If your doctor had a way to peek into your health future and determine that you had a higher—but not definite—risk of developing cancer, heart disease, or any number of other scary illnesses, would you want to know?
It’s a question to start considering now that a procedure called genomic sequencing is set to become a standard part of your health-care routine in the not-too-distant future. Whole genome sequencing involves analyzing all of a person’s genes, obtained via a small blood sample, to find out which, if any, carry a predisposition to serious disease. For years, doctors have offered patients tests for specific genes that may cause illness—for example, the BRCA gene variants linked to a higher incidence of breast cancer. But genome sequencing looks at a person’s entire DNA and thus can uncover markers for a huge range of conditions.
On one side are groups such as the American College of Medical Genetics and Genomics (ACMG), which in March recommended that doctors tell patients about certain disease risk findings uncovered during genome sequencing—even if they were incidental findings discovered accidentally during testing for a different illness. The ACMG came up with a list of more than 20 medical conditions clinicians should look for (including specific cancers, retinal disease leading to blindness, and a genetic condition that causes high cholesterol)—whether a patient requests testing or not. The thinking is that if a predisposition for an illness is uncovered before symptoms show, the patient can get treatment or intervention early.
But a paper published today in the journal Trends in Biotechnology argues in response that doctors do not have the right to force patients to know their genetic disease risk for conditions they didn’t ask to be tested for. “The important point that we dispute is that the ACMG recommends that the patient or the patient’s parents should not have a choice about whether these extra tests are done and they receive the results,” explains Megan Allyse, PhD, a coauthor of the paper and fellow at the Stanford Center for Biomedical Ethics at Stanford University School of Medicine.
There are other issues to consider too, says Allyse. For starters, looking for so many genetic disease risks can be very costly, and if positive results are reported to your insurance company, it may affect your premiums. Also, knowing that you have a predisposition to a genetic disease can trigger anxiety and stress—especially in light of the fact that the disease may never actually develop, even without any intervention.
TELL US: Would you want your doctor to tell you about any disease risk your genomic profile points to, even if it’s an incidental finding—or would you prefer to not know? Share your thoughts in the comments!
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