Their DNA Hides a Warning, But They Don’t Want to Know What It Says

January 24, 2022

(New York Times) – What should happen when researchers, while sequencing a participant’s DNA as part of a large study, discover gene variants that increase the risk for conditions that might be prevented with medical treatment or surveillance? Some researchers believe they have an obligation to find the participants — often years after they provided a DNA sample — contact them, and tell them what they have found. But, some research subjects, like Ms. Konstadt, feel they have a right not to know. Is it ethical for doctors to let them insist they can opt out of learning more without first knowing the particular risk they are facing? (Read More)