Should We Say Anything?

What should a researcher do if he or she finds something unexpected in the DNA of a human research participang during an experiment? That was one topic of the recent Personal Genomes meeting at Cold Spring Harbor Laboratory, says Nature News' Erika Check Hayden. What are the ethics of revealing "nasty surprises" to people, Hayden asks. As sequencing an increasing number of genomes becomes more common, this question will come up more and more, Hayden says. However, US federal law prohibits researchers from telling patients about mutations that might affect them until a CLIA-certified lab has double-checked the results, which most researchers don't do. "This means that patients often do not learn about their mutations until the studies are finally published, a restriction that is meant to ensure they are not misinformed by incomplete research," she adds. Some scientists are now arguing that research should always be done in a certified lab, so they can get information back to participants as quickly as possible. "But ethicists point out that although researchers and physicians may feel obliged to disclose genetic information, they must also consider other factors," Hayden says, including the cost to society should people be made aware of their mutations.