Data Use Terms
The HCP provides imaging, behavioral, and demographic data from a large population of healthy adults. This poses special challenges for protecting the privacy of participants, especially because it is a family study including twins and their siblings. Unless these data are properly managed, there is a risk that participants might be recognizable to family members and others. In addition, some of the data elements collected might harm or embarrass participants if they were to be inadvertently identified.
To protect the privacy of our participants, the HCP has implemented a two-tiered plan for data sharing, with different provisions for handling Open Access data and Restricted Data.
Open Access Data (all imaging data and most of the behavioral data) is available to those who register an account at ConnectomeDB and agree to the Open Access Data Use Terms. This includes agreement to comply with institutional rules and regulations.
This means you may need the approval of your IRB or Ethics Committee to use the data. The released HCP data are not considered de-identified, since certain combinations of HCP Restricted Data (available through a separate process) might allow identification of individuals. Different national, state and local laws may apply and be interpreted differently, so it is important that you consult with your IRB or Ethics Committee before beginning your research. If needed and upon request, the HCP will provide a certificate stating that you have accepted the HCP Open Access Data Use Terms.
Please note that everyone who works with HCP open access data must review and agree to these terms, including those who are accessing shared copies of this data. If you are sharing HCP Open Access data, please advise your co-researchers that they must register with ConnectomeDB and agree to these terms.
Restricted Data Elements include a number of categories, such as family structure (twin or non-twin status), age by year, and handedness.
Each qualified investigator wanting to use Restricted Data must agree to the Restricted Data Use Terms. These terms explain how Restricted Data may and may not be used and shared, and they reiterate the need for compliance with institutional requirements. They include major limitations on how Restricted Data can be incorporated into publications and public presentations.
You must comply with your institutional rules and regulations regarding research on human subjects. The released HCP data are not considered de-identified, since certain combinations of HCP Restricted Data might allow identification of individuals. Different national, state and local laws may apply and be interpreted differently, so it is important that you consult with your IRB or Ethics Committee before beginning your research. If needed and upon request, the HCP will provide a certificate stating that you have accepted the HCP Open and Restricted Access Data Use Terms.
The member universities of the Human Connectome Project take privacy very seriously, whether dealing with participant data or the data of those visiting this website.
The participant data from our research into the Human Connectome that is stored in our XNAT server is de-identified, and contains no personal health information (PHI).
Our website collects names and email addresses via our contact form. This information is used solely by the administrators and members of the HCP website and is not shared, traded or sold to third parties under any circumstances.
Our website may also collect non-personal data about site visits, sessions, and IP addresses. This information is only used for diagnostic or debugging purposes, to help us optimize our website's performance, and is not shared externally. This is a standard practice for most websites, and this data is never linked with personally identifiable information.
This website contains links to other websites whose content we think is relevant. However, the HCP website is not responsible for maintaining or updating the content of these other sites. If any of these sites are found to contain irrelevant or offensive information, please contact us.