Matching Items (8)
Description
ABSTRACT Whole genome sequencing (WGS) and whole exome sequencing (WES) are two comprehensive genomic tests which use next-generation sequencing technology to sequence most of the 3.2 billion base pairs in a human genome (WGS) or many of the estimated 22,000 protein-coding genes in the genome (WES). The promises offered from WGS/WES are: to identify suspected yet unidentified genetic diseases, to characterize the genomic mutations in a tumor to identify targeted therapeutic agents and, to predict future diseases with the hope of promoting disease prevention strategies and/or offering early treatment. Promises notwithstanding, sequencing a human genome presents several interrelated challenges: how to adequately analyze, interpret, store, reanalyze and apply an unprecedented amount of genomic data (with uncertain clinical utility) to patient care? In addition, genomic data has the potential to become integral for improving the medical care of an individual and their family, years after a genome is sequenced. Current informed consent protocols do not adequately address the unique challenges and complexities inherent to the process of WGS/WES. This dissertation constructs a novel informed consent process for individuals considering WGS/WES, capable of fulfilling both legal and ethical requirements of medical consent while addressing the intricacies of WGS/WES, ultimately resulting in a more effective consenting experience. To better understand components of an effective consenting experience, the first part of this dissertation traces the historical origin of the informed consent process to identify the motivations, rationales and institutional commitments that sustain our current consenting protocols for genetic testing. After understanding the underlying commitments that shape our current informed consent protocols, I discuss the effectiveness of the informed consent process from an ethical and legal standpoint. I illustrate how WGS/WES introduces new complexities to the informed consent process and assess whether informed consent protocols proposed for WGS/WES address these complexities. The last section of this dissertation describes a novel informed consent process for WGS/WES, constructed from the original ethical intent of informed consent, analysis of existing informed consent protocols, and my own observations as a genetic counselor for what constitutes an effective consenting experience.
ContributorsHunt, Katherine (Author) / Hurlbut, J. Benjamin (Thesis advisor) / Robert, Jason S. (Thesis advisor) / Maienschein, Jane (Committee member) / Northfelt, Donald W. (Committee member) / Marchant, Gary (Committee member) / Ellison, Karin (Committee member) / Arizona State University (Publisher)
Created2013
Description
Medical practice surrounding tuberculosis (TB) treatment in two nineteenth-century Scottish charitable hospitals reveals that in developing empirically-positioned constructs of this and related diseases, medical practitioners drew upon social assumptions about women and the working classes, thus reinforcing rather than shedding cultural notions of who becomes ill and why. TB is a social disease, its distribution determined by relationships among human groups; primary among these is the patient-practitioner relationship, owing to the social role of medical treatment in restoring the ill to both health and society. To clarify the influence of cultural context upon the evolution of medical constructs of TB, I examined Glasgow Royal Infirmary (GRI) and Royal Infirmary of Edinburgh (RIE) ward journals, admissions registers, and institution management records from 1794 through 1905. Medical practice at the turn of the nineteenth century was dominated by observation and questioning of the patient, concordant with conceptions of physicians' labor as mental rather than physical. This changed with the introduction of the stethoscope in the 1820s, which together with the dissection of the poor allowed by the 1832 Anatomy Act ushered in disease concepts emphasizing pathological anatomy. Relationships between patient and practitioner also altered at this time, exhibiting distrust and medical dominance. The mid-Victorian era was notable for clinicians' increasing interest in immorality's contributions to ill health, absent in earlier practice and linked to conceptions of women and the working classes as inherently pathological. In 1882, discovery of the tubercle bacillus challenged existing nutritional, hereditary, and environmental explanations for TB. Although practitioners utilized bacteriological methods, this discovery did not revolutionize diagnosis or treatment. Rather, these older models were incorporated with perceived behavioral, environmental, and biological degradation of the working classes, rendering marginalized groups "soil" prepared for the "seeds" of disease -- at risk, but also to blame. This framework, in which marginalized groups contribute to their increased risk for disease through refusal to accord with hegemonically-established "healthy" behavior, persists. As a result, meaningful change in TB rates will need to address these longstanding contributions of social inequality to Western medical treatment.
ContributorsFarnbach Pearson, Amy Walker (Author) / Buikstra, Jane E. (Thesis advisor) / Fuchs, Rachel G (Committee member) / Brewis Slade, Alexandra (Committee member) / Roberts, Charlotte A. (Committee member) / Arizona State University (Publisher)
Created2013
Description
As a form of bodily modification, female circumcision has generated unprecedented debates across the medical community, social sciences disciplines, governmental
on-governmental agencies and activists and others. The various terminologies used to refer to it attest to differences in knowledge systems, perceptions, and lived experiences emerging from divergent cultures and ideologies. In the last two decades, these debates have evolved from a local matter to a global health concern and human rights issue, coinciding with the largest influx of African refugees to the Western nations. Various forms of female circumcision are reported in 28 countries in the African Continent; Somalia has one of the highest prevalence of female circumcision and the most severe type. The practice is antithetical to Western values and poses an ideological challenge to the construction of the normal body, its bodily processes and its existential being-in-the-world. From the global health perspectives, female circumcision is deemed to be a health hazard--especially during childbirth--though the scientific evidence is inconclusive from studies conducted in post-migration. Yet, Somali refugee women have higher childbearing disparities in host nations, including the U.S. They are also perceived as difficult patients and resistant to obstetrics interventions. Although their FGC status and "cultural" differences are often cited, there is a lack of adequate explanations as to why and how these factors shape patient-provider interactions and affect outcomes. The objectives of this dissertation study are to quantitatively and qualitatively explore these questions within and between Somali refugee women and their healthcare providers in Arizona. Two theoretical frameworks and methods--culture consensus and embodiment-- are applied to identify variations in childbearing knowledge and to explore how the cultural phenomenon of circumcision is subjectively and intersubjectively embodied in the context of childbearing. Culture consensus questionnaire (N=174) and ethnographic interviews (N=40) using phenomenology approach were conducted. Analyses suggest cross-cultural disagreement hinged on: faith in science versus God, pregnancy/childbirth interventions, language challenges, and control-resistance issues; intra-cultural disagreement underscores that Somalis are not culturally homogenous group. Preconceptions of female circumcision body as a cultural phenomenon has different and conflicting meanings that may adversely impact patient-provider interactions and outcomes.
on-governmental agencies and activists and others. The various terminologies used to refer to it attest to differences in knowledge systems, perceptions, and lived experiences emerging from divergent cultures and ideologies. In the last two decades, these debates have evolved from a local matter to a global health concern and human rights issue, coinciding with the largest influx of African refugees to the Western nations. Various forms of female circumcision are reported in 28 countries in the African Continent; Somalia has one of the highest prevalence of female circumcision and the most severe type. The practice is antithetical to Western values and poses an ideological challenge to the construction of the normal body, its bodily processes and its existential being-in-the-world. From the global health perspectives, female circumcision is deemed to be a health hazard--especially during childbirth--though the scientific evidence is inconclusive from studies conducted in post-migration. Yet, Somali refugee women have higher childbearing disparities in host nations, including the U.S. They are also perceived as difficult patients and resistant to obstetrics interventions. Although their FGC status and "cultural" differences are often cited, there is a lack of adequate explanations as to why and how these factors shape patient-provider interactions and affect outcomes. The objectives of this dissertation study are to quantitatively and qualitatively explore these questions within and between Somali refugee women and their healthcare providers in Arizona. Two theoretical frameworks and methods--culture consensus and embodiment-- are applied to identify variations in childbearing knowledge and to explore how the cultural phenomenon of circumcision is subjectively and intersubjectively embodied in the context of childbearing. Culture consensus questionnaire (N=174) and ethnographic interviews (N=40) using phenomenology approach were conducted. Analyses suggest cross-cultural disagreement hinged on: faith in science versus God, pregnancy/childbirth interventions, language challenges, and control-resistance issues; intra-cultural disagreement underscores that Somalis are not culturally homogenous group. Preconceptions of female circumcision body as a cultural phenomenon has different and conflicting meanings that may adversely impact patient-provider interactions and outcomes.
ContributorsFawcett, Lubayna (Author) / Maupin,, Jonathan N. (Thesis advisor) / Brewis Slade, Alexandra (Committee member) / Johnson-Agbakwu, Crista E. (Committee member) / Arizona State University (Publisher)
Created2014
Description
Most studies on refugee populations tend to focus on mental health issues and communicable diseases. Yet, reproductive health remains a major aspect of refugee women's health needs. African refugee women in the United States continue to experience some difficulties in accessing reproductive health services despite having health insurance coverage. The purpose of this study was to understand the reproductive health journey of African refugee women resettled in Phoenix, Arizona. This study also explored how African refugee women's pre-migration and post-migration experiences affect their relationships with health care providers. The study was qualitative consisting of field observations at the Refugee Women's Health Clinic (RWHC) in Phoenix, verbally administered demographic questionnaires, and semi-structured one-on-one interviews with twenty African refugee women (between the ages of 18 and 55) and ten health care providers. The findings were divided into three major categories: pre-migration and post migration experiences, reproductive health experiences, and perspectives of health care providers. The themes that emerged from these categories include social isolation, living between two cultures, racial and religious discrimination, language/interpretation issues and lack of continuity of care. Postcolonial feminism, intersectionality, and human rights provided the theoretical frameworks that helped me to analyze the data that emerged from the interviews, questionnaire and fieldnotes. The findings revealed some contrasts from the refugee women's accounts and the accounts of health care providers. While refugee women spoke from their own specific social location leading to more nuanced perspectives, health care providers were more uniform in their responses leading to a rethink of the concept of cultural competency. As I argue in the dissertation and contrary to conventional wisdom, culture per se does not necessarily translate to resistance to the American health care system for many African refugee women. Rather, their utilization (or lack thereof) of health services are better conceived within a broader and complex context that recognizes intersectional factors such as gender, racialization, language, displacement, and class which have a huge impact on the reproductive health seeking patterns of refugee women.
ContributorsJatau, Mary (Author) / Koblitz, Ann Hibner (Thesis advisor) / James, Stanlie (Committee member) / Robillard, Alyssa (Committee member) / Johnson, Crista (Committee member) / Arizona State University (Publisher)
Created2011
Description
With new trends in drug development and testing, it must be determined whether the current state of balance of ethos (the moral norm) and regula (the legal framework) can successfully protect patients while keeping the door to scientific innovation open. The rise of the Clinician Investigator (CI) in both academic and private research introduces a challenge to the protection of subjects in the conflicting dual role of physician and scientist. Despite the constant evolution of regulation and ethical standards, questions about the roles' combined effectiveness in relation to this challenge persist. Carl Elliot describes the suicide of a patient-subject enrolled in an industry-funded physician-run anti-psychotic pharmaceutical drug trial in a 2010 Mother Jones article. Elliot provides a personal account of discrepancies seen in the ethical principles of beneficence, respect for subjects and justice. Through analysis of the problems presented in the case as a model for potential dangers in clinical research, the effectiveness of ethics and law in protecting human subjects is examined. While the lag between ethical standard and regulation has historically shown to cause similar issues, the misconception of current regulation and ethical standards may be contributing to the decrease in subject protections. After IRB approval of subject protections in the research protocol, CIs have been shown to downgrade their responsibility to maintaining ethos through the course of the trial. And, despite their experience in patient-centered ethos as a physician, CIs may be inclined to substitute these values for the ethos of a researcher, with the goal to avoid therapeutic misconception. Maintaining personal responsibility for subjects beyond regulatory structure, and promoting the welfare of the subjects in regards to the ethical standard of research investigators, will provide added security for subjects and decrease opportunity for exploitation in future research.
ContributorsWaddell, Amanda (Author) / Robert, Jason S (Thesis advisor) / Ellison, Karin (Committee member) / Fuse Brown, Erin C. (Committee member) / Arizona State University (Publisher)
Created2012
Description
Medical policies, practices, and definitions do not exist solely in the clinical realm; they show up in the lived experiences of patients. This research examines how people with the chronic illness called myalgic encephalomyelitis (ME) define their own illness experiences. They have situated knowledge about their illness onset, search for care, and clinical encounters. Their knowledge complicates and challenges the existing norms in clinical practice and medical discourse, as the experience of searching for care with ME reveals weaknesses in a system that is focused on acute care. Patient narratives reveal institutional patterns that obstruct access to medical care, such as disbelief from clinicians and lack of training in chronic illness protocols. They also reveal patterns in physician behavior that indicate the likelihood of receiving effective care. These patient narratives serve as a basis for continued examination of ME as well as further reconstruction of medical practice and procedure.
ContributorsCutler, Carmen (Author) / Oliverio, Annamaria (Thesis advisor) / Mann, Annika (Thesis advisor) / Behl, Natasha (Committee member) / Arizona State University (Publisher)
Created2019
Description
Patient-clinician interactions are central to technical and interpersonal processes of medical care. Video recordings of these interactions provide a rich source of data and a stable record that allows for repeated viewing and analysis. Collecting video recordings requires navigating ethical and feasibility constraints; further, realizing the potential of video requires specialized research skills. Interdisciplinary collaborations involving practitioners, medical educators, and social scientists are needed to provide the clinical perspectives, methodological expertise, and capacity needed to make collecting video worthwhile. Such collaboration ensures that research questions will be based on scholarship from the social sciences, resonate with practice, and produce results that fit educational needs. However, the literature lacks suggested practices for building and sustaining interdisciplinary research collaborations involving video data. In this paper, we provide concrete advice based on our experience collecting and analyzing a single set of video-recorded clinical encounters and non-video data, which have so far yielded nine distinct studies. We present the research process, timeline, and advice based on our experience with interdisciplinary collaboration. We found that integrating disciplines and traditions required patience, compromise, and mutual respect; learning from each other enhanced our enjoyment of the process, our productivity, and the clinical relevance of our research.
ContributorsTorres, Peter Joseph (Author) / Henry,Stephen G., MD (Author) / White, Anne Elizabeth Clark (Author) / Magnan, Elizabeth M. (Author) / Hood-Medland,Eve Angeline (Author) / Gosdin,Melissa (Author) / Kravitz,Richard L. (Author) / Gerwing, Jennifer (Author)
Created2021-10-01
Description
In the 1973 case of Roe v. Wade, the US Supreme Court ruled that laws banning abortion violated the US Constitution. The Texas abortion laws, articles 1191–1194, and 1196 of the Texas penal code, made abortion illegal and criminalized those who performed or facilitated the procedure. Prior to Roe v. Wade, most states heavily regulated or banned abortions. The US Supreme Court decision in Roe v. Wade secured women's rights to terminate pregnancies for any reasons within the first trimester of pregnancy. It also sparked legal discussions of abortion, fetus viability and personhood, and the trimester framework, setting a landmark precedent for future cases including Webster v. Reproductive Health Services (1989), Planned Parenthood v. Casey (1992), and Stenberg v. Carhart (2000).
ContributorsSeward, Sharaden (Author) / Nunez-Eddy, Claudia (Author) / Gleason, Kevin M. (Editor) / Arizona State University. School of Life Sciences. Center for Biology and Society. Embryo Project Encyclopedia. (Publisher) / Arizona Board of Regents (Publisher)
Created2018-07-03