Access to genetic testing has not been equal across racial groups

‘I felt a little bit ahead of the game’

Frazier initially met with Clark in August over Zoom to discuss her potential genetic risk for breast cancer, and she recently recalled being flooded with feelings of anxiety. She didn’t know what to expect. During that first consultation, Clark explained how the test would work, if there were any out-of-pocket costs, where Frazier could get the test, and what the next steps would look like if the test came back positive. They scheduled an appointment together, and a week later Frazier had her blood drawn at Penn Cherry Hill Laboratories. The blood sample was then sent to a third-party lab to be reviewed.

“The time came, and I figured no news means good news,” Frazier said, “But then [Clark] left a message, `I would like to discuss your results.’ I was a little nervous because I thought if everything was OK, she would say everything was OK.”

During Frazier’s follow-up appointment, Clark explained that the test had come back negative but that she preferred to discuss results in person, regardless of the outcome. Because Frazier has such a significant family history of breast cancer, Clark suggested that Frazier continue with her routine annual mammograms, in addition to MRI screenings and routine checkups with a doctor at Penn Medicine’s Basser Center for BRCA.

As she reflects back on the whole experience, Frazier said, she feels lucky that she can take this preventative step to get genetic testing before any kind of cancer has the chance to strike.

“My mother [and my] family members … didn’t get the genetic tests until after their diagnosis,” said Frazier. “So I felt like I’m a little bit ahead of the game. But still, I’m still very cautious because as far as mammograms go, the area where [my mother’s] tumor was found couldn’t have been seen on a mammogram at that time.”

Efforts to make genetic testing more accessible

Frazier, who is a registered nurse, has also been encouraging other family members to get genetic testing. Those conversations have been important in making other Black family members aware of the testing as an option, she said, but she wonders why it’s not just part and parcel of routine primary care visits.

Clark said that’s something health systems are trying to do.

“I think the problem traditionally has been that [primary care doctors] don’t know which tests to order,” said Clark. “They have like 15 minutes with patients through no fault of their own, they don’t know what lab to send [the tests] to, they don’t necessarily know how to interpret the results.”

Efforts are underway to streamline the process of ordering tests through non-genetic counseling providers. But Clark said that on the patient side, there can be stigmas within families about their histories with particular diseases that can impede access to care in the first place. Sometimes, she said, there’s a culture or attitude that encourages people not to talk about family medical problems, to the point that some family members may not even be aware of a certain genetic risk they have.

“So sometimes, I think people don’t come because they say, `Well, I don’t know anything about my family,’” said Clark. “But I really feel like it’s important for people if they feel like this is something they want to know … be proactive, ask the questions. We just want to increase referrals among all patients.”

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