Disparity Among Young Colorectal Cancer Patients Seeking Genetic Counseling

Colorectal cancer (CRC) is the leading gastrointestinal neoplasia, which has historically been known to primarily affect individuals over 50 years of age, and screening is currently recommended for those 50 and older. This might soon change to 45 years and older. While CRC incidence has been decreasing among individuals older than 55 years, young-onset CRC has shown an opposite trend. From 2000 to 2017, the incidence rates of young adults with CRC has increased, particularly among those aged 40-49 years. Evidence suggests a discrepancy among racial and ethnic minorities, markedly amidst those who are of non-Hispanic and African American descent. 

About 20% of hereditary colon cancer syndromes are prevalent in young adults with CRC, which makes accessibility to genetic testing of utmost importance to reduce future development of the disease. Despite the need for overall accessibility, ethnic and racial groups are disparately referred to genetic counseling services.

A study conducted at UT Southwestern Medical Center and Parkland Health and Hospital System assessed 385 young adults between the ages of 18-49 years old with colorectal adenocarcinoma. The study measured the following outcomes: 

• Are patients receiving a referral to get a genetic test?
• Did the patient attend the genetic counseling appointment?Number of patients who were able to complete a genetic test

The study determined that 50% (n=225) of patients with young-onset CRC received a referral for genetic counseling services. Nonetheless, it was reported that a smaller portion of African American (n=49) patients were referred to receive genetic counseling as opposed to Hispanic patients (n=116). A downward trend was consistently noticed in African American patients from being referred to and attending appointments. Many patients report that they did not attend an appointment because they either missed it or never scheduled it. The most common reasons for not receiving the genetic test were  the inability to afford the cost, not receiving a referral to genetic counseling services, or the patient not returning their saliva sample.

Similar trends were reported among 1,647 African American women with breast cancer <50 years old who were enrolled in the Florida State Cancer Registry a year after their diagnosis. A population-based study was conducted which suggested that roughly 50% of these women were referred to and/or had access to genetic counseling services, even though the national guidelines specify that all patients should be referred. Likewise, several studies on ovarian cancers report similar disparities which need to be addressed.

All patients diagnosed with young-onset CRC should be referred to or have access to genetic counseling, regardless of their racial or ethnic background. Genetic counseling services can be of help in guiding and managing treatments among those diagnosed with CRC.