Sensitive Research Data Management: Decisions about Data Sharing

Considerations for sharing sensitive research data

Sharing sensitive data requires additional consideration but can generally be accomplished with planning and careful data practices.

• Is sharing data required (or prohibited) by your sponsor or funding agency?

Increasingly, funding agencies are requiring grant proposals to include a data management plan and address how data from the proposed research will be shared with others outside of the research team.  Meeting these requirements for research involving sensitive data can be challenging as additional consideration and care must be given to decisions on how to share this data in ways that do not place subjects at risk.  Researchers should read the documentation produced on data management and sharing requirements carefully, paying close attention to any statements on sensitive data.  If sensitive data are not mentioned directly or explained clearly in the documentation, ask your program officer for guidance.  Be sure that you understand what you are required to do (or not do) by your funding agency before developing a plan or taking any action.  

• Is sharing data supported by your research communities and/or publishers?

Sharing data is becoming commonplace in many disciplines and resources to support data are being developed in response.  In addition to contributing to your research community, releasing data sets for reuse by other researchers could help your career. A well constructed and reused data set can generate more citations and reputation within a research community than a journal article (Piwowar, Day, & Fridsma, 2007).

Research communities with a practice of sharing data are likely to have a subject specific data repository. For example, in the social sciences the Inter-University Consortium for Political and Social Research [ICPSR] (http://www.icpsr.umich.edu/icpsrweb/ICPSR/), and for Genomics the Gene Expression Omnibus [GEO] (http://www.ncbi.nlm.nih.gov/geo/). 

Lists of disciplinary data repositories can be found. A couple of good ones include re3data a directory of research data repositories which includes many different disciplines.

Have a plan!
 Think about what you may want to share BEFORE you begin data collection. Even if you are not required to generate a data management plan by your funding agency, developing such a plan and accounting for the activities needed to share sensitive data as a part of your research workflow will help reduce the time and effort to prepare data for sharing at the end of the project.  If you need assistance in developing a data management plan, please visit the PURR Data Management Planning Guide. Purdue students and faculty can contact a Research Data Specialist researchdata@purdue.edu for assistance if further assistance is needed.

“Research data - even sensitive and confidential data - can be shared ethically and legally if researchers pay attention, from the beginning of research, to three important aspects:

• when gaining informed consent, include provision for data sharing
• where needed, protect people’s identities by anonymizing data
• consider controlling access to data” (UK Data Archive, pg. 23)

Consent forms

What to include to ensure the possibility of future data sharing

• minimally, consent forms should not preclude the future sharing of data in language that can be understood by the research participant.
• Sample Statement (modified from UK Data Archive, p. 23)
  
  Thank you very much for agreeing to participate in this interview.
  The information provided by you in this interview will be used for research purposes.
  It will not be used in any manner which would allow identification of your individual responses.
  Anonymized research data will be archived at [name of data repository] in order to make them available to other researchers in line with current data sharing practices.

All consent forms need to be approved by local Institutional Review Boards before they can be used. The sample statement above may not work as presented for your particular research project or location.

Purdue offers guidance for what should be included in a consent form and special considerations for working with sensitive data and special populations.

Use and dissemination of previously collected data
Unless explicitly requested in a consent form, data from individuals collected for a particular research project cannot be shared without receiving additional consent from the subject.

Purdue offers a guide for Research with Existing Public Datasets.

During data gathering
Working with sensitive data requires training and certification for proper data handling. Sensitive data typically is not shared beyond the research group during the data gathering stage, due to the possibility of identifying individuals. 

After analysis
Post analysis data, once anonymized or de-identified, could be shared when available, or may wait until a related article(s) are published. 

At time of publication
Some journals require the data that supports a research article be published in a recognized and accessible repository at the time of manuscript submission, or as a condition of publication.