Prior to the test, a patient can visit with either a genetic counselor from Fred Hutch or another health care provider to better understand the test and their risk. After test results come back from the lab, typically a few weeks later, there is a second consultation to discuss the results and any changes to medical management.
“For some people, next steps might mean making a lifestyle change, like reducing their alcohol intake,” said Vida Henderson, PhD, PharmD, a public health researcher at Fred Hutch who's currently working on a project designed to reduce barriers to genetic testing for Black women. “For others, it might involve having more frequent screening tests or doing them at an earlier age, like mammograms or colonoscopies. This way, a problem can be detected at its earliest stage, when it can be managed most easily.”
Sharing difficult information
If you learn you have inherited a gene variant that puts you at higher risk for cancer, it’s important to share this information with your family since you share some of your genes with them.
To help you approach this topic, your physician or genetic counselor can give you with a letter to share with family that provides information to help them understand the genetic variant you have, explain that they may also be at risk, and encourage them to find out more, so they can decide if they also want to be tested.
“It may be an uncomfortable conversation, but if you get it out of the way, someone will benefit the next time around,” said Dubard-Gault.
In her clinical practice, Cheng has observed that sometimes people feel worried that sharing this information may burden their family.
“When discussing these topics, it can help to share what you know about your own diagnosis, and how the information may have helped your medical team know more about how to tailor your care,” said Cheng. “There are also actions that can be taken to reduce cancer risk.”
New research in 2024
In 2024, Henderson will be building on work already in progress related to a video education project aimed at increasing genetic counseling and testing among Black women. This next phase will include developing a point-of-care genetic testing program.
“We want a woman to be able to come to a community event or clinic, watch our video, then — right then and there — get tested,” she said. “As it stands now, most women who could benefit don’t understand or seek out genetic counseling or preventive screening, so hopefully this will help change that. This is highly important since Black women are more likely to die from breast cancer than any other race or ethnicity. Early detection and risk reduction strategies are critical.”
Cheng will continue to expand her work within prostate cancer in the new year, particularly with men who have advanced prostate cancer, through the Prostate Cancer Registry of Outcomes and Germline Mutations for Improved Survival and Treatment Effectiveness (PROMISE) program, where she is principal investigator. Approximately one in 10 men with advanced prostate cancer have been found to carry an inherited genetic mutation, but with germline testing, available for free through the PROMISE registry, these patients can have more focused treatment options and options to be considered for clinical trials.
Dubard-Gault is seeing artificial intelligence, or AI, beginning to be incorporated into her research, most recently on an initiative related to the accessibility of genetic testing educational materials. She also is particularly excited about AI’s data-processing potential, which will ultimately result in more patients being identified faster and treated more optimally.
Moving into the new year, she said her goal is to continue to build on the work that has been done to reduce health care disparities so all patients who need hereditary testing will have access to it.
“Just having the ability to test is not impactful,” she said. “We need to do something with the information, so I’m looking forward to expanding this work.”
