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One-third of women with breast cancer desire genetic testing
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Many women with nonmetastatic breast cancer expressed a strong desire for genetic testing, especially if they were younger or an ethnic minority, according to study results.
“With recent judicial opinions, direct-to-consumer marketing and celebrity reports, the public has become much more aware that genetic testing is available,” Reshma Jagsi, MD, DPhil, of the Center for Bioethics and Social Science in Medicine at the University of Michigan, said in a press release. “But genetic risk is complex. Even patients unlikely to have elevated genetic risk may still benefit from a discussion.”
Reshma Jagsi
Jagsi and colleagues evaluated data from 1,536 women (mean age, 57.5 years) who were treated for breast cancer in Detroit and Los Angeles. The cohort was composed of white women (n = 728), black women (n = 380), Spanish-speaking Latinas (n = 203) and English-speaking Latinas (n = 191).
Researchers used a baseline survey to establish level of patient worry about their family members’ risk for breast cancer. In a follow-up survey, patients indicated whether a health care professional discussed genetic testing with them. Patients were then asked whether they underwent genetic testing and to indicate why they made their decision.
Thirty-five percent of patients (n = 493) indicated a strong desire for genetic testing. The desire to undergo genetic testing was significantly associated with younger age (each year older at diagnosis, OR = 0.95; 95% CI, 0.93-0.96), Latina race (English speaking, OR = 1.32; 94% CI, 0.86-2.03; Spanish speaking, OR = 3.64; 95% CI, 2.34-5.66) and having a family history of breast cancer (OR = 1.73; 95% CI, 1.26-2.39).
A significantly greater proportion of Spanish-speaking Latinas (83.1%) and English-speaking Latinas (56.7%) indicated fear that family members might develop breast cancer than black women (31.1%) or white women (38.4%; P < .001).
Nineteen percent of patients underwent genetic testing, and 28% indicated that they discussed genetic testing with a health care provider. However, 43.3% (n = 196) of patients who expressed a desire for genetic testing did not have a relevant discussion with their doctor or a health care professional. Minorities were more likely to have an unmet need for discussion with a health care provider, and Spanish-speaking Latinas were five times more likely to not discuss genetic testing with a physician than non-Latina white women.
A greater proportion of women with an unmet need for genetic testing discussion expressed worry about breast cancer than women without an unmet need for discussion (48.7% vs. 24.9%; P < .001).
“Our findings suggest a marked unmet need for discussion about genetic risk,” Jagsi said. “By addressing genetic risk with patients, we can better inform them of their true risk of cancer returning or of developing a new cancer. This could potentially alleviate worry and reduce confusion about cancer risk.”
Genetic testing occurred most frequently in younger patients, white women and patients with a family history of cancer. The most frequent reasons for the receipt of genetic testing were clinician recommendation (65.2%) and desire for information for a family member (53.6%), whereas the most common reasons for forgoing genetic testing included physician recommendation (64.9%), personal choice (8.9%) and financial expense (7%). Of the 269 who underwent genetic testing, 20.5% did not indicate a strong desire for testing.
The researchers acknowledged limitations of their study. Available data were limited to two urban areas and did not include data from rural women. Also, because the study relied on self-reporting, there was a potential for inaccuracy or misreporting.
“Testing itself should not take the place of considered discussions of risk between physician and patient,” Jagsi and colleagues concluded. “This study suggests that discussions regarding the actual risk of a hereditary syndrome are critical, particularly in vulnerable populations. Physicians must take care to explain the difference between risk of new primary cancer and recurrence of the incident cancer. Such discussions are essential to help patients at higher risk to access testing while also helping patients at lower risk to appropriately avoid testing without leaving lingering worry.” – by Cameron Kelsall
Disclosures: Jagsi reports honoraria and research funding from and consultant roles with AbbVie, Eviti and the International Journal of Radiation Oncology, Biology, Physics. One other research reports research funding from Invitae and Myriad Genetics.
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