Consent for data sharing
Informed consent is an ethical requirement for most research and must be considered and implemented throughout the research lifecycle, from planning to publication to sharing.
Failure to properly address issues of consent may restrict the opportunities for initial use of data, the publishing of your results and the sharing of the data.
Typically, written consent documentation includes an information sheet and a consent form signed by the participant. This division allows the background information to be as detailed as necessary, while keeping the signature form short and concise.
Broad but vague statements should be avoided and clear and plain language used.
Information sheet
An information sheet should cover the following topics:
- Purpose of the research
- What is involved in participating
- Benefits and risks of participating
- Procedures for withdrawal
- Usage of the data during research, dissemination, storage, publishing and archiving
- Strategies for assuring ethical use of the data: procedures for safeguarding personal information, maintaining confidentiality and anonymising data, especially in relation to data archiving and reuse
- Details of the research: funding source, sponsoring institution, name of project, contact details for researchers, how to file a complaint.
Here is one example of wording (Sample 1) that does not preclude sharing from the Interuniversity Consortium for Political and Social Research (ICPSR) adapted for the UK:
Study staff will protect your personal information closely so no one will be able to connect your responses and any other information that identifies you. National laws may require us to show information to university or government officials (or sponsors), who are responsible for monitoring the safety of this study. Directly identifying information (e.g. names, addresses) will be safeguarded and maintained under controlled conditions. You will not be identified in any publication from this study.
Examples with detailed wording are available that address specific concerns, such as being clear who will have access to the data during and after the project.
Consent form
The consent form should be written in plain language, free from jargon, and should allow the participant to clearly respond to points such as:
- The participant has read and understood information about the project
- The participant has been given the opportunity to ask questions
- The participant voluntarily agrees to participate in the project
- The participant understands that he or she can withdraw at any time without giving reasons and without penalty
- How confidentiality will be protected, e.g. whether real names will be used or pseudonyms, how data will be anonymised, etc.
- Separate terms of consent for data that might have different disclosure risks, e.g. anonymised interview transcripts, audio recordings. videos, pictures
- How data will be used in publications, e.g. quotes
- Whether the participants agrees with archiving and reuse of data
- Signatures and dates of signing for the participant and the researcher
The participant should be given a copy of the form and the researcher should retain the signed original.
Example consent forms
These consent forms have been used in real research projects where research data have been deposited with the UK Data service. We are grateful to the contributors for allowing us to use their forms in this way.
UK Data Archive model consent form
This form meets all requirements for depositing data and other materials at the Archive. We recommend using it, or at least the questions relevant to data sharing, for any research project where data will be archived.
This documentation bundle contains information sheets and consent forms for interviews and focus group discussions on Harm reduction and smoking.
This form was developed for the ESRC funded project Relocalisation and Alternative Food Networks: A Comparison of Two Regions.
This form was developed for the Department of Health funded project Health and Social Consequences of the 2001 FMD Epidemic in North Cumbria.
These consent forms were created for the 10/66 INDEP mixed methods study of the economic and social impact of residing with a care dependent older person in China, Mexico, Peru and Nigeria.
Consent form and film release form for video diaries and film recordings captured for the Creating Hackney as Home project.
Consent forms for capturing visual and audio recordings during arts workshops on Communicating chronic pain.
This consent form and information sheet are templates for use in medical research. Our thanks to the MRC Cognition & Brain Sciences Unit for making it available.
Consent forms and information sheets are available from interviews with people with diabetes about their use of Facebook from the 'Chronic Illness and Online Networking' dataset.
An example consent form from collecting data on online forums can be found in the 'Doing TB Differently' dataset.
Destruction of consent forms
Consent forms should be kept for as long as the research data are retained (by the researcher or an archive). The original consent forms can be digitised and stored securely (encrypted), permitting the originals to then be destroyed securely by means of shredding.
further resources
Global Kids Online Research Toolkit (PDF) provides tools and example consent forms for working with children and schools.
