Glossary

A personally valuable result is information that might be of value to the participant or their healthcare provider regardless of whether the result is actionable. These results do not require immediate action. 

Examples of personally valuable result are:

• genetic screening of a normal individual return’s cystic fibrosis carrier status
• participant is found to have Gilbert’s syndrome with an abnormal bilirubin secondary to a variant of a gene but one that does not cause liver disease. It is important to know, however, so that unnecessary tests are not performed
• the participant is found to have a rare blood type.

Multi-Regional Clinical Trials-MRCT Center of Brigham and Women’s Hospital and Harvard. Return of Individual Research Results