MacCHESS Data Sharing Policy

MacCHESS is committed to disseminating information about the resource and the work conducted here.

nih data sharing

The status of the facility, with particular emphasis on recent upgrades, is reported regularly in talks and posters at meetings including the CHESS Users’ Meeting, meetings of the NY Structural Biology Discussion Group, the Annual Meeting of the American Crystallographic Association, and the triennial meeting of the International Union of Crystallography. Particularly important upgrades are reported in publications in appropriate journals, such as the Journals of Applied Crystallography and Synchrotron Radiation. All such publications will be available from PubMed Central, as well as from the MacCHESS website. The site also contains current details regarding station capabilities, user access, user publications using data taken at MacCHESS, and much more. Also on the web are the site-specific parameters needed by data processing programs such as HKL2000 and XDS.

Software developed at MacCHESS is publicly available; for instance, the BioSAXS processing package RAW is on SourceForge and a local version of the Daresbury Laue processing software (59) is available on request email. How-to information about using the MacCHESS stations is found on the web site. Additional training for BioSAXS is provided by YouTube videos, as well as on sites developed for BioSAXS courses and workshops at MacCHESS and elsewhere. All users receive training in operating the station at which they will be working; for BioSAXS, standard protein samples are provided, and tutorials in using RAW include test data.

PROSPECTIVE USERS Preparing a Proposal MUST READ and ACKNOWLEDGE:

Data acquired by users at MacCHESS are the property of the users, who are responsible for making them public according to NIH policy, and to satisfy the requirements of any other funding agencies that may support them. Prospective users preparing a proposal for beam time will be required to acknowledge their responsibility for data sharing; the proposal will not be accepted without such acknowledgement.  MacCHESS retains copies of raw data for approximately six months in case a user needs to access them due to loss or corruption of the originals. There is an ongoing discussion about the desirability of archiving raw diffraction data permanently. If this archiving becomes required AND is to be done at the source rather than by the user, MacCHESS will comply with the recommendations of the structural biology community.

NIH Data Sharing Policy

Scientific research depends on the free flow of information and ideas. To ensure that future research can build on previous efforts and discoveries, the National Institutes of Health (NIH) has developed a data sharing policy that goes into effect beginning October 1, 2003,for applicants seeking NIH funding of $500,000 or more in direct costs in any one year.

The policy expects final research data, especially unique data, from NIH-supported research efforts to be made available toother investigators. It includes data from:·

  • Basic research
  • Clinical studies
  • Surveys
  • Other types of research

Data sharing applies to human subjects and laboratory research.In some instances, it may include data not produced with NIH funding but used in an NIH-supported activity.

Data Sharing Methods

Data sharing can be accomplished through:

  • Publishing−articles in scientific publications
  • Researcher’s Efforts−investigator responds directly to data requests (mailing a CD-ROM containing data or posting data on a Web site)
  • Data Enclave−controlled, secure environment in which eligible researchers can perform analyses using data resources·
  • Data Archive−place where machine-readable data are acquired, manipulated, documented, and distributed·
  • Mixed Mode−more than one version of a dataset, each providing a different level of access

When making data available, researchers cannot place limits on questions or methods nor require coauthorship as a condition for receiving data. Proper documentation is needed to ensure that others can use the dataset and to prevent misuse, misinterpretation, or confusion.

Privacy Concerns

Protecting the rights and privacy of human subjects should be the first priority of any researcher. Investigators, Institutional Review Boards, and research institutions have an obligation to protect participants’ rights and confidentiality. However, data sharing is possible without compromising these efforts because identifiers can be removed from data. In addition, data sharing agreements can be used to restrict the transfer of data to others and to require that data be used only for research purposes.Investigators also should take into consideration possible restrictions from local, State, and Federal laws, such as the Privacy Rule, a Federal regulation under the Health Insurance Portability and Accountability Act (HIPAA). There also may be proprietary information or patent issues when research is co-funded by private sources. Any restrictions should be discussed in the data sharing plan section of the funding application. Researchers should carefully plan the study design, informed consent documents, and structure of resulting dataset prior to initiating the study.

Timeframe for Data Sharing

Data sharing should be timely and no later than the acceptance for publication of the main findings from the final dataset. Data from large studies can be released in waves as data become available or as they are published.