, The New York Times ; Their DNA Hides a Warning, but They Don’t Want to Know What It Says
"Benjamin Berkman, a bioethicist at the National Institutes of Health, said that, in his view, the benefits of telling participants about genetic findings that can be treated or prevented greatly outweighed the risk that the participants might be frightened or fail to follow up.
“These are important pieces of information that can be lifesaving,” he said.
But not all biobanks give subjects the chance to receive health warnings.
At Vanderbilt, Dr. Clayton said, she volunteered genetic information to a biobank whose participants have been de-identified — all names and other personal information are stripped from the data. It also has other protections to prevent individuals in the bank from being found. While she happily contributed to the research, Dr. Clayton said, she is glad her data can’t be traced and that no one will call her if they find something that may be worrying.
“I don’t want to know,” she said."
