Programs to screen the genomes of healthy adults to identify genes that may put them at risk for disease later in life need to be implemented with care so that they do not do more harm than good, says an expert panel in a report published Dec. 3.
“We need to be cautious and start small and go slow,” said Malia Fullerton, associate professor of bioethics and humanities at the University of Washington School of Medicine. She is one of the paper’s co-authors.
The paper was produced under the auspices of the National Academies of Sciences, Engineering and Medicine.
Over the past two decades, researchers have identified thousands of variations in genes that appear to increase a person’s risk of developing a disease. In some cases, these links appear strong, but in others the association is weak or not fully understood.
Doctors usually test for these changes only when a person is thought to be at high risk for the disease because they have a family history of the disease or already have the disease, in which case knowing the patient’s genetic variant might help guide treatment.
Some medical centers, however, are now proposing to screen the genomes of healthy adults who neither have nor are known to be at high risk for a gene-linked disease. The hope is that identifying patients with these variants might inform the development of medications or identify preventative measures such as lifestyle changes.
The problem, the panel warns, is that many such screenings will identify gene changes that would never cause problems but their discovery alone may cause the patient worry and lead to more tests and unnecessary treatment.
