NIH Policy for Sharing of Data Obtained in NIH supported or conducted Genomic Data Sharing Policy (GDS Policy) also referred to as the “GDS Policy” is published on the NIH GDS website. General questions about the GDS policy should be addressed to gds@mail.nih.gov.

The dbGaP data distribution is governed by the NIH GDS policy. There is some information about informed consent for genomic research on NHGRI website that may be useful to you. The following is how to get there:

From the NHGRI website, click on the “Issues in Genetics” tab and select “Informed Consent for Genomic Research”. The specific link that may be relevant is to this page.

When you write a manuscript and report data that

1. are based on the use of dbGaP study data, accessed and/or downloaded from the dbGaP web site (public pages for general and summary information or Authorized Access pages for subject-level data), please cite the USE of dbGaP study data in your manuscript by referencing the study accession (phs#), and the data use, and provide a link to the appropriate study page if at all possible, using a format like this:
   The data/analyses presented in the current publication are based on the use of study data downloaded from the dbGaP web site, under phsxxxxxx.vx.px (e.g. phs000001.v1.p1/https://dbgap.ncbi.nlm.nih.gov/beta/study/phs000001.v3.p1/?view=study);
   
   
2. are based on data that you uploaded to the dbGaP database, please reference the data upload using a format like this:
   
   The data/analyses presented in the current publication have been deposited in and are available from the dbGaP database under dbGaP accession phsxxxxxx.vx.px (e.g. phs001233.v1.p1).
   

When you have used or deposited data of more than one dbGaP study, please reference each dbGaP study separately, e.g.:

• The data/analyses presented in the current publication are based on the use of study data downloaded from the dbGaP web site, under dbGaP accession e.g. phs000001.v1.p1, phs000002.v1.p1, phs000003.v1.p1;
  
  
• The data/analyses presented in the current publication have been deposited in and are available from the dbGaP database under dbGaP accession e.g. phs001233.v1.p1, phs001234.v1.p1.
  

When you are citing the dbGaP database in general, without reference to specific studies, please use a format like this: dbGaP/database of Genotypes and Phenotypes/ National Center for Biotechnology Information, National Library of Medicine (NCBI/NLM)/https://www.ncbi.nlm.nih.gov/gap
When appropriate, please add dbGaP references, e.g.:

• The NCBI dbGaP Database of Genotypes and Phenotypes. Mailman MD, Feolo M, Jin Y, Kimura M, Tryka K, Bagoutdinov R, Hao L,
• Kiang A, Paschall J, Phan L, Popova N, Pretel S, Ziyabari L, Lee M, Shao Y, Wang ZY, Sirotkin K, Ward M, Kholodov M, Zbicz K, Beck J, Kimelman M, Shevelev S, Preuss D, Yaschenko E, Graeff A, Ostell J, Sherry ST.
• Nat Genet. 2007 Oct; 39(10):1181-6.
• NCBI's Database of Genotypes and Phenotypes: dbGaP.
• Tryka KA, Hao L, Sturcke A, Jin Y, Wang ZY, Ziyabari L, Lee M, Popova N, Sharopova N, Kimura M, Feolo M.
• Nucleic Acids Res. 2014 Jan; 42 (Database issue): D975-9.

The questionnaires for the Bipolar disorder whole genome association study are public access documents, and you therefore do not need to apply for authorized access.

There are a number of different questionnaires associated with the Bipolar Disorder study. Use the following steps to find them:

1. Go to dbGaP's study page for the Whole Genome Association Study of Bipolar Disorder.
2. When you arrive at the study page, select the “Documents” tab from the series of tabs located under the study title, which will take you to the study's document page.
3. Look for the grey “Associated Documents” box located to the right. If you navigate through the folder structure in the box you will find all of the different documents for this study. (HINT: click on the file name rather than on the file icon).
4. There are a number of questionnaires under the "Cases" folder, and there is a single questionnaire under the "Controls" folder.

These documents can also be downloaded from the dbGaP GAIN Bipolar Disorder public FTP site. You can find the link to this FTP site on the study home page: under the "Access to Publicly Available Data (Public ftp)" section of the page.

As the documents on the FTP site are organized by their accession numbers only, in order to retrieve the documents you want from the FTP site, you will have to note down the document's accession number as you review the document in the document section of the study page. The accession number is located in the “Document Name and Accession” section (the first section under the title) of a document's web description. The accession number always starts with “phd”.

Please note that in the case of large questionnaires, you will have to download a series of xml files and their related images.

Due to the findings in the Homer et al, aggregate level data are no longer available through the dbGaP public ftp site. The data are only available via the dbGaP Authorized Access System together with the individual level data. NIH has recently implemented a new process for accessing certain aggregate datasets designated as general research use (GRU) through a single request for the dbGaP study phs000501 (Compilation of Aggregate Genomic Data Study), the data requests of which will be reviewed by the Central Data Access Committee (CDAC).

For additional information about the new process and how to request access to the compilation of aggregate data, please see here.

Prior to an embargo release date there is a restriction on the permission of public discussion — including manuscripts, posters, abstracts and presentations — of the data, which allows the data provider time to publish their findings.

Summary level allele frequencies and phenotype distributions are not subject to embargo release dates, however, summary level analyses, such as the provisional QC analyses ARE subject to embargo release dates.

Many dbGaP datasets are available prior to the embargo release date. When authorized to do so, you may download and analyze the controlled access data prior to the embargo release date; however, you are not permitted to publicly discuss your findings as described in the signed Data Use Certification (DUC) that is part of the application process.

You must have an institutional affiliation and research credentials to request individual level human data from dbGaP.