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:
- The Staff at the HBTRC will assign a code number to the tissue and health information. The donor's name, medical record number, or other identifiable information will not be stored with the tissue or health information. The key to the code that connects the name and other identifiers to the tissue and information will be stored securely in a separate file.
- The coded tissue and health information may be shared with researchers to carry out studies on the human brain and on brain disorders. We will not share information that identifies the donors with researchers.
- In order to allow researchers to share research results, agencies such as the National Institutes of Health (NIH) have developed secure banks that collect and store research samples and/or health information. The HBTRC will share potentially identifiable health information (e.g. date of birth, date of death, dates of admission to hospitals) with the national institutes of health (NIH; NIMH, NICHD, and NINDS brain and tissue repository, Neurobiobank). The central banks may share these samples or information with other qualified and approved researchers to do more studies. Results or samples given to the central banks will not contain information that directly identifies the donor. There are many safeguards in place at these banks to protect the donor's privacy.
(NOTE: Opt-out options are discussed in the sections entitled "Cookies, Tracking and Internet-based Advertising".)
Information That We Collect
You may use our website without providing any personal information. When you reply to any of our communications with a request, we may need to collect additional information. For example, you may be asked to provide personal information, such as name, email address, and demographic information if you choose to complete an online form or provide feedback.
Mass General Brigham is committed to protecting the privacy of the personal information you provide to us via this website so that we can make sure it remains as secure as possible. Accordingly, we use reasonable efforts to prevent unauthorized access. We use a secure firewall and a security infrastructure that protects the integrity and privacy of personal information submitted to us via this website. As an additional security measure, your personal information is also encrypted during transmission using appropriate technology including Transport Layer Security. This is an industry standard. (Encryption is a common method used to protect transmission of sensitive data across the Internet.)
Although we work hard to protect your personal information, Mass General Brigham cannot guarantee the security of any information you transmit to us through online applications, and you do so at your own risk. Depending on the nature of the inquiry, your communication could be discarded or archived. If you wish, you can contact us instead by telephone at the numbers provided throughout our Websites.
Cookies, Tracking and Internet-based Advertising
This website works with third-party products or services ("Service Providers"). These include Google and other Service Providers who help us track and analyze visitor activity on the website, measure the effectiveness of our advertising efforts, and support the optimization of our digital marketing campaigns.
The website uses "cookies," tracking pixels and related technologies. These can be set by Mass General Brigham or by our Service Providers.
Cookies are small data files that online services can store on, and retrieve from, a user's computer or mobile device through the user's web browser. The information is stored and retrievable either for the duration of a website visit (known as "session cookies"), or until some later point in time set by the website setting the cookie (known as "persistent cookies"). Examples of information we and our Service Providers collect include how often someone visits this website and what they do while on the website. We and our Service Providers use this information in the aggregate to understand how our visitors as a group use different resources and to help us improve our website. We and our Service Providers also collect information about the activity of individual website users. This information may be used to direct related Mass General Brigham advertisements and/or informational content to website users when they visit other websites.
Most internet browsers accept cookies by default, but you can modify your browser preferences to block or restrict cookies if you do not want your web browsing activity tracked. There are a variety of tools publicly available to manage cookies and similar technologies that collect information related to your use of the website. Learn more from (i) the FTC or (ii) the Digital Advertising Alliance opt-out page, which allows users to opt out from receiving interest-based advertising.
We are not responsible for the effectiveness or compliance of third party opt-out mechanisms or programs. Please note that if you delete your cookies or upgrade your browser after having opted out, you will need to opt out again. Further, if you use multiple browsers or devices you will need to opt out on each browser or device. You can access the information on this website without enabling cookies in your browser but disabling cookies may result in a diminished ability to take advantage of the services and related informational content on the website. We use web analytics and tag management services and tools provided by Google and other third parties to collect certain information relating to your use of this website. You can find out more about how Google uses data when you visit our website by visiting "How Google uses data when you use our partners' sites or apps."
Our Service Providers may acquire additional information about your activity on our website, including pages you visit, access times, visit duration, how you arrived at our website and your IP address. An IP address is a number that identifies a device connected to the Internet. For most devices, the IP address changes on at least a weekly basis. Our Service Providers may also acquire device identifiers and specific information about the browser you use. In some cases, this information may be unique to you.
How We Use This Information
Mass General Brigham uses the information you provide to fulfill online requests, process credit card information and respond to customer service inquiries, or in other ways as required by law.
We may use your information to:
- Help us improve the services we offer
- Personalize your experience and inform you about the treatments/services in which you have indicated an interest
- Tailor digital advertisements on third-party websites based on your interactions on our website
- Improve our website offerings and send you information and updates
- Respond to your questions and requests and improve customer service
- Administer a promotion, survey or other site feature
In some cases, third parties contracted by Mass General Brigham may have access to your information to perform a specific task, for example, to send you an e-newsletter.
Users in the European Economic Area (EEA) and Switzerland
EEA or Switzerland residents 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 personal data, which includes the right to access, rectify and request erasure of personal data. Please contact us with your request. 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.
Third-Party Vendors/ Content Providers
Mass General Brigham shares information with third parties, including as required by law or in order to provide the services requested. Mass General Brigham engages reputable third-party vendors to help us manage this website, provide content and information, and interact better with our patients and visitors.
Transfer in the Event of Sale or Change of Control
Please do not provide personal information via email to us unless it is through a secure channel (these will be marked, as secure online forms, for example). Remember that email messages, unless encrypted while in transit, can be viewed by other Internet users. If you have personal information to communicate, please use the appropriate secure online form or contact the necessary party using traditional means such as phone or mail.
If you receive an email that looks like it is from Mass General Brigham and asks for your personal information, do not respond. This may be a scam or "Phishing" email intended to steal your information. Mass General Brigham will never request your password, user name, credit card information or other personal information through email.
Links to External Websites
Changes to This Policy
May 19, 2020