If you have gene variants such as BRCA or Lynch Syndrome, both of which may lead to difficult-to-treat cancers, “you’ve noticed it,” says Thomas May, an endowed professor of bioethics in Washington State University’s College of Medicine. “Noticed” is May’s measured way of saying that “multiple people in your family have died” of breast or colon cancer.
“Unless you don’t have access to family health history,” May adds.
One of the primary diagnostic tools available to doctors is family medical history. Breast cancer, cardiovascular disease, and other conditions are often genetic. Knowing that a parent had a disease is important information in preventing it in the child.
But adoptees often lack access to that history. That, says May, puts them at a disadvantage that is both systemic and unjust.
Together with an interdisciplinary team of experts, May argues that genetic testing is a way to bridge health history gap.
The adoptee community is keenly interested in filling that gap, May says, as demonstrated through surveys, focus groups, published narratives, and utilization of direct-to-consumer genetic testing services.
But there are concerns. Consider Angelina Jolie, May says. After a screening test indicated the actress had the BRCA variant that carries a very high risk of breast cancer, she had a double mastectomy. But what if someone acted on a test for a disease that had a less than one percent chance of actually manifesting?
“The prophylactic intervention may actually be more dangerous than the risk of actually manifesting the disease,” he cautions. That’s one reason why he and the genomic family history project team, which includes members of the adoptee community, argue that filling the informational gap should be limited to genetic testing of only very high-risk, highly pathological diseases.