Health Disparities in Germline Genetic Testing for Cancer Susceptibility

Parikh, Divya Ahuja; Dickerson, James; Kurian, Allison W.

doi:10.1007/s12609-020-00354-3

Cited by 7 publications

(8 citation statements)

References 65 publications

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“…The interviewees’ concerns that hereditary cancer population genetic testing is not acceptable for all patients is important, given the growing evidence for disparities in hereditary cancer genetic testing based on racial/ethnic group and socioeconomic status. 37 Although IiP reduced financial and logistical barriers for some participants, there may still be gaps in educational outreach and engagement with all members of the initiative’s community, which is recommended to reduce disparities in genetic testing and genetic research. 38 , 39 …”

Section: Discussionmentioning

confidence: 99%

Characteristics and experiences of patients from a community-based and consumer-directed hereditary cancer population screening initiative

Greve

Odom

Pudner

et al. 2022

Human Genetics and Genomics Advances

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Summary A clinical hereditary cancer population screening initiative, called Information is Power, began in North Alabama in 2015. After 4 years of the initiative, we were interested in exploring (1) the characteristics and motivations for patients who self-refer to population genetic testing, (2) how patients make decisions on testing, (3) what patients do with results, and (4) patient perceptions of benefits and limitations after undergoing population genetic testing. Patients who consented to research recontact at time of test ordering were sent an electronic survey with the option for a follow-up phone interview. Among the 2,918 eligible patients, 239 responded to the survey and 19 completed an interview. Survey and interview participants were highly educated information seekers motivated by learning more about their health. Those who were previously interested in hereditary cancer testing reported barriers were cost and insurance coverage, access to testing, and uncertainty how results could impact their health. Many participants (77%) communicated with family and friends about their decision to test and communicated about test results. Fewer participants (23%) discussed the decision to test with their healthcare providers; however, 58% of participants discussed their test results with a healthcare provider. Most people (96%) with negative results accurately recalled their results. In contrast, three out of 11 positive results for heterozygous MUTYH , PALB2 , and BRCA2 reported receiving negative results. This study contributes to knowledge on population genetic testing and may guide other population genetic testing programs as they develop enrollment materials and educational materials and consider downstream needs of population genetic testing participants.

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Section: Discussionmentioning

confidence: 99%

Characteristics and experiences of patients from a community-based and consumer-directed hereditary cancer population screening initiative

Greve

Odom

Pudner

et al. 2022

Human Genetics and Genomics Advances

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“…Concordant studies have shown that the majority of PCa patients receiving germline testing are NHW men [ 15 , 16 ], with as high as 95% being English-speaking men [ 16 ]. Underrepresentation of racial/ethnic minorities in germline testing is not unique to PCa and exists among patients with various other malignancies [ 17 – 19 ].…”

Section: Disparities In Outcomes Of Men With Pcamentioning

confidence: 99%

Disparities in germline testing among racial minorities with prostate cancer

Weise,

Shaya,

Javier-Desloges

et al. 2021

Prostate Cancer Prostatic Dis

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“…There are marked disparities in delivering genetic counseling and genetic testing services across sociodemographic groups 9–14 . The Cancer Health Assessment Reaching Many (CHARM) study developed and tested a multimodal intervention designed to increase access to clinically indicated genetic testing and to narrow inequities in cancer genetic service delivery 15 .…”

Section: Introductionmentioning

confidence: 99%

“…However, with a few notable exceptions, these initiatives have engaged “early test adopters” and we have limited understanding of healthcare utilization patterns following cancer genetic testing in populations who traditionally face barriers in accessing genetic servies 13,22 . Whether returning genetic test results with no clear risk‐management implications, for instance variants of uncertain significance (VUS), leads to unnecessary risk management utilization due to patient anxiety or clinician mismanagement is another question of interest, particularly given health care resource constraints these populations already experience 14,23,24 …”

Section: Introductionmentioning

confidence: 99%

Risk management actions following genetic testing in the Cancer Health Assessments Reaching Many (CHARM) Study: A prospective cohort study

Guo,

Knerr,

Kauffman

et al. 2023

Cancer Medicine

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BackgroundGenetic testing can identify cancer risk early, enabling prevention and early detection. We describe use of risk management interventions following genetic testing in the Cancer Health Assessment Reaching Many (CHARM) study. CHARM assessed risk and provided genetic testing to low income, low literacy, and other underserved populations that historically face barriers to accessing cancer genetic services.MethodsCHARM was implemented in Kaiser Permanente Northwest (KPNW) and Denver Health (DH) between 2018 and 2020. We identified post‐testing screening (mammography, breast MRI, colonoscopy) and surgical (mastectomy, oophorectomy) procedures using electronic health records. We examined utilization in participants who did and did not receive actionable risk management recommendations from study genetic counselors following national guidelines.ResultsCHARM participants were followed for an average of 15.4 months (range: 0.4–27.8 months) after results disclosure. Less than 2% (11/680) received actionable risk management recommendations (i.e., could be completed in the initial years following testing) based on their test result. Among those who received actionable recommendations, risk management utilization was moderate (54.5%, 6/11 completed any procedure) and varied by procedure (mammogram: 0/3; MRI: 2/4; colonoscopy: 4/5; mastectomy: 1/5; oophorectomy: 0/3). Cancer screening and surgery procedures were rare in participants without actionable recommendations.ConclusionThough the number of participants who received actionable risk management recommendations was small, our results suggest that implementing CHARM's risk assessment and testing model increased access to evidence‐based genetic services and provided opportunities for patients to engage in recommended preventive care, without encouraging risk management overuse.

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Health Disparities in Germline Genetic Testing for Cancer Susceptibility

Cited by 7 publications

References 65 publications

Characteristics and experiences of patients from a community-based and consumer-directed hereditary cancer population screening initiative

Characteristics and experiences of patients from a community-based and consumer-directed hereditary cancer population screening initiative

Disparities in germline testing among racial minorities with prostate cancer

Risk management actions following genetic testing in the Cancer Health Assessments Reaching Many (CHARM) Study: A prospective cohort study

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