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INFORMATION ABOUT PRIVACY OF BRAIN DONORS AND THEIR FAMILY

Health information that identifies an individual is private under federal law; its handling is regulated according to the Health Insurance Portability and Accountability Act, was passed by Congress in 1996.

HBTRC staff is highly trained to follow this regulation, and several measures are in place to protect the confidentiality of brain donors and their families:


 

PARTNERS HEALTHCARE SYSTEM, INC. WEBSITE PRIVACY POLICY

Last revised: August 30, 2018

1. INTRODUCTION 

Purpose. The purpose of this Website Privacy Policy is to describe how Partners HealthCare System, Inc. and its affiliates (collectively, “Partners”) collects, uses and shares information about you through this website (the “Site”).  Please read this notice carefully to understand what we do. If you do not understand any aspects of our Website Privacy Policy, please feel free to Contact Us at CISPO@partners.org or as described in Section 7 of this Website Privacy Policy.

Scope; Third Party Sites.  This Website Privacy Policy applies only to information we collect at and through the Site.  Other sites owned by or affiliated with Partners are governed by their own separate privacy policies.  Our Site also contains links to third party sites that are not owned or controlled by Partners.  Please be aware that we are not responsible for the privacy practices of such other sites.  We encourage you to be aware when you leave our Site and to read the privacy statements of each and every website that collects personal information. 

Terms of Use. Please note that your use of our Site is also subject to our Terms and Conditions and Notice of Privacy Practices.

2. INFORMATION THAT WE COLLECT

Information You Provide to Us

We collect information you provide to us, for example when you create or modify your account, register to use our Site, purchase services from us, request information from us, contact customer support, or otherwise communicate with us. This information may include: 

Information We Collect Through Your Use of our Site

Google and Other Third Party Services

We may use web analytics and tag management services and tools service provided by Google, Inc. (“Google”) and other third parties to collect certain information relating to your use of the Site. Google Analytics uses “cookies”, which are text files placed on your computer, and tags (such as tracking codes and event codes) to help us analyze how users use the site. You can find out more about how Google uses data when you visit our Site by visiting “How Google uses data when you use our partners' sites or apps” (located at https://policies.google.com/privacy).

Information Collected Through Cookies and Similar Technologies

We and our service providers use cookies, web beacons, and other technologies to receive and store certain types of information whenever you interact with our Site through your computer or mobile device. A cookie is a small file containing a string of characters that is sent to your computer when you visit a website. When you visit the Site again, the cookie allows the Site to recognize your browser. Cookies may store unique identifiers, user preferences and other information. You can reset your browser to refuse all cookies or to indicate when a cookie is being sent. However, some Site features or services may not function properly without cookies. We use cookies to improve the quality of our service, including for storing user preferences, and tracking user trends.

No Information from Children Under Age 13

If you are under the age of 13, please do not attempt to register with us at this Site or provide any personal information about yourself to us.  If we learn that we have collected personal information from a child under the age of 13, we will promptly delete that information.  If you believe we have collected personal information from a child under the age of 13, please Contact Us CISPO@partners.org.

3. HOW WE USE AND SHARE YOUR INFORMATION

To Facilitate or Provide Services and Information. We collect information from you in order to facilitate or provide services that you request from us; register and service your online account; provide information that you request from us; contact you about your services requests; and process credit card transactions.

For Clinical Research.  We (and our researchers and affiliates) may collect, use and share information from you for the purposes of determining which clinical research opportunities may be of interest to you, contacting you to participate in research opportunities, or conducting clinical research as part of a research study in which you have agreed to participate as a research subject or researcher or in which your existing data is used, or providing information to you regarding research studies or medical information you have requested. 

Please note that not every research study will collect, use and share data in the same way.  In certain cases, you will be provided with a consent or authorization form relating to a specific research project that explains the types of information collected and the purposes for which the information is collected, used and shared. If you are provided with a consent or authorization form for a particular research study, the description of the collection, use or sharing of your information contained in such form shall apply to the specific study in question.

Sharing with Third Parties. We may provide information to third party service providers that help us operate and manage our Site, process services requests, and deliver services that you purchase through the Site. We may also provide information affiliated individuals and organizations providing professional medical services that you access through the Site. These service providers will have access to your personal information in order to provide these services, but when this occurs we implement reasonable contractual and technical protections to limit their use of that information to helping us provide the service.

Your Consent. In addition to the sharing described elsewhere in this Policy, we will share personal information with companies, organizations or individuals outside of Partners and its affiliates when we have your consent to do so.   By using our Site, you consent to the collection, use and sharing of this information as described in this Policy.

Legal Proceedings. We will share personal information with third party companies, organizations or individuals outside of Partners and its affiliates if we have a good-faith belief that access, use, preservation or disclosure of the information is reasonably necessary to:

Transfer in the Event of Sale or Change of Control. If the ownership of all or substantially all of our business changes or we otherwise transfer assets relating to our business or the Site to a third party, such as by merger, acquisition, bankruptcy proceeding or otherwise, we may transfer or sell your personal information to the new owner. In such a case, unless permitted otherwise by applicable law, your information would remain subject to the promises made in the applicable Website Privacy Policy unless you agree differently.

If you use our website and provide us with information, you understand and agree you understand and agree that your information may be transferred to and stored on servers located outside your resident jurisdiction and, to the extent you are a resident of a country other than the United States, that you consent to the transfer of such data to the United States for processing by us in accordance with this Privacy Policy

4. ACCESS TO YOUR INFORMATION AND CHOICES

If you have questions about personal information we have about you or need to update your information, you can Contact Us as described in Section 7 of this Website Privacy Policy.

5. SECURITY OF YOUR INFORMATION

We use industry standard physical, technical and administrative security measures and safeguards to protect the confidentiality and security of your personal information.  However, since the Internet is not a 100% secure environment, we cannot guarantee, ensure, or warrant the security of any information you transmit to us.  There is no guarantee that information may not be accessed, disclosed, altered, or destroyed by breach of any of our physical, technical, or managerial safeguards.  It is your responsibility to protect the security of your login information.  Please note that while communications and information you send to us using our Site are encrypted, e-mails and other communications you send to us outside of the Site are not encrypted. Thus, we strongly advise you not to communicate any confidential information through unencrypted email.

6. CHANGES TO OUR WEBSITE PRIVACY POLICY

Our Website Privacy Policy may change from time to time. We will not reduce your rights under this Website Privacy Policy without your consent in accordance with applicable law. We will post any Website Privacy Policy changes on this page and, if the changes are significant, we will provide a more prominent notice (including, for certain services, email notification of Website Privacy Policy changes).

7. QUESTIONS AND HOW TO CONTACT US

If you have any questions, concerns, complaints or suggestions regarding our Website Privacy Policy or otherwise need to contact us, please email us at CISPO@partners.org, call us at 1-800-856-1983, or contact us by US postal mail at the following address:

Partners HealthCare System, Inc.
399 Revolution Drive
Somerville, MA 02145
Attn: Chief Information Security and Privacy Officer

8. USERS IN THE EUROPEAN ECONOMIC AREA (EEA) AND SWITZERLAND

If you are a resident of the EEA or Switzerland, the following information applies with respect to personal data collected through your use of our Site.

Use of Website. If you use our website and provide us with information, you consent to the collection, use and sharing of this information as described in this Policy and you understand and agree you understand and agree that your information may be transferred to and stored on servers located outside your resident jurisdiction and, to the extent you are a resident of a country other than the United States, that you consent to the transfer of such data to the United States for processing by us in accordance with this Website Privacy Policy.

Purposes of processing and legal basis for processing: As explained above, we process personal data in various ways depending upon your use of the services. We process personal data on the following legal bases: (1) with your consent; (2) as necessary to provide the services; and (3) as necessary for our legitimate interests in providing the services where those interests do not override your fundamental rights and freedom related to data privacy.

Transfers: Personal data we collect may be transferred to, and stored and processed in, the United States or any other country in which we or our affiliates or processors maintain facilities. We will use reasonable efforts to ensure that transfers of personal data to a country or an international organization outside the EEA or Switzerland are subject to appropriate safeguards.

Your rights: You are entitled to the rights under Chapter III of the EU General Data Protection Regulation or Section 2 of the Swiss Federal Act on Data Protection with respect to the processing of your personal data, which include the right to access and rectify and to request erasure of personal data. In order to verify your identity, we may require you to provide us with personal information prior to accessing any records containing information about you.

Modified:  09-Oct-2018