Academia.edu no longer supports Internet Explorer.
To browse Academia.edu and the wider internet faster and more securely, please take a few seconds to upgrade your browser.
The Author(s) 2020 N. AhujPalgrave Handbook of Twentieth and Twenty-First Century Literature and Science, 2021
This chapter proposes a new model for literary scholars to contribute to large-scale, multiyear collaborative research on public policy that brings together science and the humanities. Clayton and Sisco King discuss the impact of literature, film, and television on public concerns about the privacy of their medical data. Rebecca Skloot’s bestseller, The Immortal Life of Henrietta Lacks, and Oprah Winfrey’s adaptation of the book, serve as a case study that combines analyses of literary texts with qualitative and quantitative research. These works demonstrate that the violation of a patient’s privacy can have devastating and far-reaching effects beyond the individual. It can affect relatives for generations; touch neighbors and friends; and influence attitudes of a still-wider community—in this case, African Americans in Baltimore and beyond.
2019
H.R. 1966 and its identical bill S.946, titled the Henrietta Lacks Enhancing Cancer Research Act of 2019, direct the Comptroller General of the U.S. Government Accountability Office (GAO) to conduct a study that seeks to address barriers to participation in cancer clinical trials by historically underrepresented populations. These underrepresented populations include racial and ethnic minorities, older individuals, persons living in rural areas, and those with lower economic incomes. The bills are named after Henrietta Lacks, an African American woman diagnosed with cervical cancer who passed away in 1951. During her treatment doctors took samples from her tumor and this cell line has shown to be remarkably resilient. Described as an immortal cell line, Ms. Lacks’ cells, known as the HeLa cell line, have been grown, commercialized, and distributed to researchers worldwide resulting in numerous medical advances providing developments in treatments for cancer, HIV/AIDS, hemophilia, leukemia, and Parkinson’s disease as well as informing research on chromosomal conditions, gene mapping and precision medicine (H.R 1966/S.946, 2019). The advances made in medical science that were made possible from Ms. Lacks cell line were conducted without her or family’s consent and the revenues generated by these advances were unknown to and not shared with her family. This speaks to fundamental ethical principles of respect for persons, beneficence, and justice and how these principles benefit patients and bolster trust between the scientific community and the general public.
Opposed to the being of Henrietta: bioslavery, pop culture and the third life of HeLa cells, 2016
In conversation with medical ethics and bioethics, this article argues that the commercial sale of HeLa-themed art perpetuates what's called bioslavery of HeLa cells, a circumstance created by legal and medical discourses tracing back to US racial slavery. Racial slavery normalized economic, social and legal inequities that the nation continues to struggle with and laid a foundation for the dynamics that currently exist between Henrietta Lacks' genealogical family, the HeLa cell line, and the medical-pharmaceutical establishment. I turn to fashion ethics discourse and trademark law as potential sites for reparations.
This essay reads the narratives of HeLa cell contamination as accusations of racial and gender passing. It argues that the passing narrative is much more complex, rarely confined to an individual's autonomous will, and far more entrenched in state building and concepts of social progress than previously considered. I urge us to move away from the desire of the passing subject, and back to our own to ask after the sort of anxiety, excitement, and panic that animate our attempts to see, classify, and regulate bodies. Thus, what becomes significant is an examination of an " ethics of knowing " within science. The paper draws on a collection of correspondence, lab notes, published articles, and newspaper clippings related to Henrietta Lacks and HeLa from the George O.
Forensic Anthropology, 2020
African Americans comprise approximately 13% of the U.S. population, 26% of missing persons, and 51% of homicide victims (Kochanek et al. 2019; National Crime Information Center [NCIC] 2018; U.S. Census Bureau 2010). However, African American remains are underrepresented in the documented skeletal samples resulting from body donations to U.S. taphonomic research facilities. If forensic anthropologists are to rise to the challenge of identifying remains from this segment of the U.S. population, and if heritable differences among human populations are to be distinguished from the embodied differences acquired by marginalized individuals, a deeper understanding of African American skeletal biology is essential. This understanding is contingent on Black donors participating in whole-body donation to anthropological research facilities—participation that may be undermined by a legacy of mistrust between Black communities and the traditionally White-dominated scientific and medical establishments. This review paper synthesizes data from medical research on cadaver and organ donation, as well as anthropological literature on structural violence, embodiment, and the collection and curation of human remains, to present multiple perspectives on increasing African American body donation to anthropological research. We focus on historical, structural, and cultural factors potentially contributing to Black donor reluctance, providing a perspective often lacking in discussions of skeletal curation. We aim to generate debate and discussion within the field of forensic anthropology and among community stakeholders about how skeletal research can better serve Black communities.
Bioarchaeology International, 2019
Clyde Snow’s osteobiographic approach, with its focus on the individual and acknowledgment of speculation’s part in analyses, provides a starting point (a counterpoint, more appropriately) for developing a subdisciplinary bioethos. The concept refers to consolidation of a habit that gives rise to moral, normative practices related to exhumation, documentation, analysis, and posthumous treatment of dead bodies. To this end, conversations in bioethics—about consent, anonymity, vulnerable populations, legislation of policy, and so forth—are germane but require expansion to be useful for the particulars of studying dead bodies. I cite the contemporary case of HeLa/Henrietta Lacks as instructive for building models of greater applicability to the remains of ancient (or historic) decedents. As an example of the latter, I discuss Kennewick Man/Ancient One. More than a cautionary or idiosyncratic tale, events surrounding the Kennewick case involved normative, disciplinary practices in need of deliberation. I focus on naming, facial reconstruction, and genetic testing. These techniques are useful for personalizing individuals, thereby making academic analyses more interesting to nonspecialists. Yet they also raise epistemological and ethical concerns related to stakeholders’ ontological security (or its disruption) and dissemination of narratives in mediascapes, among other issues. By way of conclusion, I suggest that osteobiographers begin research by posing certain key queries about the historic antecedents for their work, the current political context in which it takes place, and its possible repercussions. Para desarrollar un “bioethos” subdisciplinario, comienzo con el enfoque osteobiográfico de Clyde Snow, con su foco en el individuo y su reconocimiento de la especulación en la investigación. El concepto “bioethos” se refiere a la consolidación de un hábito que da lugar a prácticas morales y normativas relacionadas con la exhumación, documentación, análisis y tratamiento póstumo de cuerpos muertos. Para tal fin, las conversaciones en bioética (sobre el consentimiento, el anonimato, las poblaciones vulnerables, la legislación de políticas, etcétera) son pertinentes, pero requieren expansión para aquellos que estudian cuerpos muertos. Discuto el caso contemporáneo de HeLa / Henrietta Lacks. Esto caso ayuda a construir modelos que son aplicables a los restos antiguos (o históricos). Como ejemplo del último, discuto Hombre de Kennewick / El Antiguo. Más que un cuento de precaución o ejemplo idiosincrásico, los eventos que rodean el caso de Kennewick involucraron prácticas normativas y disciplinarias que requieren deliberación. Me concentro en nombrar, la reconstrucción facial y la prueba genética. Estas técnicas son útiles para personalizar individuos, lo que hace que el análisis académico sea más interesante para los no especialistas. Sin embargo, plantean inquietudes éticas y epistemológicas relacionadas con la seguridad ontológica (o su interrupción) y la difusión de narrativas en “mediascapes,” entre otras cuestiones. Para concluir, yo sugiero que los osteobiógrafos comiencen sus estudios haciendo preguntas clave sobre los antecedentes históricos de su trabajo, su contexto político y sus posibles repercusiones.
Health Education Journal, 2016
Objective: The Immortal Life of Henrietta Lacks by Rebecca Skloot is an award-winning biography engaging its readers on important topics ranging from race, science and ethics to the social determinants of health. However, the multiple pedagogic impacts of this book on the public health classroom setting have yet to be comprehensively explored. Method: A qualitative, pre/post-test study design assessed the perceptions of 17 Master's of Public Health students on topics of health disparities and medical ethics. A total of 14 students were assigned to an intervention (book-based seminar course; Cohort A) and 3 students acted as the non-intervention group (Cohort B) over a study period of 10 weeks. Results: A thematic analysis uncovered more profound changes in the perceptions of the intervention group. All students were aware of health disparities over the course of the 10-week class; however, significant traction was gained on more complex issues linked to the social determinants of health. Specifically, students in the intervention group showed deeper perceptions about health inequalities with a particular focus on racial disparities. Conclusion: Although graduate students in the public health discipline were well aware of health inequalities, a seminar course surrounding a popular book about Henrietta Lacks afforded students a more concrete understanding for why and how race and racism in health disparities exist.
Online Journal of Health Ethics, 2020
Mount Sinai Journal of Medicine: A Journal of Translational and Personalized Medicine, 2008
International Journal of Environmental Research and Public Health
Mount Sinai Journal of Medicine: A Journal of Translational and Personalized Medicine, 2008
Catalyst: Feminism, Theory, Technoscience
Bakke at 40: Remedying Black Health Disparities Through Affirmative Action in Medical Schools, 2019
Fysiska institutionen, Lunds Universitet, 2018
Journal of microbiology & biology education, 2014
American Journal of Public Health, 2012
Journal of Alzheimer's disease : JAD, 2017
Journal of Genetic Counseling, 2014
Mount Sinai Journal of Medicine: A Journal of Translational and Personalized Medicine, 2008
International Journal of Environmental Research and Public Health
The Journal of Education Research and Interdisciplinary Studies, 2019
Mount Sinai Journal of Medicine: A Journal of Translational and Personalized Medicine, 2012
American Journal of Public Health, 2009
Journal of Health Care for the Poor and Underserved, 2006
Journal of Health Politics Policy and Law, 2009