Aligned Blog: Knowledge is Power: The Value and Importance of Genetic Counseling

Headshot of Michaela Taylor, CGC, M.S.

Michaela Taylor, M.S., CGC, Cancer Genetic Counselor in the Genetics Branch.

By Michaela Taylor, M.S., CGC, Cancer Genetic Counselor in CCR's Genetics Branch.

As we celebrate the 4th annual National Black Family Cancer Awareness Week, themed “Engaging Generations”, there are many conversations that are of importance relating to Black family cancer awareness including the importance of cancer screenings such as mammograms and PSA testing, acknowledgment of higher rates of cancer among Black and African American individuals, and the likelihood of poorer outcomes for these individuals once they are diagnosed. However, I’d like to focus on often overlooked topics such as the value of discussing family health history, genetic counseling, and the paramount importance of genetic testing in cancer awareness and prevention.

Given the significant role family engagement plays in genetics, this seems like an excellent time to discuss the role that genetic counselors and genetic testing play in the healthcare system. Genetic counselors have specialized training relating to genetics and counseling. Generally, they help patients make informed decisions about genetic testing and though they can have a variety of specialties, this blog focuses on the role of cancer genetic counselors.

An issue that arises when considering the discussion of family history, genetic testing, and genetic counseling is that in many families health concerns are considered secret. Furthermore, many Black and African American individuals are not aware of the option for genetic testing or may have misconceptions about how testing will be used. Additionally, in some cases, their medical provider may also be unaware of the option for genetic testing or have misconceptions about who can benefit from it based on their ethnicity.

Cancer genetic counselors perform risk assessments, based on personal and family cancer history, to determine how likely it is that an individual has a genetic predisposition to cancer. They also engage in shared decision-making to help patients make informed decisions about whether genetic testing is appropriate for them. Prior to testing, this includes a discussion about the optimal test, the risks, benefits, and limitations of testing, the possible test outcomes, and the implications based on different genetic testing results. When results are returned the conversation entails reviewing if an individual has been identified to be at increased risk of developing any cancers, recommended screening based on those risks, and other family members who should get screening and testing based on either an identified genetic variant or family history. In some cases, genetic test results can also influence treatment options for individuals who have already developed cancer. Genetic counselors are also trained in counseling techniques to help patients cope with the psychological implications of genetic testing.

In the landscape of genetic counseling, there are disparities for both providers and patients. Several studies have documented the inequities surrounding access to genetic counseling and testing for racial and ethnic minorities. Furthermore, about 90% of individuals who call themselves genetic counselors in the United States identify as white women. This number is slowly changing through efforts such as the Genetics Opportunities, Learning, Development, and Empowerment Network (GOLDEN) which is dedicated to increasing the awareness of genetic counseling among Black students and providing mentorship throughout the graduate school application process. However, there is still a long way to go before there is equitable access to genetic services for aspiring providers and patients alike.

One way to combat these disparities is through raising awareness about genetic counseling. Efforts such as GOLDEN are important in closing this knowledge gap. Mistrust in the medical system amongst marginalized communities is often cited as contributing to low uptake of genetic testing. However, research has shown that many aspects of patient experience improve in settings where they share the same race/ethnicity as their healthcare provider. Therefore, if the goal is patient-centered care, working towards these efforts is imperative.

While there is still a long way to go in terms of combating the disparities associated with genetic counseling and testing, this is not an issue to which we should be resigned. So, as we reflect during this year’s Annual National Black Family Cancer Awareness Week, I encourage you to make genetic counseling part of the discussion with both your family and your patients. While there are many factors that contribute to the disparities we see today, lack of knowledge is one that everyone can combat through having a simple conversation. 

Aligned is a blog written by the Center for Cancer Research's (CCR) Office of Equity and Inclusion discussing diversity, equity, inclusion and accessibility (DEIA) and highlighting various ways we can all be more involved in creating a more diverse scientific workforce. Learn more about CCR's commitment to inclusion.

Posted on Mon, 06/17/2024