Lessons from the river: identifying factors that influence the comprehension of genetics research in a Yup'ik Eskimo community

Thesis (M.S.) University of Alaska Fairbanks, 2009"The Center for Alaska Native Health Research (CANHR) follows a Community-Based Participatory Research (CBPR) approach to study genetic, nutritional, behavioral and cultural protective factors for obesity and Type 2 diabetes in Yup'ik Eskimo communities. As a multidisciplinary center, investigators have returned results of many of their research projects to participants and participating communities. However, traditionally, genetics research results are only returned to participants under specific conditions, which are not necessarily compatible with a CBPR approach. I ask how CANHR can improve its dissemination efforts, especially in the area of genetics research. I identify factors that influence how community members receive and understand health information, including genetics information. This study uses a grounded theory approach to qualitatively analyze interviews and focus group discussions with Yup'ik community members, identify themes and construct a theoretical narrative. The primary factors that emerged include communication pathways (ways in which information is transmitted in the community); health beliefs (what people already know and believe about health); and social location (a person's role in the community). I examine each of these through the framework of a river metaphor to provide recommendations for improving CANHR's dissemination efforts with the communities, including genetics research results"--Leaf iii1. Introduction to study -- 2. Background and literature review -- 3. Methods -- 4. Findings -- 5. Discussion -- References -- Appendix

A Weakly Supervised Classifier and Dataset of White Supremacist Language

We present a dataset and classifier for detecting the language of white supremacist extremism, a growing issue in online hate speech. Our weakly supervised classifier is trained on large datasets of text from explicitly white supremacist domains paired with neutral and anti-racist data from similar domains. We demonstrate that this approach improves generalization performance to new domains. Incorporating anti-racist texts as counterexamples to white supremacist language mitigates bias.Comment: ACL 2023 shor

Predictors of health-related quality of life in patients with colorectal cancer

<p>Abstract</p> <p>Background</p> <p>Most studies that have identified variables associated with the health-related quality of life (HRQL) of patients with colorectal cancer have been cross-sectional or included patients with other diagnoses. The objectives of this study were to identify predictors of HRQL in patients with colorectal cancer and interpret the clinical importance of the results.</p> <p>Methods</p> <p>We conducted a population-based longitudinal study of patients identified through three regions of the California Cancer Registry. Surveys were completed by 568 patients approximately 9 and 19 months post-diagnosis. Three HRQL outcomes from the Functional Assessment of Cancer Therapy – Colorectal (FACT-C) were evaluated: social/family well-being (SWB), emotional well-being (EWB) and the Trial Outcome Index (TOI), which is a colorectal cancer-specific summary measure of physical function and well-being. Sociodemographic, cancer/health, and healthcare variables were assessed in multivariable regression models. We computed the difference in predicted HRQL scores corresponding to a large difference in a predictor variable, defined as a 1 standard deviation difference for interval variables or the difference relative to the reference category for nominal variables. The effect of an explanatory variable on HRQL was considered clinically meaningful if the predicted score difference was at least as large as the minimally important difference.</p> <p>Results</p> <p>Common predictors of better TOI, SWB and EWB were better general health and factors related to better perceived quality of cancer care. Predictor variables in addition to general health and perceived quality of care were identified only for SWB. Being married/living as married was associated with better SWB, whereas being male or of Hispanic ethnicity was associated with worse SWB. Among the sociodemographic, cancer/health, and healthcare variables evaluated, only Hispanic ethnicity had a clinically meaningful effect on an HRQL outcome.</p> <p>Conclusion</p> <p>Our findings, particularly the information on the clinical importance of predictor variables, can help clinicians identify patients who may be at risk for poor future HRQL. Potentially modifiable factors were related to perceived quality of cancer care; thus, future research should evaluate whether improving these factors improves HRQL.</p

Identity Construction in a Misogynist Incels Forum

Online communities of involuntary celibates (incels) are a prominent source of misogynist hate speech. In this paper, we use quantitative text and network analysis approaches to examine how identity groups are discussed on incels.is, the largest black-pilled incels forum. We find that this community produces a wide range of novel identity terms and, while terms for women are most common, mentions of other minoritized identities are increasing. An analysis of the associations made with identity groups suggests an essentialist ideology where physical appearance, as well as gender and racial hierarchies, determine human value. We discuss implications for research into automated misogynist hate speech detection.Comment: Workshop on Online Abuse and Harms (WOAH) 202

Demographics and survival of AIDS cases with cancer, Washington, DC, 1996-2006

Background Washington, DC (DC) has one of the highest HIV/AIDS rates in the U.S and cancer is the second leading cause of death among DC residents. This study sought to examine the demographic characteristics and survival of persons with AIDS defining cancers (ADCs) compared to those with non-AIDS defining cancers (NADCs) between the early HAART era (1996-2001) and the late HAART era (2002-2006) in DC. Methods Cases reported from 1996-2006 to the DC Cancer Registry and the AIDS Surveillance Registry were linked using a probabilistic matching algorithm. Cases were included if the cancer occurred from 4 months to 60 months post-AIDS diagnosis and were stratified into ADCs and NADCs for analyses. Cancer diagnoses were stratified into the early and late HAART eras to compare the availability of HAART on the distribution of cancer type. Kaplan-Meier survival analysis and adjusted Cox proportional hazards regression were used to assess survival time and risk of death by cancer type. Results From 1996-2006, among 8,800 AIDS cases, 300 (3.4%) cases had a cancer diagnosis. NADCs accounted for 51% of cancers and were significantly more likely to be diagnosed with AIDS (p\u3c0.0001) and cancer (p\u3c0.0001) at 40 years or older and had a significantly longer median time from AIDS to cancer diagnosis (2.46 vs. 1.75 years, p=0.01) compared to ADCs. The most common ADCs were Kaposi sarcoma (40%) and non-Hodgkin lymphoma (NHL) (44%); the most common NADC cases were lung (20%), Hodgkin lymphoma (8%) and anal (8%) cancer. ADCs accounted for 56% of cancer cases in the late-HAART as compared to the early-HAART period (45%). Mortality within the first year of cancer diagnosis was similar (ADC 41% vs. NADC 37%) and no statistical difference in survival time was observed. In the adjusted model, NHL and lung cases were significantly more likely to die as compared to other cancers (NHL HR=3.06; Lung HR=3.44). Conclusions In DC, despite high HIV/AIDS and cancer prevalence, only a small proportion of AIDS cases also develop cancer with ADCs and NADCs being equally common. HAART availability does not seem to have altered survival among ADCs and NADCs. Survival among NHL cases was relatively low reflecting the need for increased access to care among HIV+ persons. NADC cases are most likely developing cancers related to advancing age with higher proportions of lung cancers being observed. Public health efforts should focus on lung cancer prevention and continued monitoring of HIV-infected persons for cancers

Renoprotective Effect of Agalsidase Alfa: A Long-Term Follow-Up of Patients with Fabry Disease

Fabry disease is a rare lysosomal storage disorder caused by mutations in the GLA gene, which, without treatment, can cause significant renal dysfunction. We evaluated the effects of enzyme replacement therapy with agalsidase alfa on renal decline in patients with Fabry disease using data from the Fabry Outcome Survey (FOS) registry. Male patients with Fabry disease aged >16 years at agalsidase alfa start were stratified by low (0.5 g/24 h) baseline proteinuria and by 'classic' or 'non-classic' phenotype. Overall, 193 male patients with low (n = 135) or high (n = 58) baseline proteinuria were evaluated. Compared with patients with low baseline proteinuria, those with high baseline proteinuria had a lower mean +/- standard deviation baseline eGFR (89.1 +/- 26.2 vs. 106.6 +/- 21.8 mL/min/1.73 m(2)) and faster mean +/- standard error eGFR decline (-3.62 +/- 0.42 vs. -1.61 +/- 0.28 mL/min/1.73 m(2) per year; p < 0.0001). Patients with classic Fabry disease had similar rates of eGFR decline irrespective of baseline proteinuria; only one patient with non-classic Fabry disease had high baseline proteinuria, preventing meaningful comparisons between groups. In this analysis, baseline proteinuria significantly impacted the rate of eGFR decline in the overall population, suggesting that early treatment with good proteinuria control may be associated with renoprotective effects

Benefit-Cost Analysis of FEMA Hazard Mitigation Grants

Mitigation ameliorates the impact of natural hazards on communities by reducing loss of life and injury, property and environmental damage, and social and economic disruption. The potential to reduce these losses brings many benefits, but every mitigation activity has a cost that must be considered in our world of limited resources. In principle benefit-cost analysis (BCA) can be used to assess a mitigation activity’s expected net benefits (discounted future benefits less discounted costs), but in practice this often proves difficult. This paper reports on a study that refined BCA methodologies and applied them to a national statistical sample of FEMA mitigation activities over a ten-year period for earthquake, flood, and wind hazards. The results indicate that the overall benefit-cost ratio for FEMA mitigation grants is about 4 to 1, though the ratio varies according to hazard and mitigation type.

Uncertainty of Forest Biomass Estimates in North Temperate Forests Due to Allometry: Implications for Remote Sensing

Estimates of above ground biomass density in forests are crucial for refining global climate models and understanding climate change. Although data from field studies can be aggregated to estimate carbon stocks on global scales, the sparsity of such field data, temporal heterogeneity and methodological variations introduce large errors. Remote sensing measurements from spaceborne sensors are a realistic alternative for global carbon accounting; however, the uncertainty of such measurements is not well known and remains an active area of research. This article describes an effort to collect field data at the Harvard and Howland Forest sites, set in the temperate forests of the Northeastern United States in an attempt to establish ground truth forest biomass for calibration of remote sensing measurements. We present an assessment of the quality of ground truth biomass estimates derived from three different sets of diameter-based allometric equations over the Harvard and Howland Forests to establish the contribution of errors in ground truth data to the error in biomass estimates from remote sensing measurements

Pre-treatment tumour perfusion parameters and initial RECIST response do not predict long-term survival outcomes for patients with head and neck squamous cell carcinoma treated with induction chemotherapy

<p>Tumour plasma perfusion (F_p) in relation to overall survival (a), disease specific survival (b) and locoregional control (c). Nodal plasma perfusion in relation to survival (d) disease specific survival (e) and locoregional control (f).</p