Rare Genomics Privacy Statement
March 3, 2021
1. Introduction
Welcome to Rare Genomics. Rare Genomics (“us”, “we”, or “our”) operates www.raregenomics.org. Our Privacy Policy governs your visit to www.raregenomics.org and explains how we collect, safeguard and disclose information that results from your use of our services we may provide you or patients for which you serve as a legal guardian.
2. Information/Data Collection
We collect several different types of information for various purposes to provide and improve our service to you. Most of the information we receive comes directly from the patient or guardian. The types of information we collect falls into three categories; contact information, demographic information, and medical information (this includes genetic information) which may be qualified as personally identifiable information (“Personal Data”). Additionally, we collect information through cookies. Please see our Cookie Policy for further information
A prospective patient or their guardian will begin by completing the Rare Genomics Institute Patient Application Form, Informed Consent Form and/or other, similar documents, through which we collect relevant data from you. We request contact, demographic and/or general medical information to determine if we can assist the patient. In some cases, this information is shared with professionals working with Rare Genomics for the purposes of understanding cases, designing studies, and other uses related to the patients. With the patient and/or their guardian’s permission, we may collect and store medical records and genetic sequencing files using external applications, such as Patient Knows Best (PKB), as necessary. Medical and/or genomic sequencing information may be released to and collected by Rare Genomics through the Informed Consent Form. As the patient proceeds through our services, further information will be collected through communications with the patient or guardian, and any third parties that have been engaged to assist the patient. Typically, this will include medical (including genetic) information.
We may also provide a Newsletter and other communications which may require separate sign ups. Also, we operate a social network called RareShare that has its own separate sign up, terms of service and privacy policy. You may opt out of receiving any, or all, of these communications from us by following the unsubscribe link in the applicable emails sent by us.
3. Use of Data
Rare Genomics may use the collected data for any or all of the following:
to provide and maintain our services;
to notify you about changes to our services;
to monitor the usage of our services;
to detect, prevent and address technical issues;
to fulfill any other purposes for which you provide it;
to provide you with general information about other services and events which we offer that may be relevant to you (unless you have opted not to receive such information);
in any other way we may describe when you provide the information;
In addition, Rare Genomics may share your information with general service providers of Rare Genomics as necessary for storage of your data as well as IT, operational and/or security purposes. Also, Rare Genomics may share your information as necessary by applicable legal or regulatory process.
If a patient elects to use Rare Genomics Patient Research Services, Rare Genomics may share the patient’s information (including medical records and/or genomic sequencing information) with employees and volunteers within the organization, along with collaborators and service providers outside the organization for the specific purpose of understanding the individual patient’s case.
Rare Genomics will not share your information for broader research or charitable purposes, or commercial purposes, without your permission to do so through Rare Genomics’ Informed Consent Form.
It is important to note that this additional consent is not required to receive our help and can be withdrawn at any time; however, it is important to understand that it may not be possible to retrieve and/or delete any information already shared.
4. Retention of Data
We will retain your Personal Data only for as long as is necessary for the purposes set out in this privacy policy and in order to comply with our legal obligations (for example, if we are required to retain your data to comply with applicable laws), resolve disputes, and enforce our legal agreements and policies.
5. Security of Data
The security of your data is important to us but remember that no method of transmissions over the Internet or method of electronic storage is 100% secure. While we strive to use commercially reasonable means to protect your Personal Data, we cannot guarantee its absolute security.
6. How can I review, update, or delete information about me?
To assist the patient, we provide the following options:
The patient or guardian may request a copy of the information held by Rare Genomics.
The patient or guardian may update the information held by Rare Genomics.
The patient or guardian may ask for the information held by Rare Genomics to be deleted.
This can be done by contacting the Patient Advocate (if assigned) or using the Contact US section of our website.
7. Transfer of Data
We may transfer to, and store the data we collect about you, in countries other than the country in which the data was originally collected, including the United States, Canada or other destinations outside the United Kingdom (or otherwise outside the European Economic Area) (“EEA”). Those countries may not have the same data protection laws as the country in which you provided the data. When we transfer your data to other countries, we will protect the data as described in this privacy policy and comply with applicable legal requirements providing adequate protection for the transfer of data to countries outside the EEA.
8. Your Data Protection Rights Under General Data Protection Regulation (GDPR)
If you are a resident of the European Union and EEA, you have certain data protection rights, covered by the GDPR.
We aim to take reasonable steps to allow you to correct, amend, delete, or limit the use of your Personal Data.
If you wish to be informed what Personal Data we hold about you and if you want it to be removed from our systems, please contact us by using the Contact US section of our website.
In certain circumstances, you may have the following data protection rights:
the right to access, update or to delete the information we have on you;
the right of rectification. You have the right to have your information rectified if that information is inaccurate or incomplete;
the right to object. You have the right to object to our processing of your Personal Data;
the right of restriction. You have the right to request that we restrict the processing of your Personal Data;
the right to data portability. You have the right to be provided with a copy of your Personal Data in a structured, machine-readable and commonly used format;
the right to withdraw consent. You also have the right to withdraw your consent at any time where we rely on your consent to process your Personal Data;
Please note that we may ask you to verify your identity before responding to such requests. Please note, we may not be able to provide our services without some necessary data. Please also note that changing or limiting the Personal Data you are providing to us may affect or limit our ability to provide you with our services.
You can raise any comments or concerns with us directly using the Contact US section of our website. If you are an EU/EEA Data Subject and have a concern about our practices concerning the processing of Personal Data that we are not able to resolve, you have the right to file a complaint with the data protection authority where you reside or in which you work, or in which the alleged infringement occurred
9. Special data protection provisions for California Residents - California Privacy Protection Act (CalOPPA) and California Consumer Privacy Act (CCPA)
If you are a resident of the State of California, in addition to any right enumerated in this privacy policy, you may have the following additional data protection rights, covered by the CalOPPA and the CCPA:
you can visit our site anonymously;Our privacy policy includes the word ‘Privacy’ and can easily be found on our home page;
you will be notified of any privacy policy changes on our privacy policy page;
you are able to control, change or delete your Personal Data by using the Contact US section of our website.
Our Policy on “Do Not Track” Signals.
California law requires us to let you know how we respond to web browser Do Not Track (DNT) signals. However, because there currently isn't an industry or legal standard for recognizing or honoring DNT signals, we don't respond to them at this time. We await the result of work by the privacy community and industry to determine when such a response is appropriate and what form it should take in which event we will update our privacy policy and notify you thereof.
right to know. You are entitled to learn what data we collect about you, ask to delete your data and not to sell (share) it. To exercise your data protection rights, you can make certain requests and ask us:
What Personal Data we have about you. If you make this request, we will return to you:
The categories of Personal Data we have collected about you;
The categories of sources from which we collect your Personal Data;
The categories of third parties with whom we share Personal Data;
The specific pieces of Personal Data we have collected about you.
Please note that you are entitled to ask us to provide you with this information up to two times in a rolling 12 months period. When you make this request, the information provided may be limited to the Personal Data we collected about you in the previous 12 months.
To delete your Personal Data. If you make this request, we will delete the Personal Data we hold about you as of the date of your request from our records and direct any service providers to do the same. In some cases, deletion may be accomplished through de-identification of the information.
To stop selling your Personal Data. We don’t sell or rent your Personal Data to any third parties for any purpose. We do not sell your Personal Data for monetary consideration. However, under some circumstances, a transfer of Personal Data to a third party, or within our family of companies, without monetary consideration may be considered a “sale” under California law. You are the only owner of your Personal Data and can request disclosure or deletion at any time.
If you submit a request to stop selling your Personal Data, we will stop making such transfers.
Please note that changing or limiting the Personal Data you are providing to us may affect or limit our ability to provide you with our services. However, we will not, under any circumstance, discriminate against you for exercising your rights.
To exercise your California data protection rights described above, please contact us by using the Contact US section of our website.
10. Links to Other Sites
Our services may contain links to other sites that are not operated by us. If you click a third-party link, you will be directed to that third party’s site. We strongly advise you to review the privacy policy of every site you visit. We have no control over and assume no responsibility for the content, privacy policies or practices of any third-party sites or services.
11. Changes to This Privacy Policy
We may update our privacy policy from time to time. You are advised to review this privacy policy periodically for any changes. Changes to this privacy policy are effective when they are posted on this page.
12. Disclaimer
NOTHING HEREIN, OR IN ANY INTERACTION WITH US CAN OR SHOULD BE CONSTRUED AS MEDICAL ADVICE OR A DIAGNOSTIC TEST AND CANNOT SUBSTITUTE FOR A MEDICAL TEST OR MEDICAL ADVICE BY A LICENSED PHYSICIAN. WE ARE A RESEARCH ORGANIZATION THAT HELPS PHYSICIANS BY COMPARING CERTAIN LABORATORY FINDINGS TO SCIENTIFIC FINDINGS AND LITERATURE. OUR ANALYSIS IS OFFERED FOR INFORMATIONAL AND EDUCATIONAL PURPOSES ONLY. WE INTEND SOLELY FOR OUR ANALYSIS TO POTENTIALLY OPEN UP PROSPECTIVE LEADS THAT CAN BE PURSUED IN CONSULTATION WITH YOUR PHYSICIAN. WE DO NOT PROVIDE MEDICAL ADVICE AND NO DOCTOR PATIENT RELATIONSHIP IS CREATED WHEN YOU USE OUR SERVICE. PLEASE DO NOT USE THIS SERVICE IN LIEU OF SEEKING PROFESSIONAL MEDICAL ADVICE. INDIVIDUALS SHOULD NOT ACT UPON ANY INFORMATION LEARNED FROM OUR ANALYSIS WITHOUT FIRST SEEKING PROFESSIONAL MEDICAL ADVICE. THEREFORE, WE DO NOT GUARANTEE THAT THE SERVICE OR CONTENT OF THE TEST WILL MEET YOUR REQUIREMENTS.
TO THE MAXIMUM EXTENT PERMITTED BY LAW:
(A) ANY INFORMATION INCLUDED ON OR PROVIDED THROUGH OUR SERVICE IS ON AN "AS IS" BASIS, WITHOUT WARRANTY OF ANY KIND, EXPRESS, STATUTORY, OR IMPLIED;
(B) WE WILL NOT BE LIABLE FOR ANY INDIRECT, INCIDENTAL, SPECIAL, EXEMPLARY, OR CONSEQUENTIAL DAMAGES, HOWEVER CAUSED, WHETHER IN CONTRACT OR TORT, ARISING FROM OR IN CONNECTION WITH OUR SERVICE OR CONTENT;
(C) OUR TOTAL CUMULATIVE LIABILITY IN CONNECTION WITH OUR SERVICES OR CONTENT PROVIDED, WHETHER IN CONTRACT OR TORT, WILL NOT EXCEED $100.
EFFECTIVE DATE: MARCH 3, 2020