Open Access and Future Use of Research Data Consent Guidance
The potential for future use of data should be clearly disclosed in the consent form. There is an increasing trend in research requiring researchers to make their data publically available at the time of publication. This trend is both from the funder, e.g. Tri-Councils, and journals, who are refusing to publish papers unless the data is publically accessible. Researchers should carefully consider whether their research data could be made available in the future and in what form (de-identified or otherwise) and disclose this information in the consent form. Further considerations around privacy, confidentiality, and data management are required when data is sensitive or when there is future potential that data may be re-linked with other data to create identifiable information. It should be noted that many journals and funders will make exceptions to open access policies when it is not possible to make the data available in a way that protects the confidentiality of the participants or when sharing would erode the participants' trust in the researcher.
Needed Consent Form Disclosures:
- A statement about the potential for future use and what that means within the context of the research.
- A statement about the nature of the data that will be publically available, e.g. de-identified. Ensure terms and definitions are defined in lay terms.
- If any, a discussion of any increased risk to participant, e.g. possibility of re-identification.
- If not already covered in the consent form, a statement that once data is made publically available, the participant will not be able to withdraw their data.
- If possible, a check box to opt out of future use.