“I was like, wait a minute. Where will this information go? How will it be used? ‘ she then asked. “I don’t know if life and health insurance will have any effect on me and my family, but why take such a risk?”
What happens when researchers, while sequencing participants’ DNA as part of a large study, discover gene variants that increase the risk of preventable conditions by treatment or medical supervision? Some researchers believe they have an obligation to find participants – often years after they provide a DNA sample – to contact them and let them know what they have found. However, some research subjects, like Ms. Konstadt, feel they have a right not to know. Is it ethical for doctors to let them stress that they can opt out of further education without prior knowledge of the particular risk they are facing?
For Dr. Robert Green, a biobank investigator with Mrs. Konstadt’s DNA, Mass General Brigham Biobank, and author of a recent newspaper In terms of its policies, the answer is obvious. The consent form for the biobank tells the participants that if the researchers find a worrisome variant and if there is an intervention that can reduce the risk, the participants will be contact. There will be seven attempts to reach participants – calls and letters – before the group gives up.
“We are providing the information, not forcing the participants to accept it,” said Dr. Green, a geneticist and professor of medicine at Harvard. “If you don’t answer the phone or decide when asked that you don’t want to hear any more or even hang up when we call, that’s your choice.”
Dr. Green and his colleagues point out that the possibility of being contacted is in the form of consent:
Although you should not expect to receive any results from participating in this study, if experts from the Biobank decide that the study results from your sample are of high medical importance, We will try to contact you. In some situations, a follow-up test in a certified clinical laboratory may be needed. You and your health insurance company may be responsible for the costs of these tests and any follow-up care, including deductibles and copayments.
But some people, like Ms. Konstadt, didn’t notice it when they signed the application.
Of the more than 36,000 participants, whose DNA researchers analyzed, the Mass General Brigham Biobank found 425 worrisome gene variants whose impact could be improved – depending on genes – enhanced cancer surveillance or aggressive medical treatment to lower cholesterol levels, for example. .
https://www.nytimes.com/2022/01/21/health/dna-biobanks-mutations.html Their DNA hides a warning, but they don’t want to know what it says