Acceptance of HCP Open Access Data Use Terms is required for access to all HCP data, and will grant the user access to HCP imaging and most behavioral data. Users will be prompted to accept the Data Use Terms upon initial login to ConnectomeDB.
Some data elements, including family structure (e.g. whether a participant is a twin or a non-twin sibling), exact age, handedness, ethnicity and race (see Restricted Data application form for the full list of elements), are available only to qualified investigators who agree to HCP’s Restricted Data Use Terms. Applications for access to Restricted Data must be submitted by every investigator who will view and use the data (i.e. each member of a research group using the data must apply, from PI to trainees), will be processed individually, and approval is on a case-by-case basis.
An investigator who uses Restricted Data takes on a serious responsibility to protect the privacy of HCP subjects. Specifically, if you are given access to these data, you MUST abide by a prohibition against publishing certain types of individual data in combination that could make a person individually recognizable, or that could harm and embarrass someone who was inadvertently identified. The specifics of how Restricted Data can be published are detailed in the Restricted Data Use Terms and application (Updated Jan 26, 2016), which qualified investigators must fill out, sign and submit to the HCP.
To provide guidance to investigators, we have developed the following examples to illustrate types of information that can and cannot be published under the conditions that are delineated in the Restricted Data Use Terms. These examples also illustrate how our data use policy aims to protect subject identity without substantially impeding scientific communication. If you have either general or specific questions, or if you have additional use case scenarios that would be instructive to consider, please communicate these to Dr. Sandra Curtiss (firstname.lastname@example.org, HCP Project Manager), who will respond directly and potentially add appropriate use cases to this website.
Dr. X, an investigator who qualifies for restricted HCP data access, compares cortical folding patterns in HCP identical twins, non-identical twins, and non-twin sibs. She discovers that folding patterns are more heritable in some regions than others. To make her case, she illustrates the findings using two figures, with Figure 1 showing group-average analyses and data, and Figure 2 showing folding patterns for individual subjects for exemplar identical twin pairs vs non-sib pairs. Figure 2 would necessarily include information about family structure. Under the Restricted Data Use Terms, Dr. X:
Qualified Investigator Dr. Y analyzes working memory responses (Z-statistics within a prefrontal ROI) in Task-fMRI scans as a function of age (by year). He finds a significant correlation and publishes a scatter-plot figure showing this correlation for the ~70 subjects from the HCP Q1 dataset. He is allowed to publish this scatter plot because, in the plot, age cannot be linked to individual subjects even though the values are plotted as Z-statistics by year for each individual. In another figure, Dr. Y shows individual-subject surface maps of working memory responses in four of these subjects. He may not report the age of individual subjects in the figure legend, or even the prefrontal Z-stat score for individual subjects in the legend (because this information would enable someone to look at the working memory scores of the individual subjects and infer, with high probability, their age by year). Under the Restricted Data Use Terms, Dr. Y:
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.