The Tigerlily Foundation and Guiding Researchers and Advocates for Scientific Partnerships (GRASP) February conversation was co-hosted by Dr. Altovise Ewing, Genetic Counselor and Health Equity Scientist and our patient experts, Ashley Dedmon, Josan Sutherland, Tiffani Smithson, Lyndsay Levingston and Deltra Kroemer. The panelist focused on “why black genes matter” a conversation on the importance of genetic counseling.
Dr. Ewing created a presentation on “Disparities in genetic counseling and genetic testing” to provide a high–level overview of some of the disparities that are observed within genetic counseling and with the utilization of genetic testing. Dr. Ewing emphasized that her presentation objectives were to examine genetic counseling and testing disparities experienced by underserved and underrepresented populations.
“Black women at the time were less likely to be diagnosed, but more likely to die from the condition and also more likely to be diagnosed with more at the end stages, as well as the most aggressive form of cancer.” Dr Ewing stated during her presentation. She discussed the importance of knowing your genetic status could help guide personalized medical management and help prevent the onset of diseases.
Dr. Ewing brought to light about the different experiences of people who go for genetic testing, people from underrepresented populations are more likely to receive variance of unknown significance, which is really an ambiguous result, compared to other populations who are more likely to receive more detailed results.
The benefits of genetic counseling for cancer include:
Better understand risk for cancer or cause cancer diagnosis
Guide medical management
Guide Risk management
Inform family members’ medical management.
“Breast cancer impacted three generations of women in my family my great grandmother my grandmother my great grandmother my grandmother, and my mother who had stage four metastatic breast cancer and passed away.” Ashley Dedmon, public health professional and author knew that she had three generations of women in her family who were impacted by breast cancer as well as her father being affected by prostate cancer. At age 32, Ashley had a bilateral prophylactic mastectomy which drastically reduced her risk from 87% down to below 2% residual risk, which shows how important knowing your family history can be, as well getting genetic testing to know whether you are at high risk or not.
“I’ve been diagnosed with cancer three times and I have survived all three boats, I am originally from Jamaica, and so my cancer journey started really early in Jamaica at the age of 12.” Josan Sutherland, a cancer thriver, has been diagnosed with cancer three times and survived all three diagnoses. At first her health team did not recommend genetic testing and Josan was not aware of the possibility of genetic testing until her second diagnosis. Josan, originally from Jamaica and currently resides in the United Kingdom, she is studying information on genetic testing to take back to Jamaica.
“It took about almost three years to get the necessary documentation required by my health insurance to even get genetic testing. It was never brought up by my medical team whatsoever.” Tiffani Smithson, a social worker, shared her story about how it took her three years to even get her medical insurance to cover genetic testing for her and her medical team did not discuss it with her either. Tiffani wanted to highlight how important it should be for families to talk about medical histories within the family as it can help other family members get early detection and how people should not be ashamed of any illness.
“I underwent 15 rounds of chemotherapy and halfway through, I would say after the fifth round, my nurse practitioner questioned my family history and, at the time I didn’t know, have any family history until a cousin on my paternal side of the family suggested that I seek genetic testing, because I am now the 13th Levingston female to have been diagnosed.” Lyndsey Levingston, a multimedia expert, amplified what Tiffani preached about genetic testing. After being diagnosed with triple negative breast cancer, her nurse practitioner asked Lyndsey about her family history, and she had no knowledge of any existing cancer in her family. After she had received genetic testing, she found out that she is the 13th female in her family to have the BRCA1 gene. Lyndsey advocates and encourages others to get genetic testing in spite of fear, as well as learning to have those uncomfortable talks about family history.
“One of the tests that my doctor included in the array of testing was actually genetic testing I hadn’t heard of it, I didn’t ask for it but I’m extremely grateful for it.” Deltra Kroemer is a supermom to five daughters, speaks about how important it is to know your body as she believes it is important to do self-examinations regularly to make sure everything feels normal. Deltra was diagnosed with triple negative metastatic breast cancer after noticing a lump in her breast during one of her self-examinations. Deltra is extremely grateful for her doctor suggesting genetic testing, even though she had no family history of cancer, she now knows more and is dedicated to teaching her daughters about their health.
Family members should initiate conversations around health.
Advocate for yourself to get genetic testing.
Always practice and do regular self-examinations.