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出版者:Georgetown Univ Pr

作者:Prograis, Lawrence J., Jr., M.d. (EDT)/ Pellegrino, Edmund D. (EDT)

出品人:

页数:169

译者:

出版时间:

价格:208.00 元

装帧:Pap

isbn号码:9781589011649

丛书系列:

图书标签:

• Bioethics
• African American
• Healthcare Disparities
• Medical Ethics
• Race
• Social Justice
• Health Equity
• Cultural Competence
• Ethics
• Diversity

African American Bioethics: A Comprehensive Exploration This volume delves into the rich, complex, and often overlooked landscape of bioethics as it intersects with the lived experiences, historical context, and cultural nuances of African Americans. Far from being a mere application of established ethical principles, this text argues for a distinct, critically informed framework rooted in the history of medical racism, the persistent realities of health disparities, and the unique moral considerations arising from Black communities’ engagement with the biomedical enterprise. The book is structured around three core theoretical pillars: Historical Reckoning, Lived Experience, and Future Directions. Part I: Historical Reckoning – The Shadow of the Past on Contemporary Ethics This section establishes the foundational necessity of historical context when discussing African American bioethics. It moves beyond simple acknowledgment of past abuses to analyze how these events continue to shape present-day patient-provider relationships, research participation, and policy adherence. Chapter 1: From Enslavement to Experimentation: Mapping the Trauma Narrative. This chapter provides a forensic examination of pivotal moments—such as the Tuskegee Syphilis Study, J. Marion Sims’ gynecological experiments, and the non-consensual use of Henrietta Lacks’ cells—not as isolated incidents, but as constitutive elements of medical distrust. It analyzes the shift from outright physical coercion under slavery to the more subtle, systemic forms of exploitation present in contemporary clinical trials and observational studies. Key focus is placed on the concept of “therapeutic misconception” as it applies specifically to marginalized populations who may view participation as their only access to quality care. Chapter 2: Race, Biology, and the Fetishization of Genetic Difference. A critical deconstruction of biological essentialism is central here. The chapter scrutinizes the historical and ongoing misuse of race as a proxy for biological risk in genetic research and clinical prediction models. It explores how diagnostic categories (e.g., sickle cell anemia, hypertension) have been racialized, leading to differential standards of care and potentially harmful assumptions about innate biological inferiority or superiority. The discussion addresses the ethical perils of pharmacogenomics when data sets lack sufficient Black representation, leading to ineffective or dangerous drug dosing protocols. Chapter 3: Institutional Betrayal and the Erosion of Trust. This chapter defines and applies the concept of Institutional Betrayal, analyzing how governmental, academic, and healthcare institutions have systematically violated the trust of Black communities. It examines the resulting phenomena, including heightened rates of appointment no-shows, refusal to consent to autopsies or tissue donation, and the pervasive “defensive medicine” enacted by Black patients who fear misdiagnosis or undertreatment due to implicit bias. The analysis draws heavily on sociology and critical race theory to situate these behaviors within a structural framework rather than framing them as individual failings. Part II: Lived Experience – Navigating the Ethics of Care in Disparity Part II shifts focus from institutional history to the immediate, everyday ethical dilemmas faced by Black patients, families, and clinicians. It centers on how social determinants of health translate into ethical quandaries regarding autonomy, justice, and beneficence. Chapter 4: Health Disparities as Ethical Failures: The Justice Imperative. This chapter argues forcefully that persistent health disparities (in maternal mortality, cardiovascular disease outcomes, etc.) are not merely public health challenges but profound failures of distributive and social justice within bioethics. It scrutinizes the allocation of scarce resources—from organ transplants to access to cutting-edge cancer therapies—through the lens of structural inequality. The discussion contrasts traditional Rawlsian justice models with frameworks emphasizing equity based on historical disadvantage, advocating for “reparative justice” in healthcare delivery. Chapter 5: Autonomy, Assent, and the Family Nexus in End-of-Life Care. In examining end-of-life decision-making, the text explores the tension between the Western bioethical emphasis on individual autonomy and the often more communitarian, family-centered approaches prevalent in many African American cultures. It details how implicit bias in palliative care discussions can lead clinicians to prematurely assume a lack of capacity or to bypass the designated surrogate decision-maker. The chapter explores culturally sensitive methods for obtaining informed consent and assent, particularly when dealing with complex life-sustaining treatments for elderly or critically ill family members. Chapter 6: Reproductive Justice: Beyond Choice to Access and Well-being. Moving beyond the standard political framing of abortion rights, this chapter adopts the Reproductive Justice framework developed by Black women activists. It examines the full spectrum of reproductive health ethics, including forced sterilization in the 20th century, current struggles for accessible, high-quality prenatal and postpartum care (highlighting the Black maternal mortality crisis), and barriers to contraception and fertility treatments. The ethical mandate here is not just the right not to have a child, but the right to have a child and be supported in raising that child in a healthy environment. Chapter 7: The Black Clinician’s Moral Burden: Advocacy vs. Professionalism. This deeply personal chapter addresses the ethical tightrope walked by African American physicians, nurses, and researchers. It explores the conflict between the duty to advocate fiercely for patients facing systemic bias and the pressure to conform to institutional norms that may discourage disruptive advocacy. Topics include managing implicit bias in one's own practice, navigating microaggressions in professional settings, and the unique ethical obligations felt toward mentoring the next generation of diverse healthcare professionals. Part III: Future Directions – Building an Ethically Accountable System The concluding section outlines concrete steps and conceptual shifts required to move African American bioethics from critique to constructive change, emphasizing the need for community partnership and reformed governance. Chapter 8: Redefining Community Engagement: From Consultation to Co-Creation in Research. This chapter critiques traditional models of community advisory boards (CABs) as often tokenistic and superficial. It proposes models of authentic partnership where community members move from being subjects of study to genuine intellectual partners in protocol design, data interpretation, and dissemination. It details the ethical obligation to ensure that research findings directly benefit the communities from which the data was derived, rather than solely enriching external institutions. Chapter 9: Algorithmic Bias and the Digital Divide: New Frontiers in Health Equity. As healthcare increasingly relies on Artificial Intelligence (AI) and machine learning, this chapter explores emerging bioethical challenges specific to Black populations. It analyzes how biased training data leads to diagnostic algorithms that systematically underperform for darker skin tones or misclassify risk profiles for socioeconomically disadvantaged groups. The chapter calls for rigorous ethical audits of all health-related algorithms based on fairness metrics that prioritize equity over mere predictive accuracy across aggregated groups. Chapter 10: Towards an African American Bioethics Framework: Principles for an Ethical Future. The concluding chapter synthesizes the historical and experiential arguments into a set of actionable ethical principles. These principles emphasize Dignity in Context, Historical Accountability, Structural Competence, and Remedial Justice. It argues that ethical oversight bodies (IRBs, ethics committees) must adopt these frameworks to proactively dismantle systemic barriers, ensuring that medical advancement serves all populations equitably, finally moving beyond the reactive stance necessitated by centuries of medical harm. This volume serves as an essential text for bioethicists, medical students, public health practitioners, policymakers, and anyone committed to achieving genuine health equity in the 21st century. It demands a fundamental re-centering of the Black experience as central, not peripheral, to the discipline of bioethics.

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