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Frequently Asked Questions

Overview of the NHGRI Sample Repository for Human Genetic Research

  1. What is the NHGRI Sample Repository for Human Genetic Research? 
    The NHGRI Sample Repository for Human Genetic Research (NHGRI Repository) offers DNA samples and cell lines from people living around the world, including the samples used for the International HapMap Project,  the 1000 Genomes Project (except for CEPH samples), and the Human Pangenome Reference Consortium.

  2. What sample types are available?
    The NHGRI Repository offers lymphoblastoid cell lines (LCLs), induced pluripotent stem cells (iPSCs) and DNA samples extracted from these cell lines. 

  3. Who is eligible to receive samples?
    Cell lines and DNA samples are distributed to qualified professionals who are associated with recognized research, medical, educational, or industrial organizations engaged in research. 

  4. Where can I find the data associated with NHGRI Repository samples?
    The NHGRI Repository at Coriell is the sample repository for the International HapMap Project and the 1000 Genomes Project. Data associated with these samples can be found at the following project websites:

    1000 Genomes Project
    1000 Genomes Project website: https://www.internationalgenome.org/data

    Whole genome sequencing and RNA-Seq data collected from NHGRI Repository biospecimens can also be searched at the following website:
    https://catalog.coriell.org/1/Browse/Genomic-Data-Search

    Sample Use and Human Subjects

    1. What kind of research may be performed on samples obtained from the NHGRI Repository? 
      NHGRI Repository samples were contributed with consent to broad data release and to their use in many future studies, including for extensive genotyping and sequencing, gene expression and proteomics studies, and all other types of genetic variation research. The samples include no clinical information, and are high-quality resources for the study of genetic variation in humans.

    2. May samples from the NHGRI Repository be used for commercial purposes? 
      Samples obtained from the NHGRI Repository, and material derived from the samples, may not be used for commercial purposes, although knowledge gained from their use may be used. Please see the terms of use as outlined in the NHGRI Repository Assurance Form.

    3. Can leftover samples be shared with other investigators? 
      The NHGRI Repository has strict guidelines on secondary distribution and shared use of samples. It is not acceptable for investigators to give a portion of the DNA sample or cell culture to a colleague who is working on another project. In this case, secondary distribution is prohibited because this would make it difficult for the NHGRI Repository to monitor all the uses of the sample so that they can convey this information to the Community Advisory Group in the donor community as required by the informed consent form under which the sample was collected. The colleague must obtain the material directly from the NHGRI Repository. Please refer to this link for more information.

    4. Can leftover samples be used for an entirely different project? 
      Leftover samples can be used for a different project by the investigator who received the sample only after an updated Statement of Research Intent has been submitted to and approved by the NHGRI Repository at Coriell (please send requests to nhgri@coriell.org ). Investigators must still adhere to the terms of the Assurance Form under which the samples were requested. The NHGRI Repository must ensure the protection of human subjects and the quality of the samples. 

    Ordering Information

    1. How do I search for samples using the Coriell catalog?
      For more information on how to perform a generic catalog search to find a sample of interest, please click on the following link: Search Help. 

    2. How do I order samples from the NHGRI Repository?
      All orders for NHGRI Repository samples must be submitted using the online catalog. Customers must register online, and after their registration has been approved, they can request samples. Click the following link for detailed Ordering Instructions.

    3. What documents are required to order samples?
      There are two requirements for ordering biomaterials from the NHGRI Repository to ensure compliance with the Office for Human Research Protections (OHRP), Department of Health and Human Services (DHHS) regulations for the protection of human subjects (45 CFR Part 46):

      • A Statement of Research Intent with a description of the research to be done with the cell lines or DNA samples must be provided to the NHGRI Repository. In the Statement of Research Intent, there must be a declaration if there is interest SECONDARY DISTRIBUTION OR SHARED USE of DNA or cell lines. This research intent is submitted electronically via the online catalog at the time the order is placed. For an example of the information that will be asked at the time of order, please refer to this link.

      • The Assurance Form, which details the terms and conditions of sample usage, must be signed by the principal investigator and an institutional official who can make legal commitments on behalf of the institution.

        • The Principal Investigator should be the person responsible for the NHGRI Repository Sample(s), the conduct of the Statement of Research Intent, and possesses the authority to enforce all guidelines and requirements included in the MTA. The Principal Investigator supervises the research team performing the work. At an academic institution, the Principal Investigator will typically hold the rank of Assistant, Associate, or Full Professor. At a commercial, for-profit institution, the PI should be a staff scientist or a scientist at the Director-level or higher.
        • The Institutional Official should be an individual who can make legally binding commitments, and is usually a senior institutional official (for example President, Vice President, Chief Operating Officer, Chief Executive Officer, Chief Scientific Officer, General Counsel or Director of Research) with responsibility for scientific and technological research and development or legal affairs. This individual is likely to be a signing official or the person authorized to sign grant applications, contracts or material transfer agreements on behalf of the institution.

      • The signed Assurance Form must be submitted by email to customerservice@coriell.org before an order can be reviewed and approved. 

    4. Are sample discounts available?
      The NHGRI Repository recognizes that the value of these samples can be realized only when the cost of access is reasonable. They are committed to ensuring samples are distributed at a low and reasonable cost. The NHGRI Repository offers discounts in the following circumstances:

      • In order to facilitate the use of these samples by scientists from developing countries, the National Human Genome Research Institute/National Institutes of Health (NHGRI/NIH) will allow scientists from countries listed in bands 1 and 2 of the World Health Organization's Health InterNetwork Access to Research Initiative to purchase DNA samples and cell lines at a reduced rate of 25% (a 75% discount) of the catalog price.

    How to Cite Repository in Publications

    1. How should investigators cite the samples in publications?
      The NHGRI Sample Repository for Human Genetic Research number(s) of the cell line(s) or the DNA sample(s) must be cited as follows in publications or presentations that are based on the use of these materials:
      "The following cell lines/DNA samples were obtained from the NHGRI Sample Repository for Human Genetic Research at the Coriell Institute for Medical Research: [list Repository ID numbers here]. "

    2. How should investigators cite the populations in publications?
      It is important to use care in labeling the populations when publishing or presenting the findings of studies that used the samples. Please adhere to the guidelines listed at the following link: Guidelines When Referring to Populations.

    3. Why do I have to report publications?
      Please refer to the following link for more information: Information for Investigators. Donors of the NHGRI Repository samples understand that the full value of the resources developed with their samples can be realized only if the samples remain widely available for research that builds on these resources. Some research with these samples, however, may carry the potential for group stigmatization or other ethical concerns.

      Donors and members of the communities participating in the HapMap and 1000 Genomes Projects are very interested in staying informed about the uses of their samples. In recognition of the importance of keeping the donor communities apprised of how their samples are being used, the NHGRI Repository team sends each donor community a quarterly report that lists the investigators who have requested their samples during that quarter and the nature of the research. The communities are also informed when major papers result from research with their samples.

      It is the policy of the NHGRI Repository that an entire donor community, through its CAG, could decide (after careful discussion) to withdraw its samples from the Repository, if it were determined that the community's samples were being used in a manner inconsistent with the wishes of most of the members of that community. Although this would be expected to occur only rarely and after extensive discussions, it might occur based on a use of the samples that the community found unacceptable or stigmatizing. According communities a right to withdraw their samples in this manner is consistent with contemporary standards of research ethics for genetic variation research that involves identified populations (See "Integrating ethics and science in the International HapMap Project." (2004) Nat Rev Genet. 5:467-75. PMID: 15153999).

      Investigators who use these samples are asked to be sensitive to the possible implications of their research for the sample donors and their communities and populations. Investigators should describe their study results with care and attention to the potential broader implications of their research. Investigators should adhere to the Guidelines for Referring to Populations in Publications and Presentations .

      Investigators should notify the NHGRI Repository (nhgri@coriell.org) of any publications resulting from the use of the samples; a biannual reminder will be sent out requesting this information. These measures will help to protect not only the donor communities but also the sample collections and the integrity and long-term viability of the Repository resource.

    4. Why do I have to fill out a survey?
      The National Human Genome Research Institute (NHGRI) requires that customers who receive samples from the NHGRI Repository fill out a customer survey every 2 years. The information collected from the survey is used to better serve the sample donor communities.