Jane Sugarman
Dados Biográficos
| ID | 227173 |
|---|---|
| NOME | Jane Sugarman |
| PRENOMES | Jane |
| SOBRENOME | Sugarman |
| ASSINATURA | SUGARMAN J |
| AFILIAÇÕES | Johns Hopkins University |
| ORCID | 0000-0001-7022-8332 |
| VERIFICADO | Sim |
| TOTAL DE OBRAS | 51 |
| TOTAL DE CITAÇÕES | 33 |
| TOTAL COMO AUTOR | 51 |
| TOTAL COMO EDITOR | 0 |
| PRIMEIRO ANO DE PUBLICAÇÃO | 1985 |
| ANO MAIS RECENTE DE PUBLICAÇÃO | 2026 |
| ÍNDICE H | 3 |
Impact of Legal Perceptions and Disclosure on Willingness to Undergo HIV Antiretroviral Resistance Testing Among Men Who Have Sex with Men
Enhancing Research Ethics Capacity in Asia
Several Asian countries, including India, Malaysia, Myanmar, and Pakistan, face challenges aligning rapid healthcare and biomedical research growth with necessary ethics oversight. To help address this, the Fogarty International Center of the United States National Institutes of Health funded initiatives to enhance research ethics capacities in these countries. In India, the Yenepoya University's Master's in Research Ethics program was establishe…
Defining Malaysia's health research ethics system through a stakeholder driven approach
The need to understand the systems that support ethical health research has long been recognized, but there are limited descriptions of actual health research ethics (HRE) systems. Using participatory network mapping methods, we empirically defined Malaysia's HRE system. 13 Malaysian stakeholders identified 4 overarching and 25 specific HRE system functions and 35 actors internal and 3 external to the Malaysian HRE system responsible for those fu…
Expectations of preventative benefits and risk behaviors in a randomized trial evaluating oral HIV preexposure prophylaxis candidates
When participants enrolled in an HIV prevention trial hold a preventive misconception (PM) - expectations that experimental interventions will confer protection from HIV infection - they may engage in behaviors that increase their risk of acquiring HIV. This can raise ethical concerns about whether those enrolled in the trial understand the nature of participation and their safety. Consequently, we systematically evaluated the prevalence of PM an…
Prioritization of ethical concerns regarding HIV molecular epidemiology by public health practitioners and researchers
The ethical issues of HIV ME vary in importance among stakeholders, reflecting different perspectives on the potential impact and usefulness of the data. Knowing these differences exist can directly inform the focus of future deliberations about the policies and practices of HIV ME in the United States
Recall and Appraisal of the Risks, Benefits, and Objectives of Interrupting HIV Treatment in an HIV Cure-Related Study
Perceptions of Molecular HIV Surveillance Among Men Who Have Sex with Men in the United States
Developing a competency framework for health research ethics education and training
Health research ethics (HRE) training programmes are being developed and implemented globally, often with a goal of increasing local capacity to assure ethical conduct in health-related research. Yet what it means for there to be sufficient HRE capacity is not well-defined, and there is currently no consensus on outcomes that HRE training programmes should collectively intend to achieve. Without defining the expected outcomes, meaningful evaluati…
Toward Meeting the Obligation of Respect for Persons in Pragmatic Clinical Trials
Research ethics oversight systems have traditionally emphasized the informed consent process as the primary means by which to demonstrate respect for prospective subjects. Yet how researchers can best fulfill the ethical obligations of respect for persons in pragmatic clinical trials (PCTs)—particularly those that may alter or waive informed consent—remains unknown. We propose eight dimensions of demonstrating respect in PCTs: (1) engaging patien…
Allocation of Opportunities to Participate in Clinical Trials during the Covid‐19 Pandemic and Other Public Health Emergencies
Covid‐19 raised many novel ethical issues including regarding the allocation of opportunities to participate in clinical trials during a public health emergency. In this article, we explore how hospitals that have a scarcity of trial opportunities, either overall or in a specific trial, can equitably allocate those opportunities in the context of an urgent medical need with limited therapeutic interventions. We assess the three main approaches to…
Barriers experienced by organ procurement organizations in implementing the Hope act and HIV-positive organ donation
In the seven years since the HIV Organ Policy Equity (HOPE) Act made HIV-positive organ donation to HIV-positive recipients legally permissible in the United States, there have been fewer HIV-positive organ donations than expected. Organ procurement organizations (OPOs) play a key role in the transplant system and barriers at OPOs may be partly responsible for the relatively low number of HIV-positive donors. To understand potential OPO barriers,…
Cabotegravir for HIV Prevention in Cisgender Men and Transgender Women
BACKGROUND: Safe and effective long-acting injectable agents for preexposure prophylaxis (PrEP) for human immunodeficiency virus (HIV) infection are needed to increase the options for preventing HIV infection. METHODS: We conducted a randomized, double-blind, double-dummy, noninferiority trial to compare long-acting injectable cabotegravir (CAB-LA, an integrase strand-transfer inhibitor [INSTI]) at a dose of 600 mg, given intramuscularly every 8 …
Rethinking Human Embryo Research Policies
It now seems technically feasible to culture human embryos beyond the “fourteen‐day limit,” which has the potential to increase scientific understanding of human development and perhaps improve infertility treatments. The fourteen‐day limit was adopted as a compromise but subsequently has been considered an ethical line. Does it remain relevant in light of technological advances permitting embryo maturation beyond it? Should it be changed and, if…
Perceptions, motivations, and concerns about living organ donation among people living with HIV
Recent changes to United States law now permit people living with HIV (PLWH) to donate organs to HIV-infected (HIV+) recipients under research protocols. PLWH may have unique motivations for and concerns about living donation and understanding them is critical to ensuring the integrity of this novel approach to organ transplantation. We conducted in-depth interviews with PLWH from an urban HIV clinic who had previously indicated their willingness…
Evidence-Based Strategies for Shortening Informed Consent Forms in Clinical Research
Long informed consent forms (ICFs) remain commonplace, yet they can negatively affect potential participants' understanding of clinical research. We aimed to build consensus among six groups of key stakeholders on advancing the use of shorter ICFs in clinical research. Partnering with the HIV Prevention Trials Network (HPTN), we used a modified Delphi process with semistructured interviews and online surveys. Concerns about redundancy of informat…
Comparison of Approaches for Notification and Authorization in Pragmatic Clinical Research Evaluating Commonly Used Medical Practices
BACKGROUND: For pragmatic clinical research comparing commonly used treatments, questions exist about if and how to notify participants about it and secure their authorization for participation. OBJECTIVE: To determine how patients react when they seek clinical care and encounter one of several different pragmatic clinical research studies. RESEARCH DESIGN: In an online survey using a between-subjects experimental design, respondents read and res…
Perceptions of a short-term medical programme in the Dominican Republic
Participation in short-term global health programmes for low-income countries is increasing amongst practising clinicians and trainees from high-income countries. However, few studies explicitly examine the perceptions of programme recipients. In July 2012, we conducted semi-structured interviews with a purposive sample of 47 adults receiving care from Medical Ministry International, an international non-governmental organisation providing short-…
An ethics curriculum for short-term global health trainees
BACKGROUND: Interest in short-term global health training and service programs continues to grow, yet they can be associated with a variety of ethical issues for which trainees or others with limited global health experience may not be prepared to address. Therefore, there is a clear need for educational interventions concerning these ethical issues. METHODS: We developed and evaluated an introductory curriculum, "Ethical Challenges in Short-term…
Ethical Considerations in Determining Standard of Prevention Packages for HIV Prevention Trials
The successful demonstration that antiretroviral ( ARV ) drugs can be used in diverse ways to reduce HIV acquisition or transmission risks – either taken as pre‐exposure prophylaxis ( PrEP ) by those who are uninfected or as early treatment for prevention ( T4P ) by those living with HIV – expands the armamentarium of existing HIV prevention tools. These findings have implications for the design of future HIV prevention research trials. With the …
Guidelines for International Service Learning Programs
Purpose and Benefits of Early Phase Cancer Trials
CANCER PATIENTS OVERESTIMATE BENEFITS of early phase trials but studies have not reported what oncologists say to patients about trials. We audiotaped oncologists talking to cancer patients about Phase I or II trials and interviewed patients about the purpose and expected outcomes of trials presented to them. Oncologists gave mixed messages, saying Phase I trials measure safety and dosing, yet referring to trials as treatment with uncertain thera…
Goals of Medicine in the Course of History and Today
Reviewed by: Goals of Medicine in the Course of History and Today: A Study in the History and Philosophy of Medicine Jeremy Sugarman Kurt Fleischhauer and Göran Hermerén . Goals of Medicine in the Course of History and Today: A Study in the History and Philosophy of Medicine. Stockholm: Kungl. Vitterhets Historie och Antikvitets Akademien, 2006. 480 pp. SEK 366.00 (91-7402-353-5). This volume is the product of collaboration between a physician (K…
Bioethics Consultation in the Private Sector
Bioethics consultation is flourishing in the private sector. The corporate clients are aware that their work raises substantive ethical issues, and often they are concerned about how their response to these issues may affect their public image and their financial standing. Many are prepared to compensate ethics consultants at substantial rates. This is a new phenomenon for the field of bioethics. Traditionally, most requests for comment and analy…
Measuring Trust in Medical Researchers
BACKGROUND: Concern is widespread that the public's and participants' trust in medical research is threatened, but few empirical measures of research trust exist. This project aims to enable more rigorous study of researcher trust by developing and testing appropriate survey measures. METHODS: Survey items were developed based on a conceptual model of the primary domains of researcher trust (safety, fidelity, honesty, global trust). Pilot testing…
Policy & Politics
Jeremy Sugarman, Policy & Politics: Should the Gold Rule? Assessing "Equivalent Protections" for Research Participants across International Borders, The Hastings Center Report, Vol. 35, No. 5 (Sep. - Oct., 2005), pp. 12-13
Ethical Goals of Community Consultation in Research
In response to the traditional emphasis on the rights, interests, and well-being of individual research subjects, there has been growing attention focused on the importance of involving communities in research development and approval. Community consultation is a particularly common method of involving communities. However, the fundamental ethical goals of community consultation have not been delineated, which makes it difficult for investigators…
Disclosure of cancer diagnosis and prognosis in Northern Tanzania
Semantic and Pragmatic Variability in Medical Research Terms
Research Article| May 01 2000 SEMANTIC AND PRAGMATIC VARIABILITY IN MEDICAL RESEARCH TERMS: IMPLICATIONS FOR OBTAINING MEANINGFUL INFORMED CONSENT RONALD R. BUTTERS; RONALD R. BUTTERS Search for other works by this author on: This Site Google JEREMY SUGARMAN; JEREMY SUGARMAN Search for other works by this author on: This Site Google LYLA KAPLAN LYLA KAPLAN Search for other works by this author on: This Site Google American Speech (2000) 75 (2): 1…
Bioethics Consultation in the Private Sector
Bioethics consultation is flourishing in the private sector. The corporate clients are aware that their work raises substantive ethical issues, and often they are concerned about how their response to these issues may affect their public image and their financial standing. Many are prepared to compensate ethics consultants at substantial rates. This is a new phenomenon for the field of bioethics. Traditionally, most requests for comment and analy…
Evidence-Based Strategies for Shortening Informed Consent Forms in Clinical Research
Long informed consent forms (ICFs) remain commonplace, yet they can negatively affect potential participants' understanding of clinical research. We aimed to build consensus among six groups of key stakeholders on advancing the use of shorter ICFs in clinical research. Partnering with the HIV Prevention Trials Network (HPTN), we used a modified Delphi process with semistructured interviews and online surveys. Concerns about redundancy of informat…
Purpose and Benefits of Early Phase Cancer Trials
CANCER PATIENTS OVERESTIMATE BENEFITS of early phase trials but studies have not reported what oncologists say to patients about trials. We audiotaped oncologists talking to cancer patients about Phase I or II trials and interviewed patients about the purpose and expected outcomes of trials presented to them. Oncologists gave mixed messages, saying Phase I trials measure safety and dosing, yet referring to trials as treatment with uncertain thera…
Linguistics
Recognizing Good Decisionmaking for Incapacitated Patients
Coventional medical ethics champions formal advance directives as a means of determining morally appropriate medical care for decisionally incapacitated individuals, and recent legislation such as the Patient Self determination Act implies plies that advance directives are politically acceptable. These observation suggest that advance directives might count as a good method of decision making for decisionally in capacitated patients. But how can …
Talking about Futility
Book reviewed in this article: Wrong Medicine. By Lawrence J. Schneiderman and Nancy S. Jecker
Trust
It is widely assumed that informing prospective subjects about the risks and possible benefits of research not only protects their rights as autonomous decisionmakers, but also empowers them to protect their own interests. Yet interviews with patient-subjects conducted under the auspices of the Advisory Committee on Human Radiation Experiments suggest this is not always the case. Patient-subjects often trust their physician to guide them through …
What Patients Say about Medical Research
Jeremy Sugarman, Nancy E. Kass, Steven N. Goodman, Patricia Perentesis, Praveen Fernandes, Ruth R. Faden, What Patients Say about Medical Research, IRB: Ethics & Human Research, Vol. 20, No. 4 (Jul. - Aug., 1998), pp. 1-7
Toward a More Comprehensive Approach to Protecting Human Subjects
Valery M. Gordon, Jeremy Sugarman, Nancy Kass, Toward a More Comprehensive Approach to Protecting Human Subjects: The Interface of Data Safety Monitoring Boards and Institutional Review Boards in Randomized Clinical Trials, IRB: Ethics & Human Research, Vol. 20, No. 1 (Jan. - Feb., 1998), pp. 1-5
Why Study Informed Consent
Ralph Slovenko, Jeremy Sugarman, Douglas C. McCrory, Donald Powell, Alex Krasny, Betsy Adams, Eric Ball, Cynthia Cassell, Why Study Informed Consent?, The Hastings Center Report, Vol. 29, No. 4 (Jul. - Aug., 1999), p. 4
Special Supplement
Jeremy Sugarman, Douglas C. McCrory, Donald Powell, Alex Krasny, Betsy Adams, Eric Ball, Cynthia Cassell, Special Supplement: Empirical Research on Informed Consent: An Annotated Bibliography, The Hastings Center Report, Vol. 29, No. 1 (Jan. - Feb., 1999), pp. S1-S42
Engendering Song
Toward Justice in Human Subjects Research
Semantic and Pragmatic Variability in Medical Research Terms
Research Article| May 01 2000 SEMANTIC AND PRAGMATIC VARIABILITY IN MEDICAL RESEARCH TERMS: IMPLICATIONS FOR OBTAINING MEANINGFUL INFORMED CONSENT RONALD R. BUTTERS; RONALD R. BUTTERS Search for other works by this author on: This Site Google JEREMY SUGARMAN; JEREMY SUGARMAN Search for other works by this author on: This Site Google LYLA KAPLAN LYLA KAPLAN Search for other works by this author on: This Site Google American Speech (2000) 75 (2): 1…
Albania
Taking a Hard Look at Advocacy in Research
So much for keeping secrets
Little data are available from patients' perspectives regarding the maintenance of confidentiality by care providers. Such data may be useful in determining the importance of confidentiality to patients and in developing appropriate policies and procedures regarding confidentiality. Three focus groups were conducted with support groups of rural HIV-positive patients. Text was coded inductively and analyzed with software designed for qualitative a…
Modernity, postmodernity, and psychology
The Task Force Responds
Baruch Brody, Nancy Dubler, Jeff Blustein, Arthur Caplan, Jeffrey P. Kahn, Nancy Kass, Bernard Lo, Jonathan Moreno, Jeremy Sugarman, Laurie Zoloth, The Task Force Responds, The Hastings Center Report, Vol. 32, No. 3 (May - Jun., 2002), pp. 22-23
Improving Informed Consent
Patricia Agre, Frances A. Campbell, Barbara D. Goldman, Maria L. Boccia, Nancy Kass, Laurence B. McCullough, Jon F. Merz, Suzanne M. Miller, Jim Mintz, Bruce Rapkin, Jeremy Sugarman, James Sorenson, Donna Wirshing, Improving Informed Consent: The Medium Is Not the Message, IRB: Ethics & Human Research, Vol. 25, No. 5, Supplement (Sep. - Oct., 2003), pp. S11-S19
Conducting Empirical Research on Informed Consent
Greg A. Sachs, Gavin W. Hougham, Jeremy Sugarman, Patricia Agre, Marion E. Broome, Gail Geller, Nancy Kass, Eric Kodish, Jim Mintz, Laura W. Roberts, Pamela Sankar, Laura A. Siminoff, James Sorenson, Anita Weiss, Conducting Empirical Research on Informed Consent: Challenges and Questions, IRB: Ethics & Human Research, Vol. 25, No. 5, Supplement (Sep. - Oct., 2003), pp. S4-S10
Research Oversight through New Lenses
Jeremy Sugarman, Lisa A. Eckenwiler, Ezekiel J. Emanuel, Research Oversight through New Lenses: The Consortium to Examine Clinical Research Ethics, IRB: Ethics & Human Research, Vol. 25, No. 1 (Jan. - Feb., 2003), pp. 9-10
Empirical Research on Informed Consent with the Cognitively Impaired
Gavin W. Hougham, Greg A. Sachs, Deborah Danner, Jim Mintz, Marian Patterson, Laura W. Roberts, Laura A. Siminoff, Jeremy Sugarman, Peter J. Whitehouse, Donna Wirshing, Empirical Research on Informed Consent with the Cognitively Impaired, IRB: Ethics & Human Research, Vol. 25, No. 5, Supplement (Sep. - Oct., 2003), pp. S26-S32
Back to the Rough Ground
Kathleen M. MacQueen, Jeremy Sugarman, Back to the Rough Ground: Working in International HIV Prevention as Ethical Debates Continue, IRB: Ethics & Human Research, Vol. 25, No. 2 (Mar. - Apr., 2003), pp. 11-13
Disclosure of cancer diagnosis and prognosis in Northern Tanzania
The Limitations of “Vulnerability” as a Protection for Human Research Participants
Vulnerability is one of the least examined concepts in research ethics. Vulnerability was linked in the Belmont Report to questions of justice in the selection of subjects. Regulations and policy documents regarding the ethical conduct of research have focused on vulnerability in terms of limitations of the capacity to provide informed consent. Other interpretations of vulnerability have emphasized unequal power relationships between politically …
Moral Standards for Research in Developing Countries from "Reasonable Availability" to "Fair Benefits"
Maged El Setouhy, Tsiri Agbenyega, Francis Anto, Christine Alexandra Clerk, Kwadwo A. Koram, Michael English, Rashid Juma, Catherine Molyneux, Norbert Peshu, Newton Kumwenda, Joseph Mfutso-Bengu, Malcolm Molyneux, Terrie Taylor, Doumbia Aissata Diarra, , Mamadou Sylla, Dione Youssouf, Catherine Olufunke Falade, Segun Gbadegesin, Reidar Lie, Ferdinand Mugusi, David Ngassapa, Julius Ecuru, Ambrose Talisuna, Ezekiel Emanuel, Christine Grady, Elizabe…
A Reference in Research Ethics
Education in the ethics of research with human participants has now moved well beyond secluded seminars in graduate schools. For example, the National Institutes of Health now requires research ethics education for principal investigators and key personnel who receive extramural funding. Similarly, recipients of federal training grants in science must provide education in the responsible conduct of research for their trainees. Academic medical ce…
Medicine (33 obras) · Psychology (32 obras) · Ethics in Clinical Research (26 obras) · Political science (19 obras) · Ethics in medical practice (14 obras) · Engineering (12 obras) · Engineering ethics (12 obras) · Law (12 obras) · Computer Science (11 obras) · Alternative medicine (10 obras)