Table 5.

Example of consent form ‘executive summary’

We would like to store some of your blood and health information in the Duke Biobank for use in research on health and disease. You can take part in this storage project or not. This consent form gives information to help you decide. Please read it carefully and take all the time you need to make your choice. Some of the most important things for you to know are: The purpose of this project is to collect and store samples and health information for use in future research. We will draw blood from you. We will ask you some basic information and will contact you to update this information. We will also collect information from your medical records. Your sample and information will be stored forever unless you decide to stop taking part. Researchers may study your samples and information. We will not give them information that directly identifies you. Someone from the Biobank may contact you about participating in additional research. Some of your information might be put into a database. There is a small chance that someone could trace your information back to you. We will take many steps to protect your privacy, but there is a risk that someone could get access to information about you. There is a law against discrimination based on your information. You should not expect to benefit from this research. You will not get money from anything that is done using your sample. You should not expect to get individual results back from this research. You have the right to leave the project. However, we cannot withdraw or get back samples and information from studies that have already begun. There is someone you can contact if you have questions or want more information.

Readability characteristics: Flesch-Kincaid grade level 7.3; Flesch-Kincaid reading ease 65.2 (test rates text on 100-point scale; the higher the score, the easier it is to understand); passive sentences 9%