Geoff Lomax, CIRM's Senior Officer for Medical & Ethical Standards, is blogging from this week's 2013 Till & McCulloch Meeting in Alberta. The meetings are Canada’s premier stem cell research event and provide networking with leading stem cell scientists, clinicians, bioengineers and ethicists from Canada and around the world.
Ubaka Ogboug is a policy researcher at the University of Alberta. He is very interested in how people's privacy can be protected when their cells and health information are used in stem cell research. In March of this year, his research team convened a workshop for the national government of Canada. The workshop was designed to develop policies to ensure privacy protection when conducing stem cell research.
The research group is in the process of developing recommendations for how people's information is collected, used and shared with other researchers. We are tracking this work because CIRM is working with its grantees to consider the same issues in regard to the iPSC Bank. The iPSC bank will collect cells and health information from donors to create cells that can be used to study disease and develop new therapies. Read this press release to learn more about our iPSC banking initiative.
However, what was really cool is Ubaka’s poster describing his project. When I first saw it I thought it was a board game. However, it is a very creative way of engaging people and describing the important questions one needs to consider when using peoples cells and health information. Some of his questions include:
- What are effective ways of getting permission from people to use their cells and health information
- How can information be securely shared by researchers
- How can information flow back to people who are interested in leaning about research progress