scholarly journals Information Avoidance, Self-affirmation, and Intentions to Receive Genomic Sequencing Results Among Members of an African Descent Cohort

2021 ◽  
Author(s):  
Emily B Peterson ◽  
Jennifer M Taber ◽  
William M P Klein
Keyword(s):  
African Descent ◽  
Moderating Effect ◽  
Baseline Survey ◽  
Genomic Sequencing ◽  
Carrier Status ◽  
Information Avoidance ◽  
Initial Cohort ◽  
Genomic Results ◽  
To Receive ◽  
Hispanic White

Abstract Background Information avoidance tendencies have been found to be associated with lower intentions to pursue medically actionable genomic sequencing results, but less so among individuals who engage more in spontaneous self-affirmation. Yet these results were obtained with a largely non-Hispanic White, high-SES cohort. Purpose To assess these variables, their magnitude, and their associations in an African-descent cohort as part of the same ClinSeq® exome sequencing program. Methods Participants reported levels of spontaneous self-affirmation, information avoidance, and intentions to receive three types of results – medically actionable, non-medically actionable, and carrier status as part of a baseline survey. Results Relative to the original, non-Hispanic White cohort, those in the African-descent cohort had higher levels of spontaneous self-affirmation and lower intentions of learning about carrier genomic results; they reported comparable levels of information avoidance and intentions to receive other results. Information avoidance was negatively associated with intention to receive non-actionable results in the African-descent cohort, as found in the initial cohort, with no moderating effect of spontaneous self-affirmation. Information avoidance, spontaneous self-affirmation, and their interaction were not associated with intentions to receive actionable results (contrary to findings in the initial cohort), or carrier results. Conclusions Individuals of African descent may engage in relatively more spontaneous self-affirmation, and do not appear to engage in more information avoidance. Their information avoidance tendencies were associated with pursuit of non-actionable sequencing results, with no moderating effect of self-affirmation, and were not associated with pursuit of actionable results or carrier results.

scholarly journals Pediatric Oncologists’ Experiences Returning and Incorporating Genomic Sequencing Results into Cancer Care

2021 ◽  
Vol 11 (6) ◽  
pp. 570
Author(s):  
Rebecca L. Hsu ◽  
Amanda M. Gutierrez ◽  
Sophie K. Schellhammer ◽  
Jill O. Robinson ◽  
Sarah Scollon ◽  
...  
Keyword(s):  
Cancer Care ◽  
Cancer Genomics ◽  
Emotional Responses ◽  
Genetic Counselors ◽  
Genomic Sequencing ◽  
Uncertain Information ◽  
Time Points ◽  
Genomic Results

Pediatric oncologists’ perspectives around returning and incorporating tumor and germline genomic sequencing (GS) results into cancer care are not well-described. To inform optimization of cancer genomics communication, we assessed oncologists’ experiences with return of genomic results (ROR), including their preparation/readiness for ROR, collaboration with genetic counselors (GCs) during ROR, and perceived challenges. The BASIC3 study paired pediatric oncologists with GCs to return results to patients’ families. We thematically analyzed 24 interviews with 12 oncologists at two post-ROR time points. Oncologists found pre-ROR meetings with GCs and geneticists essential to interpreting patients’ reports and communicating results to families. Most oncologists took a collaborative ROR approach where they discussed tumor findings and GCs discussed germline findings. Oncologists perceived many roles for GCs during ROR, including answering families’ questions and describing information in lay language. Challenges identified included conveying uncertain information in accessible language, limits of oncologists’ genetics expertise, and navigating families’ emotional responses. Oncologists emphasized how GCs’ and geneticists’ support was essential to ROR, especially for germline findings. GS can be successfully integrated into cancer care, but to account for the GC shortage, alternative ROR models and access to genetics resources will be needed to better support families and avoid burdening oncologists.

scholarly journals Implementing genomic screening in diverse populations

2021 ◽  
Vol 13 (1) ◽  
Author(s):  
Noura S. Abul-Husn ◽  
Emily R. Soper ◽  
Giovanna T. Braganza ◽  
Jessica E. Rodriguez ◽  
Natasha Zeid ◽  
...  
Keyword(s):  
Screening Program ◽  
African Ancestry ◽  
Genomic Medicine ◽  
European Ancestry ◽  
Transthyretin Amyloidosis ◽  
Medicine Research ◽  
Screening Programs ◽  
Genomic Screening ◽  
Genomic Results ◽  
To Receive

Abstract Background Population-based genomic screening has the predicted ability to reduce morbidity and mortality associated with medically actionable conditions. However, much research is needed to develop standards for genomic screening and to understand the perspectives of people offered this new testing modality. This is particularly true for non-European ancestry populations who are vastly underrepresented in genomic medicine research. Therefore, we implemented a pilot genomic screening program in the BioMe Biobank in New York City, where the majority of participants are of non-European ancestry. Methods We initiated genomic screening for well-established genes associated with hereditary breast and ovarian cancer syndrome (HBOC), Lynch syndrome (LS), and familial hypercholesterolemia (FH). We evaluated and included an additional gene (TTR) associated with hereditary transthyretin amyloidosis (hATTR), which has a common founder variant in African ancestry populations. We evaluated the characteristics of 74 participants who received results associated with these conditions. We also assessed the preferences of 7461 newly enrolled BioMe participants to receive genomic results. Results In the pilot genomic screening program, 74 consented participants received results related to HBOC (N = 26), LS (N = 6), FH (N = 8), and hATTR (N = 34). Thirty-three of 34 (97.1%) participants who received a result related to hATTR were self-reported African American/African (AA) or Hispanic/Latinx (HL), compared to 14 of 40 (35.0%) participants who received a result related to HBOC, LS, or FH. Among the 7461 participants enrolled after the BioMe protocol modification to allow the return of genomic results, 93.4% indicated that they would want to receive results. Younger participants, women, and HL participants were more likely to opt to receive results. Conclusions The addition of TTR to a pilot genomic screening program meant that we returned results to a higher proportion of AA and HL participants, in comparison with genes traditionally included in genomic screening programs in the USA. We found that the majority of participants in a multi-ethnic biobank are interested in receiving genomic results for medically actionable conditions. These findings increase knowledge about the perspectives of diverse research participants on receiving genomic results and inform the broader implementation of genomic medicine in underrepresented patient populations.

scholarly journals Association between willingness to receive the COVID-19 vaccine and sources of health information among Japanese workers: a cohort study

2021 ◽  
Author(s):  
Ko Hiraoka ◽  
Tomohisa Nagata ◽  
TAKAHIRO MORI ◽  
Hajime Ando ◽  
Ayako Hino ◽  
...  
Keyword(s):  
Cohort Study ◽  
Health Information ◽  
Herd Immunity ◽  
Baseline Survey ◽  
Vaccination Programs ◽  
Japanese Workers ◽  
Company Policy ◽  
Sources Of Health Information ◽  
To Receive

Background: It is important to achieve herd immunity by vaccinating as many people as possible to end the COVID-19 pandemic. We investigated the relationship between willingness to receive vaccination and sources of health information among those who did not want to be vaccinated against COVID-19. Methods: This prospective cohort study collected data using a self-administered questionnaire survey. The baseline survey was conducted during December 22-25, 2020, and the follow-up survey during February 18-19, 2021. Participants were aged 20-65 years and worked at the time of the baseline survey (N=33,087). After excluding 6,051 invalid responses, we included responses from 27,036 participants at baseline. In total, 19,941 people responded to the follow-up survey (74% follow-up rate). We excluded 7,415 participants who answered "yes" to the question "If a COVID-19 vaccine becomes available, would you like to get it?" in the baseline survey. We finally analyzed 12,526 participants. Results: The odds ratio for change in willingness to be vaccinated from "no" to "yes" differed by source of health information. Compared with workers that used TV as a source of information, significantly fewer people who reported getting information from the Internet and friends/colleagues were willing to get the vaccine. Conclusions: It is important to approach workers who do not watch TV when implementing workplace vaccination programs. It is likely that willingness to be vaccinated can be increased through an active company policy whereby the top management recommend vaccination, coupled with an individual approach by occupational health professionals.

scholarly journals Racial and ethnic disparities in discharge to rehabilitation following traumatic brain injury

2015 ◽  
Vol 122 (3) ◽  
pp. 595-601 ◽  
Author(s):  
Ashley D. Meagher ◽  
Christopher A. Beadles ◽  
Jennifer Doorey ◽  
Anthony G. Charles
Keyword(s):  
Traumatic Brain Injury ◽  
Brain Injury ◽  
Racial Disparities ◽  
Subgroup Analysis ◽  
Insurance Coverage ◽  
Inpatient Rehabilitation ◽  
Discharge Destination ◽  
Black Patients ◽  
To Receive ◽  
Hispanic White

OBJECT Disparities in access to inpatient rehabilitation services after traumatic brain injury (TBI) have been identified, but less well described is the likelihood of discharge to a higher level of rehabilitation for Hispanic or black patients compared with non-Hispanic white patients. The authors investigate racial disparities in discharge destination (inpatient rehabilitation vs skilled nursing facility vs home health vs home) following TBI by using a nationwide database and methods to address racial differences in prehospital characteristics. METHODS Analysis of discharge destination for adults with moderate to severe TBI was performed using National Trauma Data Bank data for the years 2007–2010. The authors performed propensity score weighting followed by ordered logistic regression in their analytical sample and in a subgroup analysis of older adults with Medicare. Likelihood of discharge to a higher level of rehabilitation based on race/ethnicity accounting for prehospital and in-hospital variables was determined. RESULTS The authors identified 299,205 TBI incidents: 232,392 non-Hispanic white, 29,611 Hispanic, and 37,202 black. Propensity weighting resulted in covariate balance among racial groups. Hispanic (adjusted OR 0.71, 95% CI 0.68–0.75) and black (adjusted OR 0.94, 95% CI 0.91–0.97) populations were less likely to be discharged to a higher level of rehabilitation than were non-Hispanic whites. The subgroup analysis indicated that Hispanic (adjusted OR 0.79, 95% CI 0.71–0.86) and black (OR 0.87, 95% CI 0.81–0.94) populations were still less likely to receive a higher level of rehabilitation, despite uniform insurance coverage (Medicare). CONCLUSIONS Adult Hispanic and black patients with TBI are significantly less likely to receive intensive rehabilitation than their non-Hispanic white counterparts; notably, this difference persists in the Medicare population (age ≥ 65 years), indicating that uniform insurance coverage alone does not account for the disparity. Given that insurance coverage and a wide range of prehospital characteristics do not eliminate racial disparities in discharge destination, it is crucial that additional unmeasured patient, physician, and institutional factors be explored to eliminate them.

scholarly journals Implementing genomic screening in diverse populations

2021 ◽  
Author(s):  
Noura S. Abul-Husn ◽  
Emily R. Soper ◽  
Giovanna T. Braganza ◽  
Jessica E. Rodriguez ◽  
Natasha Zeid ◽  
...  
Keyword(s):  
Screening Program ◽  
African Ancestry ◽  
Genomic Medicine ◽  
European Ancestry ◽  
Transthyretin Amyloidosis ◽  
Medicine Research ◽  
Screening Programs ◽  
Genomic Screening ◽  
Genomic Results ◽  
To Receive

ABSTRACTBackgroundPopulation-based genomic screening has the predicted ability to reduce morbidity and mortality associated with medically actionable conditions. However, much research is needed to develop standards for genomic screening, and to understand the perspectives of people offered this new testing modality. This is particularly true for non-European ancestry populations who are vastly underrepresented in genomic medicine research. Therefore, we implemented a pilot genomic screening program in the BioMe Biobank in New York City, where the majority of participants are of non-European ancestry.MethodsWe initiated genomic screening for well-established genes associated with hereditary breast and ovarian cancer syndrome (HBOC), Lynch syndrome (LS), and familial hypercholesterolemia (FH). We evaluated and included an additional gene (TTR) associated with hereditary transthyretin amyloidosis (hATTR), which has a common founder variant in African ancestry populations. We evaluated the characteristics of 74 participants who received results associated with these conditions. We also assessed the preferences of 7,461 newly enrolled BioMe participants to receive genomic results.ResultsIn the pilot genomic screening program, 74 consented participants received results related to HBOC (N=26), LS (N=6), FH (N=8), and hATTR (N=34). Thirty-three of 34 (97.1%) participants who received a result related to hATTR were self-reported African/African American (AA) or Hispanic/Latinx (HL), compared to 14 of 40 (35.0%) participants who received a result related to HBOC, LS, or FH. Among 7,461 participants enrolled after the BioMe protocol modification to allow the return of genomic results, 93.4% indicated that they would want to receive results. Younger participants, women, and HL participants were more likely to opt to receive results.ConclusionsThe addition of TTR to a pilot genomic screening program meant that we returned results to a higher proportion of AA and HL participants, in comparison with genes traditionally included in genomic screening programs in the U.S. We found that the majority of participants in a multi-ethnic biobank are interested in receiving genomic results for medically actionable conditions. These findings increase knowledge about the perspectives of diverse research participants on receiving genomic results, and inform the broader implementation of genomic medicine in underrepresented patient populations.

scholarly journals Racial Differences in the Pathway to Diagnosis of Alzheimer's Disease and Related Dementias

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 280-280
Author(s):  
James Burke ◽  
Matthew Dupre ◽  
Se Hee Min ◽  
Ruth Anderson ◽  
David Page ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Older Adults ◽  
Alzheimer's Disease ◽  
Racial Differences ◽  
Primary Diagnosis ◽  
Health Records ◽  
Black And White ◽  
Clinical Encounters ◽  
To Receive ◽  
Hispanic White

Abstract This study examined differences in the pathway to diagnosis of Alzheimer's disease and related dementias (ADRD) between Black and White older adults. Using electronic health records from a large health system, we included 2,085 non-Hispanic Black and 6,269 non-Hispanic White older adults with a final/primary diagnosis of ADRD between 2014 and 2020. Black older adults were more likely to receive the ADRD diagnosis from a primary care provider (35.4% vs. 29.8%), during a hospital admission (19.5% vs. 13.6%), or during an emergency department visit (4.2% vs. 2.0%); but were less likely to be diagnosed by an ADRD specialist (31.6% vs. 45.2%). Black older adults had nearly twice as many clinical encounters in the two years prior to the ADRD diagnosis than their White counterparts (43 vs. 26). Despite having more clinical encounters, Black older adults were more likely to be at a later stage when diagnosed than White older adults.

scholarly journals Hiding from the Truth: When and How Cover Enables Information Avoidance

2020 ◽  
Author(s):  
Kaitlin Woolley ◽  
Jane L Risen
Keyword(s):  
Public And Private ◽  
Information Avoidance ◽  
Decision Context ◽  
Intrapersonal Conflict ◽  
Consumer Choices ◽  
Financial Consequences ◽  
To Receive ◽  
Practical Implications

Abstract More information is available today than ever before, yet at times consumers choose to avoid it. Even with useful information (I should find out), people may prefer ignorance (But I don’t want to). Seven studies (N = 4,271) and five supplemental studies (N = 3,013) apply the concept of “cover” to information avoidance for consumer choices with real financial consequences. More consumers avoid information with cover—that is, when they can attribute their decision to another feature of a product or decision context rather than to information they want to avoid. Cover increases avoidance when consumers face intrapersonal conflict—when consumers want to avoid information that they believe they should receive (e.g., calorie information). As such, the effect of cover is reduced by decreasing want–should conflict, whether by reducing the should preference to receive information or the want preference to avoid it. Furthermore, cover increases avoidance by helping consumers justify a decision to themselves: avoidance increases only when people can attribute their decision to a relevant (vs. irrelevant) product feature and operates in public and private settings. Together, this research offers theoretical insights into consumers’ information avoidance and how cover itself operates, with practical implications for marketers.

A phase I study of IMC-11F8, a fully human anti-epidermal growth factor receptor (EGFR) IgG1 monoclonal antibody in patients with solid tumors. Interim results

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 3024-3024 ◽  
Author(s):  
B. Kuenen ◽  
E. Witteveen ◽  
R. Ruijter ◽  
A. Ervin-Haynes ◽  
M. Tjin-A-ton ◽  
...  
Keyword(s):  
Monoclonal Antibody ◽  
Phase I ◽  
Solid Tumors ◽  
Stable Disease ◽  
Phase I Study ◽  
Growth Factor Receptor ◽  
Maximum Tolerated Dose ◽  
Igg1 Monoclonal Antibody ◽  
Initial Cohort ◽  
To Receive

3024 Background: This ongoing phase I study is being conducted to determine the safety profile and recommended dose of IMC-11F8, a fully-human IgG1 monoclonal antibody that targets the EGFR. Methods: Patients (pts) with advanced solid tumors who are refractory to or have no available standard therapy are eligible to receive IMC-11F8 intravenously either weekly or every other week for 6 weeks (1 cycle). The initial cohort of patients will receive 100 mg of IMC-11F8. In the absence of a dose-limiting toxicity (DLT), dose escalation will be 200, 400, 600, 800, and 1000 mg in successive cohorts. Prior to the initial cycle, pts receive one IMC-11F8 infusion at their assigned cohort followed by a 2-week pharmacokinetic (PK) period. Pts with stable disease or better after cycle 1 are eligible to receive additional cycles of IMC-11F8. Results: 31 of 40 pts have been enrolled in the 100-, 200-, 400-, 600-, and 800-mg cohorts. Pt characteristics are M/F 20/11, median age 58 years (37 - 76), median ECOG score 1 (0–2). No DLTs have been observed. Only grade 1/2 skin rashes were reported. The most frequent adverse events were nausea, vomiting, fatigue, and headache. No infusion reactions were observed. 2 pts (1 confirmed) have achieved a PR, 1 pt with melanoma in the 200-mg cohort with 39+ weeks of weekly IMC-11F8 treatment and 1 pt with rectal cancer in the 400-mg cohort with 20+ weeks of IMC-11F8 administered every other week. 5 pts in the 200- to 600-mg cohorts have stable disease and have received from 11+ to 35+ weeks of IMC-11F8 treatment. A noncompartmental analysis of 20 pts demonstrated that IMC-11F8 exhibits nonlinear PK. As IMC-11F8 escalated from 100 to 600 mg, T1/2 increased from 67 to 84 hrs, Cmax increased from 30 to 368 μg/mL, AUCinf increased from 1753 to 67295, and CL decreased from 57.0 to 8.9 mL/hr. Conclusions: These interim results indicate that IMC-11F8 is well tolerated in this patient population. Although a maximum tolerated dose has not been established, IMC-11F8 has shown activity at two different dose levels. [Table: see text]

scholarly journals Engaging Patients in Precision Oncology: Development and Usability of a Web-Based Patient-Facing Genomic Sequencing Report

2020 ◽  
pp. 307-318 ◽  
Author(s):  
Ilana B. Solomon ◽  
Sarah McGraw ◽  
Jenny Shen ◽  
Adem Albayrak ◽  
Gil Alterovitz ◽  
...  
Keyword(s):  
Genetic Counseling ◽  
Focus Groups ◽  
Family Members ◽  
Return Of Results ◽  
Genomic Sequencing ◽  
Precision Oncology ◽  
Web Based ◽  
Genetic Literacy ◽  
Treatment Information ◽  
Genomic Results

PURPOSE Evidence-based somatic and germline sequencing has transformed cancer care and improves patient outcomes. However, patients’ low genetic literacy and misunderstanding of their own genomic results poses a threat to the realization of precision oncology. To optimize patient genomic comprehension, we developed a Web-based, patient-directed, genomic sequencing education and return-of-results tool, HOPE-Genomics. METHODS The HOPE-Genomics prototype included somatic and germline sequencing results, embedded multimedia genomic education, and interactive features (eg, request for genetic counseling). Between January and April 2018, we elicited feedback on tool usability and comprehensiveness through participant surveys, 4 focus groups of patients with cancer and their family members, and 3 provider focus groups (comprising 8 patients, 5 family members, and 19 providers). RESULTS We identified themes in patient/family tool-related responses, including the desire to view a patient-friendly report, a desire to receive multiple types of genomic information (eg, prognostic and uncertain), high acceptability of report content, and interest in tool-enabled access to genetic counseling. Major themes from the clinician focus groups included believing the tool could help patients formulate questions and facilitate patients’ communication of results to family members. However, there were diverse responses from all participants in terms of tool implementation (ie, timing and nature of report release). Some participants preferred report release before meeting with the provider, and others preferred it during the appointment. Additionally, some clinicians were concerned about providing prognostic and treatment information through the tool. CONCLUSION There was high acceptability and interest from patients, family members, and providers in a patient-directed genomics report. Future work will determine whether direct-to-patient reporting of genomic results improves patient knowledge, care engagement, and compliance with genomically guided interventions.

scholarly journals Genomic Sequencing Results Disclosure in Diverse and Medically Underserved Populations: Themes, Challenges, and Strategies from the CSER Consortium

2021 ◽  
Vol 11 (3) ◽  
pp. 202
Author(s):  
Sabrina A. Suckiel ◽  
Julianne M. O’Daniel ◽  
Katherine E. Donohue ◽  
Katie M. Gallagher ◽  
Marian J. Gilmore ◽  
...  
Keyword(s):  
Underserved Populations ◽  
Evidence Base ◽  
Medically Underserved ◽  
Genomic Sequencing ◽  
Conference Calls ◽  
Community Stakeholders ◽  
Results Disclosure ◽  
Genomic Results ◽  
Unexpected Findings ◽  
Challenges And Strategies

Genomic sequencing results need to be effectively communicated across all populations and practice settings. Projects in the Clinical Sequencing Evidence-Generating Research (CSER) consortium enroll diverse racial/ethnic and medically underserved participants across various clinical contexts. This article explores a set of CSER results disclosure cases to expand the evidence base on experiences returning genomic results. Case details were collected using a structured set of questions. We identified common themes in the case set, and assessed challenges and strategies in achieving six relevant results disclosure objectives. CSER-affiliated patient/community stakeholder impressions of the findings were solicited via video conference calls. Seventeen cases across six CSER projects were included. Case themes sorted into four categories: (1) factors influencing participant understanding, (2) participant emotional response, (3) disease burden, and (4) logistical challenges. Challenges meeting results disclosure objectives included a lack of dialogue, health literacy level, unexpected findings, and complex concepts. Strategies were consistent with traditional genetic counseling practice, but also highlighted approaches being evaluated in CSER projects. Patient/community stakeholders supported the identified themes and provided additional suggestions to improve patient understanding and engagement. These experiences add valuable insights into adapting genomic results disclosure practices to best serve all patient populations.

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