When the researchers followed up with families enrolled in a genetic biobank — a storage facility for DNA, genetic data, and tissue samples — after their initial consent, to find out whether they were fully aware of the nature of their agreement, they found something alarming: more than half of all parents misunderstood key concepts of the study.
The researchers found that, while parents had a good grasp of some consent concepts, other important information was poorly understood. For example, parents understood that their consent was voluntary and the samples would be used for research on the causes of heart defects. However, they overestimated how the research might benefit their child and undervalued the risks of enrolling in the study.
Read the full, original story here: Parents Don’t Fully Understand Biobank Research, Study Finds
