The WU-Minn HCP Consortium requires that the following Data Use Terms be signed, submitted and approved for investigators to receive access to Restricted Data generated by HCP. Given the distinctive family structure of the HCP population under study (twins and their non-twin siblings), these special precautions are essential in order to protect the privacy of our subjects and to prevent any inappropriate disclosure of subject identity.
A. Definitions of Restricted Data Elements covered by these terms:
- Family structure. Family structure (e.g., relationships as twins or non-twin siblings, but excluding birth order) is a core type of information that will be used for heritability analyses.
- Additional Restricted Data Elements: Given the population from which HCP subjects are drawn, some data elements in the Restricted Data, if used in combination with one another or with family structure information, could increase the risk that individual research subjects could be identified. Alternatively, some data elements might harm or embarrass individuals if they were inadvertently disclosed. These data elements are:
- Subject age by any finer granularity than the 5-year age ranges included in the Open Access Data
- Birth order
- Ethnicity and/or race
- Body weight, height, and BMI
- Color vision and visual correction measures
- All data from the SSAGA telephone diagnostic interview
- Drug test results
- HbA1c and TSH results
- Information on endocrine disorders and age of onset
- Any psychiatric and neurologic illnesses of subjects’ parents
Important: See section C for information on how these data elements may and may not be used in publications
B. Who Can Obtain Access:
Investigators are expected to meet one of the following criteria to be qualified to receive access to HCP Restricted Data:
- You are a Principal Investigator (PI) of scientific research at a university, a research organization (including commercial entities) or a government agency who is the leader of a laboratory or research team or who is working independently; or
- You provide the name of the PI who is overseeing your research and is approved for access under #1.
- If you do not meet either of the above criteria you may be considered qualified based on a track record of scientific publications or on the basis of a written reference from someone who meets qualification #1, verifying that the data will be used only for the purpose of legitimate scientific research.
C. Obligations of Investigators
IN ADDITION TO the rules an investigator must accept in the Open Access Data Use Terms, to protect the privacy of HCP subjects one must agree to abide by the following terms. Example scenarios illustrating these terms can be found at:
- You must be a Principal Investigator, or be working for one, as specified in points B1 and B2. If you are not a PI, we must receive an application from your PI before we can process your application.
- You must not redistribute or share Restricted Data with others, including individuals in my laboratory, unless they have independently applied and been granted access to the Restricted Data by the HCP.
- You must keep the Restricted Data secure (password protected, such the data are only accessible to individuals who have already been granted access).
- Restrictions on publishing Restricted Data elements for individual subjects. It is imperative that individual subjects not be recognizable to their family members or others through publication of combinations of restricted access data elements, either within or across publications. Therefore, you must abide by the following:
- No reporting of HCP Subject ID numbers when publishing or publicly reporting analyses that use Restricted Data. You must not include any HCP-assigned subject IDs in any publication or public presentation that makes use of Restricted Data from individual subjects. You must instead assign my own study-specific subject IDs to each individual, e.g. subjects A, B, C, etc.
- Family structure is the ONLY Restricted Data element that can be reported for individual subjects in a publication or public presentation. As stipulated in 4a., when reporting family structure of subjects, individuals must be assigned study-specific subject IDs.
- If I publish data analyzed using Additional Restricted Data elements (including handedness, exact age, ethnicity, race, body weight, and all other types listed in section A.2), each reported analysis must be based on at least 3 subjects, and the presentation of the data must not reveal the study-specific subject ID associated with any particular data point or value.
- Sharing of investigator-assigned subject ID numbers with other users of the Restricted Data. Upon acceptance of each publication in which individual HCP data is reported, you must submit to HCP a key or legend that maps my investigator-assigned subject IDs to the corresponding HCP subject IDs, by following instructions given at
http://www.humanconnectome.org/data/key/. This study-specific information will be made available to the community of HCP Restricted Data users, so that other investigators can better interpret my published findings. You must not publish this code or make it available independent of the HCP’s distribution mechanism.
- I will comply with all relevant rules and regulations imposed by my institution. This may mean that I need my research to be approved by a committee that oversees research on human subjects, e.g. my IRB or Ethics Committee. The released HCP data are not considered de-identified, insofar as certain combinations of HCP Restricted Data might allow identification of individuals. Different committees operate under different national, state and local laws and may interpret regulations differently, so it is important to ask about this . If needed and upon request, the HCP will provide a certificate stating that you have accepted the HCP Restricted Data Use Terms.
- You affirm that you will use the Restricted Data exclusively for the purpose of scientific research, technology development, or education under the auspices of an academic, research, government or commercial entity.
- I agree to provide additional specific justification if requested before being granted access to any Restricted Data Elements judged by the HCP to warrant special handling (e.g. drug test results).
- You also understand and have accepted the provisions in the Open Access Data Use Terms.
- You agree to delete specific HCP datasets if requested to do so by HCP Principal Investigator David Van Essen, e.g., if certain released datasets are found to have identifying information inadvertently included.
- You understand that failure to abide by these rules may result in termination of your privileges to access WU-Minn HCP data. In addition, inappropriate use, redistribution or publication of restricted access data, including any actions that may violate the privacy of HCP subjects, may lead to HCP taking other actions against you, including informing your institution, relevant journal(s), and relevant funding agencies.
Additional Applicant Information
Investigators who wish to qualify for access to Restricted Data under the provisions of section B.3 (above) should send citations of selected scientific publications and/or the name of the PI who will be providing a letter of reference as outlined in B.3 to Dr. Sandra Curtiss at email@example.com.