Can we share health research data without losing our privacy?

Sharing health research data allows more scientists to study the data and creates opportunities for them to advance our understanding of health and disease and to develop better treatments. However, sharing health research data may sometimes put our privacy at risk. This could happen, for example, if people who aren’t doing research have access to personal data that could be linked back to a person.

As researchers share more data with other researchers around the world, the legal and ethical considerations of managing this data are becoming more complex.

Our research looked at ethical and legal aspects of data sharing according to Canadian ethical and regulatory policies. We discuss how a type of legal contract called a Data Access Agreement can enable a safer and more straightforward transfer of data to other researchers. Because the individuals (the data “Users”) who will have to follow the requirements set by the Data Access Agreement will usually have a limited understanding of legal terminology, it is important to write them in plain English. We describe a number of points that can be addressed by data access policies to encourage data sharing and reuse, and to help clarify data Users’ responsibilities.

For example:

• Consider a broad range of potential data Users and allow them to establish their credentials to access the data by providing a list of their publications or a description of their expertise;
• Prevent potential jurisdictional issues by reminding the data Users of applicable provincial and national privacy laws and ethical guidelines;
• Remind the data Users that they should not disclose the protected data to anyone and to contact the Data Access Office if they receive requests for data disclosure, including those stemming from Freedom of Information requests; and
• Give detailed instructions on how data Users are to acknowledge the contributions of researchers sharing their data to encourage future data sharing projects.

Read the full paper — Evolving data access policy: The Canadian context
by Stephanie O.M. Dyke, Katie M. Saulnier, Tomi Pastinen, Guillaume Bourque and Yann Joly on the FACETS website.