Legal and Ethical Issues

What are the legal and ethical considerations when depositing data about participants for secondary use?

Canadian and Albertan legislation prescribe how personal information can be used.

  • The Freedom of Information and Protection of Privacy Act (FOIP) requires a public body to obtain consent “in the prescribed manner” for the use or disclosure of personal information.
  • The Health Information Act (HIA) states that “as a general rule, an individual’s consent is required before individually identifying health information is disclosed.”
  • The Personal Information Protection Act (PIPA): “An organization shall not, with respect to personal information about an individual, use that information unless the individual consents to the use of that information.”

Consent from participants/clients (or re-consent in the case of studies/programs which have finished) is the key component to being about to use or disclose personal information for secondary use. Consent needs to be clear, free (voluntary) and informed, and participants should be given the possibility to withdraw their consent in the future. For more information, see Consent.

The Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans implies that consent for secondary use is required unless very specific conditions have been satisfied.

How does SAGE help with potential legal and ethical issues to do with data sharing?

  • From a data production perspective, we help data producers to ensure that data sharing is possible – this includes helping data producers with sharing-permissive language in consent forms (or re-consent forms if that is financially and logistically feasible) and ethics applications when pertinent.
  • From an access standpoint, secondary data use research projects require ethical approval from a recognized ethics board before data access.
  • Both data depositors and accessors sign agreements that protect their rights, as well as safeguard the privacy and confidentially of the individuals about whom the data is about.
  • SAGE vets analytic outputs to minimize the risk of re-identification of clients or participants in the data we hold (see our Vetting Checklist).
  • SAGE commissioned a study on the Law and Governance of Secondary Data Use and the Obligations of Not-For-Profit Organizations in Alberta to inform not organizations willing to share data (for a summary of study, see SAGE leaflet on How Community Organisation Data Can Add Value).

 

To find out more, please contact us at data@policywise.com.