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https://www.readbyqxmd.com/read/29652094/from-in-vivo-to-in-vitro-how-the-guatemala-std-experiments-transformed-bodies-into-biospecimens
#1
Kayte Spector-Bagdady, Paul A Lombardo
Policy Points: While most scholarship regarding the US Public Health Service's STD experiments in Guatemala during the 1940s has focused on the intentional exposure experiments, secondary research was also conducted on biospecimens collected from these subjects. These biospecimen experiments continued after the Guatemala grant ended, and the specimens were used in conjunction with those from the Tuskegee syphilis experiments for ongoing research. We argue there should be a public accounting of whether there are still biospecimens from the Guatemala and Tuskegee experiments held in US government biorepositories today...
April 13, 2018: Milbank Quarterly
https://www.readbyqxmd.com/read/29311536/historical-origins-of-the-tuskegee-experiment-the-dilemma-of-public-health-in-the-united-states
#2
Jinbin Park
The Tuskegee Study of Untreated Syphilis in the Negro Male was an observational study on African-American males in Tuskegee, Alabama between 1932 and 1972. The U. S. Public Health Service ran this study on more than 300 people without notifying the participants about their disease nor treating them even after the introduction of penicillin. The study included recording the progress of disease and performing an autopsy on the deaths. This paper explores historical backgrounds enabled this infamous study, and discusses three driving forces behind the Tuskegee Study...
December 2017: Ŭi Sahak
https://www.readbyqxmd.com/read/29064071/tuskegee-as-sacred-rhetoric-focal-point-for-the-emergent-field-of-african-american-religion-and-health
#3
Terri Laws
Scholars in African American religion engage the Tuskegee Syphilis Study as the focal point of the African American experience in institutional medicine. Seeking a way forward from this history and its intentional evil, the author proposes to position Tuskegee as a form of Lynch's culturally contextual sacred rhetoric to make use of its metaphoric value in the emerging field of African American religion and health. In this broader meaning-making frame, Tuskegee serves as a reminder that African American religious sensibility has long been an agential resource that counters abuse of the Black body...
February 2018: Journal of Religion and Health
https://www.readbyqxmd.com/read/28004553/-untreated-syphilis-from-oslo-to-tuskegee
#4
Anniken Sandvik, Anne Kveim Lie
In the period from 1891 - 1910, around 2000 patients with syphilis were admitted to the Department of Dermatology, Oslo University Hospital, Rikshospitalet. The head of the department, Cæsar Boeck (1845 - 1917), believed in allowing the disease to take its natural course and withheld treatment. He made detailed notes of the diagnosis and the clinical course of the disease for all his patients. Boeck's material is unique, and forms the basis for our current knowledge about the prognosis and course of syphilis infections...
December 2016: Tidsskrift for Den Norske Lægeforening: Tidsskrift for Praktisk Medicin, Ny Række
https://www.readbyqxmd.com/read/27541548/informed-consent-in-the-changing-landscape-of-research
#5
Marilyn J Hammer
The history of informed consent dates back as early as the 16th century (Selek, 2010). The current tenets of informed consent pertaining to the ethical conduct of research on human participants predominately stems from the 1947 Nuremberg Code (National Institutes of Health, 2016), which was created following the Nuremberg trials at the end of World War II. The unethical conduct of research on human participants during the Holocaust, coupled with experiments (e.g., the Tuskegee syphilis study), prompted a more formalized structure for ensuring the well-being and autonomy of human participants in research studies...
September 1, 2016: Oncology Nursing Forum
https://www.readbyqxmd.com/read/27499485/henry-knowles-beecher-jay-katz-and-the-transformation-of-research-with-human-beings
#6
Alexander Morgan Capron
The modern history of experimentation with human beings is notable for its ethical lacunae, when even the clearest directives fail to prevent violations of subjects' rights and welfare. One such lacuna occurred during the 25 years between 1947, when the Nuremberg Code was articulated in the judgment passed on the men who had performed medical experiments in the Nazi concentration camps, and 1972, when the revelation of the 40-year-long Tuskegee Syphilis Study shocked the public and pushed Congress to adopt legislation that eventually transformed the governance of human subjects research...
2016: Perspectives in Biology and Medicine
https://www.readbyqxmd.com/read/27089070/judging-the-past-how-history-should-inform-bioethics
#7
Barron H Lerner, Arthur L Caplan
Bioethics has become a common course of study in medical schools, other health professional schools, and graduate and undergraduate programs. An analysis of past ethical scandals, as well as the bioethics apparatus that emerged in response to them, is often central to the discussion of bioethical questions. This historical perspective on bioethics is invaluable and demonstrates how, for example, the infamous Tuskegee syphilis study was inherently racist and how other experiments exploited mentally disabled and other disadvantaged persons...
April 19, 2016: Annals of Internal Medicine
https://www.readbyqxmd.com/read/26536071/reform-of-clinical-research-regulations-finally
#8
Ezekiel J Emanuel
In 1972, Jean Heller of the Associated Press reported on a 40-year-old research study that had followed black Alabama sharecroppers, some of whom had syphilis. The revelation of deception, withholding of appropriate treatment, and other unethical practices exploded into the Tuskegee scandal...
December 10, 2015: New England Journal of Medicine
https://www.readbyqxmd.com/read/26270295/the-rationalization-of-unethical-research-revisionist-accounts-of-the-tuskegee-syphilis-study-and-the-new-zealand-unfortunate-experiment
#9
Charlotte Paul, Barbara Brookes
Two studies, widely condemned in the 1970s and 1980s-the Tuskegee study of men with untreated syphilis and the New Zealand study of women with untreated carcinoma in situ of the cervix-received new defenses in the 21st century. We noted remarkable similarities in both the studies and their defenses. Here we evaluate the scientific, political, and moral claims of the defenders. The scientific claims are largely based on incomplete or misinterpreted evidence and exaggeration of the uncertainties of science. The defenders' political arguments mistakenly claim that identity politics clouded the original critiques; in fact such politics opened the eyes of the public to exploitation...
October 2015: American Journal of Public Health
https://www.readbyqxmd.com/read/25345768/enemy-of-the-people-enemy-of-the-state-two-great-lyiinfamous-doctors-passions-and-the-judgment-of-history
#10
Susan M Reverby
If the aphorism “history will be the judge” is deployed, the active agent of this formulation is the historian. Comparing two great(ly infamous) doctors,John C. Cutler and Alan Berkman, the article considers how historians balance digging for sources, creating meaningful narrative, and acknowledging our own beliefs that embed in the judgments we make. The article explores our responsibility for balance and moral judgment at the same time. Cutler, admonished for his role in the infamous sexually transmitted diseases studies in Tuskegee and Guatemala, also was a well-respected researcher and teacher...
2014: Bulletin of the History of Medicine
https://www.readbyqxmd.com/read/24461955/syphilis-and-human-experimentation-from-world-war-ii-to-the-present-a-historical-perspective-and-reflections-on-ethics
#11
E Cuerda-Galindo, X Sierra-Valenti, E González-López, F López-Muñoz
Even after the Nuremberg code was published, research on syphilis often continued to fall far short of ethical standards. We review post-World War II research on this disease, focusing on the work carried out in Guatemala and Tuskegee. Over a thousand adults were deliberately inoculated with infectious material for syphilis, chancroid, and gonorrhea between 1946 and 1948 in Guatemala, and thousands of serologies were performed in individuals belonging to indigenous populations or sheltered in orphanages. The Tuskegee syphilis study, conducted by the US Public Health Service, took place between 1932 and 1972 with the aim of following the natural history of the disease when left untreated...
November 2014: Actas Dermo-sifiliográficas
https://www.readbyqxmd.com/read/24381460/hippocratic-oath-and-conversion-of-ethico-regulatory-aspects-onto-doctors-as-a-physician-private-individual-and-a-clinical-investigator
#12
REVIEW
Mohammed Imran, Shadab Samad, Mohammad Maaz, Ashhar Qadeer, Abul Kalam Najmi, Mohammed Aqil
Hippocratic Oath is a living document for ethical conduct of the physicians around the world. World Medical Association has been amending the oath as per the contemporary times. Although physicians maintain their ethical standards while treating a patient yet many a times social, administrative and ruling powers either use physicians as their tool of oppression or victimize them for conducting duties as per their oath. The Tuskegee Syphilis Study and Human Radiation Experiments in America, Nazi Experiments in Germany and compulsory sterilization program in India were the studies where States used physicians for the advancement of their rationality or belief...
October 2013: Journal of Mid-life Health
https://www.readbyqxmd.com/read/24134384/redressing-past-wrongs-changing-the-common-rule-to-increase-minority-voices-in-research
#13
William C Rencher, Leslie E Wolf
Numerous diseases disproportionately affect African Americans across socioeconomic, age, gender, and geographic groups. Despite the need for research into these disparities, African Americans are often underrepresented in research. The Tuskegee Syphilis Study receives much of the blame for this problem, but other contributing factors have also been identified. To date, government policies seeking to increase African American participation have had limited success, and recently proposed changes to the Common Rule do not address this problem...
December 2013: American Journal of Public Health
https://www.readbyqxmd.com/read/23878499/research-challenges-and-bioethics-responsibilities-in-the-aftermath-of-the-presidential-apology-to-the-survivors-of-the-u-s-public-health-services-syphilis-study-at-tuskegee
#14
Vickie M Mays
In 1997 President William Clinton issued an apology to the living male survivors of the U.S. Public Health Syphilis Study at Tuskegee. While the apology became the focus for many, little attention has been paid going forward to two very important recommendations by President Clinton that accompanied the apology. President Clinton pointed out that it is through the remembering of the shameful past of the Syphilis Study at Tuskegee that we can build a better present and a better future for the nation. Second, President Clinton directed the Secretary of Health and Human Services to work in partnership with higher education to prepare training materials for medical researchers as well as postgraduate fellowships to train bioethicists to build on core ethical principles of respect for individuals, justice, and informed consent, and how to use these principles effectively in racial/ethnic minority populations, especially African Americans...
2012: Ethics & Behavior
https://www.readbyqxmd.com/read/23813337/community-leaders-perspectives-on-engaging-african-americans-in-biobanks-and-other-human-genetics-initiatives
#15
Aaron G Buseh, Patricia E Stevens, Sandra Millon-Underwood, Leolia Townsend, Sheryl T Kelber
There is limited information about what African Americans think about biobanks and the ethical questions surrounding them. Likewise, there is a gap in capacity to successfully enroll African Americans as biobank donors. The purposes of this community-based participatory study were to: (a) explore African Americans' perspectives on genetics/genomic research, (b) understand facilitators and barriers to participation in such studies, and (c) enlist their ideas about how to attract and sustain engagement of African Americans in genetics initiatives...
October 2013: Journal of Community Genetics
https://www.readbyqxmd.com/read/23630410/the-legacy-of-the-u-s-public-health-services-study-of-untreated-syphilis-in-african-american-men-at-tuskegee-on-the-affordable-care-act-and-health-care-reform-fifteen-years-after-president-clinton-s-apology
#16
Vickie M Mays
This special issue addresses the legacy of the United States Public Health Service Syphilis Study on health reform, particularly the Affordable Care Act (ACA). The 12 manuscripts cover the history and current practices of ethical abuses affecting American Indians, Latinos, Asian Americans and African Americans in the United States and in one case, internationally. Commentaries and essays include the voice of a daughter of one of the study participants in which we learn of the stigma and maltreatment some of the families experienced and how the study has impacted generations within the families...
November 1, 2012: Ethics & Behavior
https://www.readbyqxmd.com/read/23358288/african-american-participation-in-health-related-research-studies-indicators-for-effective-recruitment
#17
Rosalyn Lang, Vinaya A Kelkar, Jennifer R Byrd, Christopher L Edwards, Margaret Pericak-Vance, Goldie S Byrd
OBJECTIVE: To elucidate factors that influence African American willingness to participate in health-related research studies. METHODS: The African American Alzheimer disease research study group at North Carolina A&T State University designed an in-person questionnaire and surveyed more than 700 African American adults on their willingness to participate in health-related research studies. The questionnaire was distributed and collected in a nonclinical setting during the years 2008 and 2009...
March 2013: Journal of Public Health Management and Practice: JPHMP
https://www.readbyqxmd.com/read/23308036/is-there-a-legacy-of-the-u-s-public-health-syphilis-study-at-tuskegee-in-hiv-aids-related-beliefs-among-heterosexual-african-americans-and-latinos
#18
Vickie M Mays, Courtney N Coles, Susan D Cochran
Knowledge of the US Public Health Syphilis Study at Tuskegee is sometime cited as a principal reason for the relatively low participation rates seen among racial/ethnic minorities, particularly African Americans, in biomedical research. However, only a few studies have actually explored this possibility. We use data from a random digit dial telephone survey of 510 African-Americans and 253 Latinos, age 18 to 45 years, to investigate associations between knowledge of the USPHS Syphilis Study at Tuskegee and endorsement of HIV/AIDS conspiracy theories...
January 1, 2012: Ethics & Behavior
https://www.readbyqxmd.com/read/23124504/tuskegee-redux-evolution-of-legal-mandates-for-human-experimentation
#19
Robert S Levine, Jamila C Williams, Barbara A Kilbourne, Paul D Juarez
Human health experiments systematically expose people to conditions beyond the boundaries of medical evidence. Such experiments have included legal-medical collaboration, exemplified in the U.S. by the Public Health Service (PHS) Syphilis Study (Tuskegee). That medical experiment was legal, conforming to segregationist protocols and specific legislative authorization which excluded a selected group of African Americans from any medical protection from syphilis. Subsequent corrective action outlawed unethical medical experiments but did not address other forms of collaboration, including PHS submission to laws which may have placed African American women at increased risk from AIDS and breast cancer...
November 2012: Journal of Health Care for the Poor and Underserved
https://www.readbyqxmd.com/read/23124502/community-health-workers-support-community-based-participatory-research-ethics-lessons-learned-along-the-research-to-practice-to-community-continuum
#20
RANDOMIZED CONTROLLED TRIAL
Selina A Smith, Daniel S Blumenthal
Ethical principles of community-based participatory research (CBPR)--specifically, community engagement, mutual learning, action-reflection, and commitment to sustainability--stem from the work of Kurt Lewin and Paulo Freire. These are particularly relevant in cancer disparities research because vulnerable populations are often construed to be powerless, supposedly benefiting from programs over which they have no control. The long history of exploiting minority individuals and communities for research purposes (the U...
November 2012: Journal of Health Care for the Poor and Underserved
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