Table 2.
Understanding of Informed Consent
| Survey Item (Correct Answer) | % Correct |
|---|---|
| Study Purpose (What are the main reasons this project is being done?) | |
| To study how genomic information is used in healthcare decisions (True) | 99% |
| To test a new gene-targeting drug (False) | 91% |
| To create a map of the human genome (False) | 67% |
| Study Procedures (This study involves…) | |
| An experimental drug (False) | 100% |
| A blood draw (True) | 100% |
| At least 4 study visits (True) | 97% |
| Completing surveys (True) | 97% |
| Genetic testing of my family members (False) | 95% |
| Randomization (What information will you receive as part of this study?) | |
| I have a 50% chance of receiving info from my whole genome sequence (True) | 98% |
| I will definitely receive information from my whole genome sequence (False) | 94% |
| I have a 50% chance of receiving info about my family history (False) | 70% |
| I will definitely receive information about my family history (True) | 60% |
| Results Returned (As part of this study, I may receive results that include…) | |
| My risk of developing certain diseases for which there are no known preventions, cures, or treatments available (True) | 98% |
| Personal genetic traits, such as eye and hair color (False) | 90% |
| New information that doctors or researchers do not understand (True) | 81% |
| Study Procedures and Related Risks | |
| My results will be placed in my medical record (True) | 100% |
| My results will be discarded when I complete this study (False) | 98% |
| Partners HealthCare System will pay for additional medical tests to follow up on my results (False) | 93% |
| I’m protected by federal law from genetic discrimination by health insurers & employers (True) | 92% |
| My results will not be accessible to anyone outside of Partners HealthCare System (False) | 87% |
| My de-identified WGS results will be shared with other researchers in a national database over the Internet (True) | 86% |