal Information”) you entrust to us and protect it from loss, misuse, unauthorized access, disclosure, alteration, corruption or destruction. We take reasonable measures to protect your Personal Information to prevent against unauthorized use, access, disclosure, and destruction. Your name and email address, along with other information that can be used to identify you, constitute your Personal Information. Please be aware that, despite our best efforts, security measures are not impenetrable, and we can’t guarantee against misuse.
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2. What information we collect and how we collect it

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Contact Information

If you choose to contact us through the Website, we’ll collect your contact information, such as your name and email address, postal address, or phone number so we can communicate with you. If you write a message, we will store the message so we can reference it to tailor our responses to you.

Website Visitor or User Data

Directly or through the use of third-party data analytics services (including Google Analytics), we collect visitor or user information, including your IP address and server log data (the address of the web page you visited before using the Website, your browser type and settings, the date and time of your use of the Website, language preferences). We may gather your information about the device you are using to access our Website, including what type of device it is, what operating system you are using, device settings, application IDs, location, unique device identifiers, and crash data. Other data is collected, including data generated by your use of the Website and links you interact with. Further information on how Google uses data collected by Google Analytics can be found athttps://support.google.com/analytics/answer/6004245?hl=en. Information about how to opt out of Google Analytics can be found athttps://tools.google.com/dlpage/gaoptout/.

Account and Interaction Data

We may collect additional Personal Information that you voluntarily submit to us through the Website for other purposes, including information needed to open an account on the provider portal if you choose to do so. This information may include (1) user name and password; (2) name, email address, telephone number, home address, business address, occupation; (3) personal interests or concerns; (4) registration information pertaining to an educational program or event; or (5) answers to an online form or survey.

Deidentified Data

We collect deidentified patient data and share it with third parties only with your consent.GeneDx may collaborate with other scientists, researchers and drug developers to advance knowledge of genetic diseases, to develop new treatments, and provide greater access to genetic testing opportunities for patients. Any research that results in medical advances, including new products, tests or discoveries, may have potential commercial value and may be developed and owned by GeneDx or the collaborating researchers.


In some instances, deidentified patient data regarding genetic variants may be collated with other deidentified patient data and transmitted to a third party for commercial purposes.The data does not include any personally identifying information but may include specific identifying information about an ordering provider that has consented to the sharing of their information with third parties.In such circumstances, GeneDx will send deidentified test results data to third parties for research or commercial purposes and GeneDx may be compensated for the provision of testing services and for data sharing with third parties that is compliant with applicable law.

We do not collect or use biometric data for the purposes of identifying a person.
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3. How we use your information

• We may use your Personal Information, including any information you share with us, to provide and improve our programs and services. We share this information with third-party service providers or Partners upon your request, or our service providers or Partners to the extent necessary to provide you with our Services.
• If you are a patient, we may use your Personal Information to contact you about research opportunities, clinical trials, or clinical treatments for you, as permitted by law and by your consent. You can opt out of being contacted for research participation by submitting this form.
• If you choose to participate in a research project, we share your Personal Information for those research purposes as permitted and in compliance with applicable laws, and in accordance with your consent.
• We create de-identified and aggregated data from your Personal Information and may use and disclose the de-identified data, as permitted by law and by your consent.
• We use your information to operate, manage, and improve our Website, and for marketing and administrative purposes.
• If you communicate with us, we may send you newsletters and marketing information, until you decide to opt out. We may also send you notifications, updates, and changes about our Website and contact you to provide customer service and support.
• We may use your information to comply with legal or regulatory requirements, to respond to lawful requests, court orders and legal process, to enforce our rights, to prevent fraud, to protect the security of the Website and for safety.
• We may use your IP address and location data to analyze usage, administer our Website, and gather demographic information for aggregate use.
• With your consent, we may use your Personal Information in other ways.

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4. How we share your information

We do not knowingly sell, trade or otherwise share your Personal Information with any third parties without your consent, except as disclosed in this Privacy Policy and the HIPAA Notice of Privacy Practices, as required by law, and when we reasonably believe it is necessary to prevent or take action regarding illegal activities, suspected fraud, or to protect the safety of any person.


We may share Personal Information in collaboration with our Partners, including companies that assist with health records collection, business analytics, data processing, customer and user management, and other services. We instruct these parties to use your Personal Information only to the extent necessary to provide the services we have requested. Although we take reasonable steps to ensure that Partners receiving your information are bound by privacy restrictions as restrictive as those set forth in this Privacy Policy, we are not responsible for any issues that may arise regarding the privacy policies or practices of any of Partners.


In the event we go through a business transition, including without limitation any merger, acquisition, partnership, business reorganization, debt finance, or sale of association assets, or in the event of an insolvency, bankruptcy, or receivership (together a “Business Transition”), we may use information collected in accordance with this Privacy Policy and subject to its restrictions, as part of any such Business Transition. In such instances, your information can be part of the assets transferred.

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5. Social media

If you click on our social media links (such as Twitter, Facebook, Instagram, YouTube, and LinkedIn), you will be directed to a third-party platform, and any information you share on those websites will be covered by their privacy policies, not this Privacy Policy.

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6. Cookies and other technologies

What are cookies?

A cookie is a small file that can be placed on your computer’s hard disk or on a website server. Cookies do not retrieve information stored on your hard drive and do not corrupt or damage your computer or computer files. For those using our Website, we may link cookie information to your email address to maintain and recall your preferences within the Website.

Why we use cookies

We may use cookies and similar tracking technologies to improve or administer the Website, analyze trends, track users’ movements around the Website, support security features on the Website, and to gather demographic information about our user base.

How to manage cookie preferences

Depending on their purpose, some cookies will only operate for the length of a single browsing session, while others have a longer life span to ensure that they fulfill their longer-term purposes. Your web browser can be set to allow you to control whether you will accept cookies or reject cookies, to notify you each time a cookie is sent to your browser, or to delete cookies that have already been set. If your browser is set to reject cookies, certain aspects of the Website that are cookie-enabled will not recognize you when you return to the Website, and some Website functionality may be lost. The “Help” section of your browser may tell you how to prevent your browser from accepting cookies. You can update your cookie preferences on our Website by clicking on the cookie settings link found on the bottom of every Website page.