Research using linked data is increasingly conducted by both public and private organizations and, while using linked data for research has the potential for discoveries that positively impact society, it also raises concerns relating to illegitimate use, privacy, and security issues. Balancing the potential benefits of research with the associated risks requires making trade-offs that can, and should, be informed by the public’s perspectives and interests.
A public deliberation event, Using Data About You for Research: Who, How, and Why, was organized by Population Data BC (PopData) and research colleagues and held in Vancouver, British Columbia, in the spring of 2018. The purpose of the event was to receive informed and civic-minded advice from people living in the province regarding the acceptable use of linked data for research. It involved British Columbians with a range of age, gender, area of residence, income, ethnicity and life experience.
During the deliberation, participants were encouraged to start from a blank slate and make the recommendations they thought represent good practice without respect to what is or is not in place currently. The event took place at the height of Canadian media coverage of the activities of Cambridge Analytica and Facebook.
“Participants were supportive of research using linked data where that research has the potential to provide value to society,” said Kim McGrail, Scientific Director at PopData and Principal Investigator on the project. “They expressed a desire for efficiency in data requests as long as there are protections in place to ensure the security and privacy of the data.”
A recently published paper in the International Journal of Population Data Science summarizes the participant’s recommendations which are grouped into four themes: governance of linked data; the review process and security; researcher and Data Steward responsibilities; and public involvement.
Governance of linked data
- There should be an investment in the creation of linked data sets
- Efficiency and fast tracking in the approval process is valued
- There is a desire for limited involvement of commercial entities
- Some kind of oversight is needed for all aspects of data sharing
The review process and security of linked data
- There should be a review of the results and publication of research using linked data
- Best practices and guidelines should govern storage of and access to linked data
- There is a need for scientific review, ethics review, and ongoing monitoring of the use of data by researchers
The responsibilities of researchers and Data Stewards
- Data Stewards should have standardized training and perhaps certification, and should follow standard policies and procedures for managing data access requests. They have limited need to monitor research results.
- Researchers should sign contracts that outline confidentiality requirements, have a training or certification program on their responsibilities when using linked data, including responsibility to vulnerable populations.
Public involvement
- There should be public disclosure of the requests for access to linked data
- Transparency is key
PopData has been providing linked data to BC’s researchers for over 20 years. “Data and new capabilities to use those data are developing rapidly. It is important that the public has a voice in how this new world of research unfolds,” says Professor McGrail.
This conversation will continue with a second deliberation in the fall of 2019. Both deliberations are part of a project funded by the Canadian Institutes of Health Research.
