NEW YORK – A survey of nearly 1,000 individuals identified gaps in cancer genetic awareness among groups like African Americans and men and found associations between certain beliefs about cancer and genetic awareness.
The survey, conducted by researchers from Thomas Jefferson University's Sidney Kimmel Medical College, was sent to individuals within Sidney Kimmel's catchment area, including several counties in Pennsylvania and New Jersey. The researchers hoped to identify areas to focus their education efforts to help patients from all backgrounds make informed decisions about genetic testing.
The survey focused on awareness of germline testing, like screening for mutations in BRCA1/2 to assess the risk of breast cancer and screening patients for Lynch syndrome to determine risk for colorectal cancer.
Germline testing is currently recommended for patients with a family history of any of several cancer types, including breast, prostate, ovarian, pancreas, and colon cancers. Patients with certain mutations in BRCA1/2 may be recommended for more frequent screening. Germline testing also helps guide treatment for patients who are diagnosed with certain cancers. In the US, AstraZeneca's PARP inhibitor olaparib (Lynparza) is approved to treat ovarian, breast, and prostate cancer patients with a germline BRCA mutation.
To determine awareness of the genetic risk of cancer, the survey asked respondents, "How much do you think genetics, that is, changes in DNA that are associated with diseases, passed from one generation to the next, determine whether or not a person will develop cancer?" The survey also asked if patients had heard of genetic testing for cancer risk, discussed getting testing done with their doctor, or previously had a genetic test to assess their inherited cancer risk.
While genetic testing to determine cancer risk has been around for many years, said Veda Giri, an author of the study and a professor in medical oncology and cancer biology at Sidney Kimmel, the researchers wanted to know how much their patient population knew about this option.
"[Germline testing] is impacting care across the spectrum; for people that don't have cancer but are interested in knowing their risk of cancer, for people with earlier stage cancer thinking about hereditary cancer risk, and for patients with metastatic cancer to guide their treatment," Giri said. "As these advances are happening in genetics and genomics, we need to keep an eye on disparities that occur in awareness of genetic testing, engagement in the genetic evaluation process, and in the uptake of genetic testing."
Of the 940 respondents, 35 percent were males and 23 percent of the overall cohort were non-Hispanic Black. Overall, the Black respondents had lower awareness of the germline genetic tests for inherited cancer risk than white respondents. In the results, 34 percent of Black males and 46 percent of Black females said they were aware of these types of tests compared to 47 percent of white males and 58 percent of white females.
However, a slightly higher proportion of Black respondents said they had previously received genetic testing. Black men reported the highest rate of previous testing with 10 percent saying they had genetic testing, compared to 5.8 percent for white men, 7 percent for white women, and 6.2 percent for Black women.
The survey also found that women of all races had more awareness of cancer genetic testing than men, as did people who had higher education and those with high-middle to high incomes.
Race or ethnicity and sex were not independently predictive of knowledge of genetic tests. However, the results also found certain beliefs and behaviors related to cancer, like cancer fatalism and motivation for cancer information, were predictive of genetic awareness.
Lower medical literacy, including needing help with medical materials, lower confidence with completing medical forms, and difficulty with written medical information were all associated with lower awareness of genetic tests. Giri and her co-authors hope to use these results to guide education efforts in the community.
"These are modifiable factors; they are factors that we can address with tailored educational programs in the community," Giri said. "We want to incorporate information about genetic testing and what it means that is at an understandable reading level and that's understandable from a numeracy standpoint."
The survey also helped identify communities that may need more tailored strategies to raise awareness about genetic testing. One effort from Sidney Kimmel focused on prostate cancer has used peer-to-peer education strategies in Black communities.
That effort brings in Black men who have had prostate cancer or had a family member with prostate cancer to lead community education sessions about their experience. The cancer center trains the educators about ways to discuss genetic testing and treatment, while allowing them to share their experience and connect with the community.
"Having these speakers with a primarily African American audience really helps that relatability. The peer educators can also touch on those cultural beliefs like having a fatalistic view of cancer," Giri said. "It's so nice to see how the lights go on in people's eyes when these things are brought up because it's just been this thought in the back of individual's minds, but when that's brought up from a peer, it's much more relatable."
The peer-based education strategies could also be applied across other demographics, like gender- or race-based groups, she added.
Sidney Kimmel has also begun engaging with local health clinics to raise awareness about germline testing. They provide information about genetic testing to the clinics at an easily understandable reading and numeracy level so patients who may not even visit the cancer center can learn more about testing for cancer risk.
Giri and her team are also exploring using technology to raise awareness. The researchers are producing a podcast for both patients and healthcare providers in the community to get the word out. However, barriers to technology, like access to smartphones and at-home Wi-Fi, can still make reaching individuals difficult.
"We have to think about this like a Swiss cheese model, bringing together technology, in-person [education], telehealth, and phone calls so we don't miss any segment of the population," she said.
The goal is to make sure people know germline testing is an option for them, whether they receive testing or not. She hopes the education efforts will empower patients to make decisions about germline testing for themselves.
"We want it to be an understandable and a comfortable process to think about for all diverse populations," Giri said. "This survey supported the need for more education because the germline testing is so central now and so many people are eligible that we want to make sure that we are providing equitable strategies to engage diverse populations."