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Barsdorf N.,University of Bergen | Maman S.,University of North Carolina | Kass N.,The Johns Hopkins Berman Institute of Bioethics | Slack C.,University of KwaZulu - Natal
Developing World Bioethics | Year: 2010

Access to treatment, in HIV vaccine trials (HVTs), remains et al. In most prevention trials, including in South Africa, participants who seroconvert are referred to publicly funded programmes for treatment. This strategy is problematic when there is inadequate and uneven access to public sector antiretroviral therapy (ART) and support resources. The responsibilities, if any, of researchers, sponsors and public health authorities involved in HVTs has been hotly debated among academics, scholars, representatives of international organizations and sponsors. However, there is little published on community perceptions. Recent guidance asserts that communities should make inputs into treatment and care decisions. This qualitative study explored a South African community's perceptions of who should provide what to HVT participants as well as how and why this should be done. Twenty-nine adults working at or attending five primary health care clinics in two rural areas in KwaZulu-Natal participated in in-depth interviews. Respondents expressed that researchers should 'help participants to access' treatment and care 'because they are in a position to do so' and 'are in a relationship with' trial participants. Respondents suggested that researchers could help by 'facilitating referral' until such time that participants can access care and treatment on their own. We highlight a series of implications for researchers in HVTs, including their need to be aware of prospective participants' considerable trust in and respect for researchers, the responsibility that this places on them, and the need for clear communication with communities so as not to erode community trust. © 2009 Blackwell Publishing Ltd.

Lipton M.,University of Sussex | Saghai Y.,The Johns Hopkins Berman Institute of Bioethics
Global Food Security | Year: 2016

Though reducible by known means, food insecurity remains widespread, with tightening constraints on alternative policies to address it. In this article, we argue that in many developing countries more equal distribution of land is a key, yet often neglected, policy option, and that state-led land reform remains a major, ethically defensible route for addressing food insecurity and related disadvantages. In assessing empirically and ethically redistributive land reform to smallholders, we seek to advance the debate in global food security and to make a contribution to farmland-access ethics, that is, the moral evaluation of actions, practices, policies, and laws that affect farmland distribution, allocation, and use. © 2016 Elsevier B.V.

Haywood Jr. C.,The Johns Hopkins Berman Institute of Bioethics
Journal of Hospital Medicine | Year: 2011

Background: Although sickle cell disease (SCD) patients typically manage their pain at home, a small subgroup is frequently hospitalized and accounts for the majority of costs. Objectives: 1) To identify prospective diagnostic and demographic markers of new periods of high utilization; 2) To identify demographic and diagnostic markers of a persistent rather than moderating course of high utilization; 3) To replicate the finding that high utilization tends to moderate. Design: The State Inpatient Databases for California, 2004-2007, were used. Patients with new onset periods of high utilization were compared with non-high utilizers, and new high utilizers who moderated were compared with those who had a persistent course. Setting: All hospitals in the state of California. Patients: Patients age 13 years or older in 2004 with a recorded diagnosis of sickle cell disease and at least one hospitalization for crisis during the study period. Measures: Methods: Groups from hospitals throughout California were compared on demographics and discharge diagnoses of SCD complications and comorbidities. Patients age 13 years or older in 2004 with a recorded diagnosis of sickle cell disease and at least 1 hospitalization for crisis during the study period were included. Results: New periods of high utilization were associated with more prior hospitalizations and previous diagnoses of aseptic necrosis and renal disease. High utilization typically moderated. A persistent course was associated with slightly more hospitalizations during the initial year of high utilization, and, subsequently, by more mentions of septicemia and mood disorders. Conclusions: Overall, high utilization was difficult to predict, as was its course. The diagnoses most associated with high utilization indicated more severe sickle cell disease. Septicemia deserves further investigation as a preventable cause for high utilization, as do mood disorders. © 2010 Society of Hospital Medicine.

Pratt B.,The Johns Hopkins Berman Institute of Bioethics | Hyder A.A.,The Johns Hopkins Berman Institute of Bioethics
Journal of Law, Medicine and Ethics | Year: 2015

Scholarship focusing on how international research can contribute to justice in global health has primarily explored requirements for the conduct of clinical trials. Yet health systems research in low- and middle-income countries (LMICs) has increasingly been identified as vital to the reduction of health disparities between and within countries. This paper expands an existing ethical framework based on the health capability paradigm - research for health justice - to externally-funded health systems research in LMICs. It argues that a specific form of health systems research in LMICs is required if the enterprise is to advance global health equity. "Research for health justice" requirements for priority setting, research capacity strengthening, and post-study benefits in health systems research are derived in light of the field's distinctive characteristics. Specific obligations are established for external research actors, including governments, funders, sponsors, and investigators. How these framework requirements differ from those for international clinical research is discussed. © 2015 American Society of Law, Medicine & Ethics, Inc.

Haywood C.,The Johns Hopkins Berman Institute of Bioethics | Bediako S.,University of Maryland Baltimore County | Onojobi G.,Howard University | Beach M.C.,The Johns Hopkins Berman Institute of Bioethics
Journal of General Internal Medicine | Year: 2014

BACKGROUND: Adults with sickle cell disease (SCD) report experiencing discriminatory behavior from some healthcare providers. The impact of discrimination on health outcomes in SCD, including adherence to physician recommendations, is not known.OBJECTIVE: Our aim was to evaluate the association between perceived discrimination from healthcare providers and nonadherence to physician recommendations among persons with SCD, and to test the potentially mediating role of patient trust.PARTICIPANTS: Patients with SCD (age 15 years and older) participating in the Improving Patient Outcomes with Respect and Trust (IMPORT) Study.MAIN MEASURES: Perceived discrimination from healthcare providers and reported adherence to physician recommendations were assessed by patient self-report using items from the 2001 Commonwealth Fund Health Survey. Interpersonal trust in medical professionals was assessed using the short form of the Wake Forest Trust in Medical Professionals instrument.DESIGN: We used a cross-sectional analysis of IMPORT participant data. Multivariable Poisson regression models were used to test the independent association of discrimination with adherence and to test patient trust as a potential mediator.KEY RESULTS: Among 273 SCD patients with complete data on all variables of interest, patients reporting experiences of discrimination in the healthcare system were 53 % more likely to also report being nonadherent to physician recommendations. Trust in medical professionals appeared to mediate the discrimination/nonadherence relationship, accounting for 50 % of the excess prevalence of nonadherence among those experiencing discrimination.CONCLUSION: SCD patient perceptions of discriminatory experiences from healthcare providers are associated with greater nonadherence to physician recommendations, and may be a potential factor contributing to disparities in health and health quality among this patient population. Perceived discrimination appears to affect adherence behaviors through the pathway of patient trust. Improving relationships between healthcare providers and SCD patients may improve the trust that SCD patients have in medical professionals, which in turn may improve other outcomes among this underserved patient population. © 2014, Society of General Internal Medicine.

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