Testing Three Different Cancer Genetics Registry Recruitment Methods with Hispanic Cancer Patients and Their Family Members Previously Registered in Local Cancer Registries in Texas

2008 ◽  
Vol 11 (4) ◽  
pp. 215-223 ◽  
Author(s):  
Amelie G. Ramirez ◽  
Alexander R. Miller ◽  
Kipling Gallion ◽  
Sandra San Miguel de Majors ◽  
Patricia Chalela ◽  
...  
2021 ◽  
Vol 61 (3) ◽  
pp. 681-682
Author(s):  
Gwenyth Day ◽  
Marilyn Swinton ◽  
Danielle Bear ◽  
Peter Phung ◽  
Allegra Bell ◽  
...  

2021 ◽  
pp. 003022282110327
Author(s):  
Souvik Mondal

Telling the truth to the terminal-stage cancer patients differs socio-culturally based on the priorities assigned to patients’ autonomy and the principles of beneficence and non-maleficence. After conducting in-depth interviews with 108 terminal-stage adult cancer patients, 306 family members, and 25 physicians, in private and public hospitals in both rural and urban areas, in the state of West Bengal, India it has been found that even though 85.60% of the patients prefer full disclosure, only 22.03% are actually informed. Though demographic characteristics, like age, gender, education etc., have marginal influences over the pattern of truth-telling, the main factor behind non-disclosure is the family members’ preference for principles of beneficence and non-maleficence over patient autonomy. Hence, only 9.32% of those 118 patients’ family members have agreed to full disclosure. Physicians comply with this culture of non-disclosure as family, in India, is the centre of decision-making and acts as the primary unit of care.


2017 ◽  
Vol 16 (3) ◽  
pp. 447-457 ◽  
Author(s):  
Benjamin Derbez ◽  
Antoine de Pauw ◽  
Dominique Stoppa-Lyonnet ◽  
Sandrine de Montgolfier

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 10508-10508
Author(s):  
Ying L Liu ◽  
Anna Maio ◽  
Yelena Kemel ◽  
Erin E. Salo-Mullen ◽  
Margaret Sheehan ◽  
...  

10508 Background: Disparities in access to germline testing for cancer patients (pts) have been demonstrated; however, disparities in post-testing care are unknown. We sought to evaluate germline findings and subsequent genetic counseling/care in cancer pts undergoing tumor-germline sequencing to explore differences by self-reported ancestry. Methods: Pan-cancer pts were prospectively consented to tumor-normal sequencing via a custom NGS panel (MSK-IMPACT) from 1/2015-12/2019 inclusive of germline analysis up to 88 genes. Germline analysis was performed as a research non-billable test in 97.5% of cases. Referral to clinical genetics service (CGS) was recommended for all pts with a new positive (likely pathogenic/pathogenic) germline variant (PV). Ancestry was defined using self-reported Federal definitions of race/ethnicity and designations of Ashkenazi Jewish (AJ) ancestry. Pts were categorized into mutually exclusive groups: AJ, White, Non-White (Asian, Black/African American, Hispanic, Other), and unknown. All pts self-identifying as Hispanic were classified as such, regardless of race. Abstracted data on germline findings and downstream CGS follow-up were compared across groups using non-parametric statistical tests. Results: Among the 15,775 pts in this cohort (59.6% White, 15.7% AJ, 20.5% Non-White [6.9% Asian, 6.8% Black, 6.7% Hispanic, 0.1% Other], and 4.2% unknown), 2663 (17%) had a PV. AJ pts had the highest rates of PV (n = 683, 27.6%), and Non-White pts had a lower proportion of PV (n = 433, 13.6%) compared to Whites (n = 1451, 15.5%), p < 0.01, with differences mostly due to increased prevalence of moderate/low penetrance variants in White and AJ pts . These findings were consistent across multiple tumor types. Prior knowledge of the PV (424/2663, 16%) was more common in Non-White (19.9%) and AJ (19.2%) than White pts (13.4%), p < 0.01. Among 2239 pts with new PV, all were referred to CGS, and 1652 (73.8%) pts were seen. Non-White pts had lower rates of completing visits (67.7%) than White (73.7%) and AJ pts (78.8%), p < 0.01, with the lowest rates occurring in Black (63%) and Hispanic (68.1%) pts. All pts without a visit (n = 587) received a close out letter including 139 pts (6.2% of pts with new PV) who had no documentation of receipt of results in the medical record. Higher rates of non-disclosure were observed in Non-White (6.7%) compared to White (5.4%) and AJ (3.4%) pts with new PV, p = 0.032; non-disclosure did not vary by gene penetrance. There was a non-significant trend towards lower rates of cascade testing at CGS in Asian and Black pts with ongoing analysis. Conclusions: Even when traditional barriers to genetic testing were minimized, Non-White pts were less likely to receive recommended cancer genetics follow-up for subsequent cancer risk counseling, with potential implications for oncological care, cancer risk reduction, and at-risk family members.


BMC Cancer ◽  
2018 ◽  
Vol 18 (1) ◽  
Author(s):  
Yang Bai ◽  
Liang-Dong Li ◽  
Jun Li ◽  
Xin Lu

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