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Mistrust of medical research may discourage genetic testing in prostate cancer

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Article

According to the survey, 79% of Black men know that genetic information can help improve prostate cancer outcomes, yet 33% indicated that they would be unwilling or uncertain to provide DNA samples, even if it meant finding new treatment options.

Recent survey findings indicate that mistrust of medical research remains a concern among Black men and may negatively influence their decision to undergo genetic testing for prostate cancer.1

"Survey data underscores the importance of addressing health information privacy and security concerns to bridge this dramatic health divide and move us from disparity to discovery for all men,” says Merel Grey Nissenberg.

"Survey data underscores the importance of addressing health information privacy and security concerns to bridge this dramatic health divide and move us from disparity to discovery for all men,” says Merel Grey Nissenberg.

According to the survey, 79% of Black men know that genetic information can help improve prostate cancer outcomes, and 75% know that inherited gene mutations can increase their risk of prostate cancer. However, 33% indicated that they would be unwilling or uncertain to provide DNA samples, even if it meant finding new treatment options. Further, 64% cited concerns about the privacy and security of their DNA information if shared with medical institutions.

"Black men are at a disadvantage because they are underrepresented in valuable research that could impact their lives and the lives of their family members. Survey data underscores the importance of addressing health information privacy and security concerns to bridge this dramatic health divide and move us from disparity to discovery for all men,” said Merel Grey Nissenberg, president of the National Alliance of State Prostate Cancer Coalitions, in a news release on the results.1

In total, the survey, “Prostate Cancer and Black Men: From Disparity to Discovery,” included responses from 250 Black men who were polled between August 17-21, 2023. The online survey was commissioned by Advancing Cancer Treatment and the National Alliance of State Prostate Cancer Coalitions and fielded by the PARAGRAPH project in collaboration with Cint.

The findings underscore the need to address disparities in care, especially given that Black men are at higher risk of prostate cancer, says Heather Cheng, MD, PhD.

"Black men are disproportionately affected by prostate cancer, with more aggressive disease, and higher mortality rates versus White men. To address these disparities, we need to focus on enrolling and retaining Black men in prostate cancer clinical trials and observational studies—the length and quality of Black prostate cancer patients' lives are depending on it, and the lessons learned can benefit all patients with prostate cancer,” said Cheng, who is is the director of the Prostate Cancer Genetics Clinic, an associate professor in the Clinical Research Division at Fred Hutchinson Cancer Center, an associate professor in the Division of Hematology and Oncology at the University of Washington, and a co-lead investigator of the PROMISE Registry.

According to the news release, the PROMISE Registry (NCT04995198) is “a registry of prostate cancer patients participating in a research study to learn how genetic differences can affect patient outcomes.”1

The registry plans to enroll approximately 500 adult patients through all stages of prostate cancer. Patients will be followed-up for a minimum of 15 years. The primary outcome measure is the frequency of at least 1 germline pathogenic or likely pathogenic variant.2

"DNA may be a man's most powerful weapon in the fight against prostate cancer. A genetic database built from a racially diverse group of men is a critical step forward in prostate cancer research. We hope to bring personalized medicine to prostate cancer for all men, in the same way the research community has done for women with breast cancer,” added Channing Paller, MD, in the news release.1 Paller is a medical oncologist at Sibley Memorial Hospital, an associate professor of oncology at the Johns Hopkins University School of Medicine, and a co-lead investigator of the PROMISE Registry.

Primary results from the PROMISE Registry are expected in 2026.

References

1. 79% of Black men know genetic information can improve prostate cancer treatment; yet 33% uncertain or unwilling to share their information with researchers. News release. Advancing Cancer Treatment. November 15, 2023. Accessed November 20, 2023. https://www.prnewswire.com/news-releases/79-of-black-men-know-genetic-information-can-improve-prostate-cancer-treatment-yet-33-uncertain-or-unwilling-to-share-their-information-with-researchers-301988276.html

2. PROMISE Registry: A prostate cancer registry of outcomes and germline mutations for improved survival and treatment effectiveness. ClinicalTrials.gov. Last updated November 18, 2023. Accessed November 20, 2023. https://clinicaltrials.gov/study/NCT04995198

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