Clinicians and researchers typically only give patients and research participants a portion of their DNA sequencing test results back to them, but the Wall Street Journal reports there is a push to return broader results.
Some large-scale sequencing efforts like the Million Veteran program have not returned any individual results, while others like ones run by the Mayo Clinic or Intermountain Healthcare return only medically actionable results, often basing what they will give back on the list developed by the American College of Medical Genetics and Genomics, it notes. But some other studies aim to give back additional results, the Journal says. For instance, a recently launched preventative genomics effort at Harvard Medical School by Robert Green will provide individuals with results on thousands of genes.
"If a doctor knows something about me, it's not their call to make whether I should be able to be told that or not," Khara Hanlon, who took place in a study run by Mount Sinai tells the Journal. "Even if I couldn't do anything medically, perhaps, that doesn't mean I couldn't do something emotionally or financially."
The Journal adds that some projects that had been providing no or limited results back to participants looking to expand the information they provide back, noting that the Million Veteran program is conducting pilot studies to examine that possibility.