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Open Access Publications from the University of California

Scholarly Works (42 results)

  • Thesis
  • Peer Reviewed
UC San Francisco Electronic Theses and Dissertations (1988)

    Cover page: The technological imperative im medical practice
    • Article
    • Peer Reviewed
    UC San Francisco Previously Published Works (2022)
    Addressing health disparities has become a central remit for conducting health research. In the following paper, we explore the conceptual and methodological challenges posed by the call to recruit medically underserved populations. This exploration of challenges is undertaken from the perspective of social science researchers embedded in a large within a clinical genomics research study. We suggest that these challenges are found in respect to the development of recruiting strategies, analysis of the data in respect to understanding and interpreting the experiences of being medically underserved, and in comparing the experiences of being medically underserved compared to not being underserved. By way of conclusion, it is argued that there is important role for social scientists with large health research studies which, if achieved successfully, can benefit study teams and society as a whole.
      Cover page: The challenge of recruiting diverse populations into health research: an embedded social science perspective
      • Article
      • Peer Reviewed
      UC San Francisco Previously Published Works (2019)
      Scientists have sought to uncover the genetic bases of many diseases and disorders. In response, scholars defined "geneticization" to describe genetic infiltration of understandings of health and illness. In our research, we interviewed 63 individuals in addiction treatment programs to identify what form of geneticization best fits individuals' description of their own addiction. Individuals' narratives of their lives, which include family history and are influenced by cultural and structural factors, affect respondents' reactions to a potential genetic basis of addiction. Most who had a family history of addiction subscribed to a notion that addiction "runs in families," while most who lacked a family history of addiction used this fact to reject the notion of genetic inheritance of addiction. We conclude that though we see elements of several different versions of geneticization, Nikolas Rose's version, that genetics affects peoples' perceptions of addiction in small but important ways, best describes our respondents' views.
        Cover page: “Why did I get that part of you?” Understanding addiction genetics through family history
        • Thesis
        • Peer Reviewed
        UC San Francisco Electronic Theses and Dissertations (2017)

        ABSTRACT

        Disparities Between Patients' End-of-Life Care Preferences and

        Actual End-of-Life Care Received

        Background: Data suggest that patients’ end-of-life (EOL) care preferences are not consistently followed. Based on these data, in 2015, the IOM called for research to identify the prevalence of the problem of EOL care preferences not honored. The current study used an ethical framework to study this problem.

        Objective: The purpose was to identify the prevalence of patient’s not having their EOL care preferences followed using data from an existing nationally representative study.

        Methods: A secondary analysis of data from seven biennial waves (2002-2014) of the Health and Retirement Study (HRS) was performed. A cross-sectional analysis was accomplished using primarily the HRS exit interview. All respondents indicating that a written EOL preference had been documented were included. Deceased patients’ proxies provided the information about the patient’s preferred EOL care and the actual care received. Because proxies could select more than one EOL care option, both a sample and a subsample of proxies who only selected one option were evaluated. Associations between mismatched EOL preferred vs. EOL received care options and respondent characteristics were also evaluated.

        Results: 3,754 respondents died during the study period, of who 3,660 met the inclusion criteria of having written EOL care instructions. The subsample included 212 respondents. Analysis of the sample found that the most preferred type of EOL care was comfort care, followed by limit care. The frequencies of both samples revealed that in the four EOL care types for which HRS collects data (all care possible, limit care, withhold treatment, comfort care), patient preferences were not followed 53-72% of the time.

        A question about providers verbally offering EOL care treatments to the patient’s proxy were asked and nearly 17% of the time those instructions were not followed.

        Discussion: Using data from a nationally representative study, this study confirms that regardless of the type of EOL care patients’ prefer, and the presence of written instructions, patients do not receive that care greater than 50% of the time, and a significant number are receiving unwanted EOL care. Further data are needed to ascertain why patients’ autonomous preferences are not followed at the EOL.

          Cover page: Disparities Between Patients' End-of-Life Care Preferences and Actual End-of-Life Care Received
          • Article
          • Peer Reviewed
          UC San Francisco Previously Published Works (2021)
          Population-based genomic screening is at the forefront of a new approach to disease prevention. Yet the lack of diversity in genome wide association studies and ongoing debates about the appropriate use of racial and ethnic categories in genomics raise key questions about the translation of genomic knowledge into clinical practice. This article reports on an ethnographic study of a large pragmatic clinical trial of breast cancer screening called WISDOM (Women Informed to Screen Depending On Measures of Risk). Our ethnography illuminates the challenges of using race or ethnicity as a risk factor in the implementation of precision breast cancer risk assessment. Our analysis provides critical insights into how categories of race, ethnicity and ancestry are being deployed in the production of genomic knowledge and medical practice, and key challenges in the development and implementation of novel Polygenic Risk Scores in the research and clinical applications of this emerging science. Specifically, we show how the conflation of social and biological categories of difference can influence risk prediction for individuals who exist at the boundaries of these categories, affecting the perceptions and practices of scientists, clinicians, and research participants themselves. Our research highlights the potential harms of practicing genomic medicine using under-theorized and ambiguous categories of race, ethnicity, and ancestry, particularly in an adaptive, pragmatic trial where research findings are applied in the clinic as they emerge. We contribute to the expanding literature on categories of difference in post-genomic science by closely examining the implementation of a large breast cancer screening study that aims to personalize breast cancer risk using both common and rare genomic markers.
            Cover page: The limits of personalization in precision medicine: Polygenic risk scores and racial categorization in a precision breast cancer screening trial
            • Article
            • Peer Reviewed
            UC San Francisco Previously Published Works (2017)
            In many countries around the world, biobanks have become crucial resources for the conduct of biomedical research, facilitating many kinds of research, including international collaborations. The focus of this special issue is on a looming ethical issue that has become a focus of debate-the return of research results and incidental findings to biobank participants. Although the articles in this issue do not provide a final answer to the ethical, legal, and social dilemmas that arise in the context of the return of results, the intent of the collection is to approach this issue from multiple perspectives and within an international context spanning the United Kingdom, continental Europe including Eastern Europe, the United States, and the Middle East.
              Cover page: Returning Results in Biobank Research: Global Trends and Solutions
              • Article
              • Peer Reviewed
              UC San Francisco Previously Published Works (2017)
              Physician-assisted death is now legal in California, and similar laws are being considered in many other states. The California law includes safeguards, yet health care providers will face practical and ethical issues while implementing physician-assisted death that are not addressed by the law. To help providers and health care facilities in California prepare to provide optimal care to patients who inquire about physician-assisted death, we brought together experts from California, Oregon, and Washington. We convened a conference of 112 stakeholders in December 2015, and herein present their recommendations. Themes of recommendations regarding implementation include (1) institutions should develop and revise physician-assisted death policies; (2) legal physician-assisted death will have implications for California's culturally and socioeconomically diverse population, and for patients from vulnerable groups; (3) conscientious objection and moral distress for health care providers must be considered; and (4) palliative care is essential to the response to the law. The expert conference participants' insights are a valuable guide, both for providers and health care facilities in California planning or revising their response, and for other jurisdictions where physician-assisted death laws are being considered or implemented.
                Cover page: How California Prepared for Implementation of Physician-Assisted Death: A Primer.
                • Article
                • Peer Reviewed
                UC San Francisco Previously Published Works (2017)
                The gene has infiltrated the way citizens perceive themselves and their health. However, there is scant research that explores the ways genetic conceptions infiltrate individuals' understanding of their own health as it relates to a behavioral trait, like addiction. Do people seeking treatment for addiction ground their self-perception in biology in a way that shapes their experiences? We interviewed 63 participants in addiction treatment programs, asking how they make meaning of a genetic understanding of addiction in the context of their recovery, and in dealing with the stigma of addiction. About two-thirds of people in our sample did not find a genetic conception of addiction personally useful to them in treatment, instead believing that the cause was irrelevant to their daily struggle to remain abstinent. One-third of respondents believed that an individualized confirmation of a genetic predisposition to addiction would facilitate their dealing with feelings of shame and accept treatment. The vast majority of our sample believed that a genetic understanding of addiction would reduce the stigma associated with addiction, which demonstrates the perceived power of genetic explanations in U.S. society. Our results indicate that respondents (unevenly) ground their self-perception of themselves as an addicted individual in biology.
                  Cover page: “I don’t have to know why it snows, I just have to shovel it!”: Addiction recovery, genetic frameworks, and biological citizenship
                  • Article
                  • Peer Reviewed
                  UC San Francisco Previously Published Works (2016)

                  Background and objective

                  The potential application of whole-genome sequencing (WGS) to state-mandated standard newborn screening (NBS) challenges the traditional public health approach to NBS and raises ethical, policy, and clinical practice issues. This article examines the perspectives and values of diverse healthy pregnant women and parents of children diagnosed with a primary immunodeficiency disorder about traditional NBS and expanded NBS with the use of WGS.

                  Methods

                  We conducted 4 focus groups (3 in English and 1 in Spanish) with socioeconomically and ethnically diverse pregnant women (n = 26), and a comparison group with parents of children diagnosed with a primary immunodeficiency disorder (n = 5).

                  Results

                  Pediatric policy-relevant themes that emerged from our analysis of the focus group data are presented within 4 categories: (1) perspectives on traditional NBS, (2) informed consent, (3) return of results, and (4) storage and retrieval of results. Analyses indicate that study participants desired greater inclusion in the NBS process. Despite an optimistic orientation to the potential benefits and limited harms likely to result from genomic applications of NBS, parents voiced concerns about privacy and control over test results. Limited trust in the medical system and the state-run NBS program informed these concerns.

                  Conclusions

                  Expanded NBS with WGS for pediatricians may require management of more genetic conditions, including mutations that convey risk to both the child and parents for adult-onset disorders, and an informed-consent process to manage the genomic data and storage of blood spots. Attention to how these technologies are understood in diverse populations is needed for effective implementation.
                    Cover page: Parental Views on Expanded Newborn Screening Using Whole-Genome Sequencing
                    • Article
                    • Peer Reviewed
                    UC San Francisco Previously Published Works (2019)

                    Study design

                    Prospective cross-sectional survey.

                    Objective

                    To determine the perspectives of parents of patients undergoing posterior instrumented fusion for adolescent idiopathic scoliosis (AIS) regarding simultaneous surgery and trainee participation.

                    Summary of background data

                    Simultaneous ("at the same time") surgery is under scrutiny by the public, government, payers, and the medical community. The objective of this study is to determine the perspectives of parents of patients undergoing posterior instrumented fusion for adolescent idiopathic scoliosis. Our goal is to inform the national conversation on this subject with real patient and family voices.

                    Methods

                    A survey was prospectively administered to 31 consecutive parents of patients undergoing posterior instrumented fusion for adolescent idiopathic scoliosis at a large academic medical center. "Overlapping" was defined as simultaneity during "noncritical" parts of an operation. "Concurrent" was defined as simultaneity that includes "critical" part(s) of an operation. Participants were asked to provide levels of agreement with overlapping and concurrent surgery and anesthesia, as well as with trainee involvement.

                    Results

                    On average, respondents "strongly agree" with the need to be informed about overlapping or concurrent surgery. They "disagree" with both overlapping and concurrent scheduling, and "disagree" with trainees operating without direct supervision, even for "noncritical" parts. Informing parents about the presence of a back-up surgeon or research demonstrating safety of simultaneous surgery did not make them agreeable to simultaneous scheduling.

                    Conclusion

                    Parents have a strong desire to be informed of simultaneous spinal surgery and anesthesia as part of consent on behalf of their children. Their disagreement with simultaneous surgery, as well as with trainees operating without direct supervision, suggests discordance with current guidelines and practice and should inform the national conversation moving forward.

                    Level of evidence

                    N/A.
                      Cover page: Concurrent and Overlapping Surgery
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