Health researchers ask for consent because of the fundamental ethical principle that people’s participation in research should be informed and voluntary.
But informed consent takes a lot of forms, and isn’t always required. In some cases, it’s not possible or practical to get written consent from participants. For example, Michigan’s Biobank includes 4 million bloodspots that were initially collected for a different purpose (newborn screening). What’s more, they are stored for health research use indefinitely. How does informed consent work for “future research uses” that are not yet known?
We conducted a pilot test to see what it would be like to collect informed consent online. The idea is that online portals could allow research participants to be specific about if and how they want to participate in research, and participants could use the portal on an ongoing basis to remain active partners in research. In an age of increased data sharing, portals like the one we tested could be important to the future of health research.