"We were surprised that so many people felt it was important for us to ask them, even though they decided to give their consent," said lead author Evette Ludman, a senior research associate at Group Health Research Institute. "This indicates that even if most of a study’s participants would agree to data sharing, it’s still crucial to ask them."
Asking permission is a sign of respect, after all. And that’s particularly important when researchers are asking for genetic samples and related medical data. "Trust is a two-way street, and human research requires lots of trust," Ludman said. "People have an understandable feeling of ownership over their bodies and medical records, including their genetic information. Researchers show we're worthy of trust when we ask research participants for permission to use their information in a way that they haven't already agreed to."
As luck would have it, there are tools to help manage and document the informed consent process. The University of Texas Health Science Center at Houston is using one such solution, called iMedConsent, to manage its research consents. The program can be integrated with an organization’s EMR so that it can automatically populate consent forms with patient and provider information. It can capture signatures from digital pads, send images of signed documents to document management systems, and post comprehensive notes to the patient’s medical record. And automating a traditionally paper-based process saves money by eliminating scanning costs and the need to manage and archive paper documents.