97 found
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  1.  21
    Do Clinicians Have a Duty to Participate in Pragmatic Clinical Trials?Andrew Garland, Stephanie Morain & Jeremy Sugarman - 2022 - American Journal of Bioethics 23 (8):22-32.
    Clinicians have good moral and professional reasons to contribute to pragmatic clinical trials (PCTs). We argue that clinicians have a defeasible duty to participate in this research that takes place in usual care settings and does not involve substantive deviation from their ordinary care practices. However, a variety of countervailing reasons may excuse clinicians from this duty in particular cases. Yet because there is a moral default in favor of participating, clinicians who wish to opt out of this research must (...)
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  2. The limitations of "vulnerability" as a protection for human research participants.Carol Levine, Ruth Faden, Christine Grady, Dale Hammerschmidt, Lisa Eckenwiler & Jeremy Sugarman - 2004 - American Journal of Bioethics 4 (3):44 – 49.
    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 and economically disadvantaged groups and investigators or sponsors. So many groups are now considered to be vulnerable in (...)
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  3.  14
    Ethics and Collateral Findings in Pragmatic Clinical Trials.Stephanie R. Morain, Kevin Weinfurt, Juli Bollinger, Gail Geller, Debra J. H. Mathews & Jeremy Sugarman - 2020 - American Journal of Bioethics 20 (1):6-18.
    Pragmatic clinical trials offer important benefits, such as generating evidence that is suited to inform real-world health care decisions and increasing research efficiency. However, PCTs also present ethical challenges. One such challenge involves the management of information that emerges in a PCT that is unrelated to the primary research question, yet may have implications for the individual patients, clinicians, or health care systems from whom or within which research data were collected. We term these findings as?pragmatic clinical trial collateral findings,? (...)
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  4.  33
    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, Saibou Maiga, Mamadou Sylla, Dione Youssouf, Catherine Olufunke Falade, Segun Gbadegesin, Reidar Lie, Ferdinand Mugusi, David Ngassapa, Julius Ecuru, Ambrose Talisuna, Ezekiel Emanuel, Christine Grady, Elizabeth Higgs, Christopher Plowe, Jeremy Sugarman & David Wendler - 2004 - Hastings Center Report 34 (3):17.
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  5.  22
    Toward Meeting the Obligation of Respect for Persons in Pragmatic Clinical Trials.Stephanie R. Morain, Stephanie A. Kraft, Benjamin S. Wilfond, Amy Mcguire, Neal W. Dickert, Andrew Garland & Jeremy Sugarman - 2022 - Hastings Center Report 52 (3):9-17.
    Hastings Center Report, Volume 52, Issue 3, Page 9-17, May–June 2022.
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  6.  62
    Trust: The Fragile Foundation of Contemporary Biomedical Research.Nancy E. Kass, Jeremy Sugarman, Ruth Faden & Monica Schoch-Spana - 1996 - Hastings Center Report 26 (5):25-29.
    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 decisions on research participation. Clinicians, investigators, and IRBs must assure that such trust is not misplaced.
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  7.  46
    Evaluating community engagement in global health research: the need for metrics.Kathleen M. MacQueen, Anant Bhan, Janet Frohlich, Jessica Holzer & Jeremy Sugarman - 2015 - BMC Medical Ethics 16 (1):1-9.
    BackgroundCommunity engagement in research has gained momentum as an approach to improving research, to helping ensure that community concerns are taken into account, and to informing ethical decision-making when research is conducted in contexts of vulnerability. However, guidelines and scholarship regarding community engagement are arguably unsettled, making it difficult to implement and evaluate.DiscussionWe describe normative guidelines on community engagement that have been offered by national and international bodies in the context of HIV-related research, which set the stage for similar work (...)
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  8.  25
    Examining Provisions Related to Consent in the Revised Common Rule.Jeremy Sugarman - 2017 - American Journal of Bioethics 17 (7):22-26.
    The long-standing overarching policy governing research with human subjects conducted and supported by most federal agencies and departments in the United States, known as the Common Rule, has recently been revised, with most requirements slated to become effective in 2018. Although there are multiple alterations to the current regulations, some of the most significant changes aim to enhance consent for research. While some of the particular provisions in this regard will be easy to apply and promise to help meet this (...)
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  9.  84
    Ethics in human subjects research: Do incentives matter?Ruth W. Grant & Jeremy Sugarman - 2004 - Journal of Medicine and Philosophy 29 (6):717 – 738.
    There is considerable confusion regarding the ethical appropriateness of using incentives in research with human subjects. Previous work on determining whether incentives are unethical considers them as a form of undue influence or coercive offer. We understand the ethical issue of undue influence as an issue, not of coercion, but of corruption of judgment. By doing so we find that, for the most part, the use of incentives to recruit and retain research subjects is innocuous. But there are some instances (...)
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  10.  11
    Beyond Consent: Seeking Justice in Research.Jeffrey P. Kahn, Anna C. Mastroianni & Jeremy Sugarman (eds.) - 1998 - Oup Usa.
    Beyond Consent examines the concept of justice, and its application to human subject research, through the different lenses of various research populations: children, the vulnerable sick, captive and convenient populations, women, people of colour, and subjects in international settings. Separate chapters address the evolution of research policies, implications of the concept of justice for the future of human subject research, and the ramifications of this concept throughout the research enterprise.
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  11.  21
    Empirical Research on Informed Consent: An Annotated Bibliography.Jeremy Sugarman, Douglas C. McCrory, Donald Powell, Alex Krasny, Betsy Adams, Eric Ball & Cynthia Cassell - 1999 - Hastings Center Report 29 (1):1-42.
  12.  57
    Addressing ethical challenges in HIV prevention research with people who inject drugs.Liza Dawson, Steffanie A. Strathdee, Alex John London, Kathryn E. Lancaster, Robert Klitzman, Irving Hoffman, Scott Rose & Jeremy Sugarman - 2018 - Journal of Medical Ethics 44 (3):149-158.
    Despite recent advances in HIV prevention and treatment, high HIV incidence persists among people who inject drugs. Difficult legal and political environments and lack of services for PWID likely contribute to high HIV incidence. Some advocates question whether any HIV prevention research is ethically justified in settings where healthcare system fails to provide basic services to PWID and where implementation of research findings is fraught with political barriers. Ethical challenges in research with PWID include concern about whether research evidence will (...)
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  13.  43
    Addressing ethical challenges in HIV prevention research with people who inject drugs.Liza Dawson, Steffanie A. Strathdee, Alex John London, Kathryn E. Lancaster, Robert Klitzman, Irving Hoffman, Scott Rose & Jeremy Sugarman - 2018 - Journal of Medical Ethics Recent Issues 44 (3):149-158.
    Despite recent advances in HIV prevention and treatment, high HIV incidence persists among people who inject drugs. Difficult legal and political environments and lack of services for PWID likely contribute to high HIV incidence. Some advocates question whether any HIV prevention research is ethically justified in settings where healthcare system fails to provide basic services to PWID and where implementation of research findings is fraught with political barriers. Ethical challenges in research with PWID include concern about whether research evidence will (...)
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  14.  53
    Patients' Views on Identifiability of Samples and Informed Consent for Genetic Research.Sara Chandros Hull, Richard Sharp, Jeffrey Botkin, Mark Brown, Mark Hughes, Jeremy Sugarman, Debra Schwinn, Pamela Sankar, Dragana Bolcic-Jankovic, Brian Clarridge & Benjamin Wilfond - 2008 - American Journal of Bioethics 8 (10):62-70.
    It is unclear whether the regulatory distinction between non-identifiable and identifiable information—information used to determine informed consent practices for the use of clinically derived samples for genetic research—is meaningful to patients. The objective of this study was to examine patients' attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research. Telephone interviews were conducted with 1,193 patients recruited from general medicine, thoracic surgery, or medical oncology clinics at five United States academic medical centers. Wanting to know (...)
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  15.  44
    Dealing With the Long-Term Social Implications of Research.Jeremy Sugarman, Dale E. Hammerschmidt, Christine Grady, Lisa Eckenwiler, Carol Levine & Alan Fleischman - 2011 - American Journal of Bioethics 11 (5):5-9.
    Biomedical and behavioral research may affect strongly held social values and thereby create significant controversy over whether such research should be permitted in the first place. Institutional review boards responsible for protecting the rights and welfare of participants in research are sometimes faced with review of protocols that have significant implications for social policy and the potential for negative social consequences. Although IRB members often raise concerns about potential long-term social implications in protocol review, federal regulations strongly discourage IRBs from (...)
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  16.  18
    Reframing Recruitment: Evaluating Framing in Authorization for Research Contact Programs.Candace D. Speight, Charlie Gregor, Yi-An Ko, Stephanie A. Kraft, Andrea R. Mitchell, Nyiramugisha K. Niyibizi, Bradley G. Phillips, Kathryn M. Porter, Seema K. Shah, Jeremy Sugarman, Benjamin S. Wilfond & Neal W. Dickert - 2021 - AJOB Empirical Bioethics 12 (3):206-213.
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  17.  21
    The Future of Empirical Research in Bioethics.Jeremy Sugarman - 2004 - Journal of Law, Medicine and Ethics 32 (2):226-231.
    Empirical research in bioethics can be defined as the application of research methods in the social sciences to the direct examination of issues in [bioethics]. As such, empirical work is a form of descriptive ethics, focused on describing a particular state of affairs that has some moral or ethical relevance. For example, empirical research can help to describe cultural beliefs about the appropriateness of providing health-related information, such as the diagnosis of a life-threatening illness, which informs deliberations about the extent (...)
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  18.  44
    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 - 2002 - Hastings Center Report 32 (3):22-23.
  19.  15
    The Future of Empirical Research in Bioethics.Jeremy Sugarman - 2004 - Journal of Law, Medicine and Ethics 32 (2):226-231.
    Empirical research in bioethics can be defined as the application of research methods in the social sciences to the direct examination of issues in [bioethics]. As such, empirical work is a form of descriptive ethics, focused on describing a particular state of affairs that has some moral or ethical relevance. For example, empirical research can help to describe cultural beliefs about the appropriateness of providing health-related information, such as the diagnosis of a life-threatening illness, which informs deliberations about the extent (...)
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  20.  55
    Medical and nursing students' television viewing habits: Potential implications for bioethics.Matthew J. Czarny, Ruth R. Faden, Marie T. Nolan, Edwin Bodensiek & Jeremy Sugarman - 2008 - American Journal of Bioethics 8 (12):1 – 8.
    Television medical dramas frequently depict the practice of medicine and bioethical issues in a strikingly realistic but sometimes inaccurate fashion. Because these shows depict medicine so vividly and are so relevant to the career interests of medical and nursing students, they may affect these students' beliefs, attitudes, and perceptions regarding the practice of medicine and bioethical issues. We conducted a web-based survey of medical and nursing students to determine the medical drama viewing habits and impressions of bioethical issues depicted in (...)
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  21.  20
    Categorizing Empirical Research in Bioethics: Why Count the Ways?Jeremy Sugarman, Nancy Kass & Ruth Faden - 2009 - American Journal of Bioethics 9 (6-7):66-67.
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  22.  60
    Patients' views concerning research on medical practices: Implications for consent.Kevin P. Weinfurt, Juli M. Bollinger, Kathleen M. Brelsford, Travis J. Crayton, Rachel J. Topazian, Nancy E. Kass, Laura M. Beskow & Jeremy Sugarman - 2016 - AJOB Empirical Bioethics 7 (2):76-91.
  23.  18
    Special Supplement: Empirical Research on Informed Consent: An Annotated Bibliography.Jeremy Sugarman, Douglas C. McCrory, Donald Powell, Alex Krasny, Betsy Adams, Eric Ball & Cynthia Cassell - 1999 - Hastings Center Report 29 (1):S1.
  24.  30
    What Patients Say about Medical Research.Jeremy Sugarman, Nancy E. Kass, Steven N. Goodman, Patricia Perentesis, Praveen Fernandes & Ruth R. Faden - 1998 - IRB: Ethics & Human Research 20 (4):1.
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  25.  76
    Ethical Considerations in Determining Standard of Prevention Packages for HIV Prevention Trials: Examining PrEP.Bridget Haire, Morenike Oluwatoyin Folayan, Catherine Hankins, Jeremy Sugarman, Sheena McCormack, Gita Ramjee & Mitchell Warren - 2013 - Developing World Bioethics 13 (2):87-94.
    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 advent of multiple effective HIV prevention tools, discussions about the ethics and the (...)
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  26.  35
    Response to Open Peer Commentaries on “Medical and Nursing Students' Television Viewing Habits: Potential Implications for Bioethics”.Matthew Czarny, Ruth Faden, Marie Nolan, Edwin Bodensiek & Jeremy Sugarman - 2008 - American Journal of Bioethics 8 (12):1-1.
    Television medical dramas frequently depict the practice of medicine and bioethical issues in a strikingly realistic but sometimes inaccurate fashion. Because these shows depict medicine so vividly and are so relevant to the career interests of medical and nursing students, they may affect these students' beliefs, attitudes, and perceptions regarding the practice of medicine and bioethical issues. We conducted a web-based survey of medical and nursing students to determine the medical drama viewing habits and impressions of bioethical issues depicted in (...)
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  27.  42
    Developing ethics guidance for HIV prevention research: the HIV Prevention Trials Network approach.Stuart Rennie & Jeremy Sugarman - 2010 - Journal of Medical Ethics 36 (12):810-815.
    More than 25 years into the HIV epidemic, in excess of 2 million new infections continue to occur each year. HIV prevention research is crucial for groups at heightened risk for HIV, but the design and conduct of HIV prevention research with vulnerable populations worldwide raises considerable ethical challenges. The HIV Prevention Trials Network (HPTN) is a global collaborative network that conducts clinical and behavioural studies on non-vaccine interventions to reduce the transmission of HIV. In 2003, the HPTN developed ethical (...)
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  28.  16
    Rethinking Human Embryo Research Policies.Kirstin R. W. Matthews, Ana S. Iltis, Nuria Gallego Marquez, Daniel S. Wagner, Jason Scott Robert, Inmaculada de Melo-Martín, Marieke Bigg, Sarah Franklin, Soren Holm, Ingrid Metzler, Matteo A. Molè, Jochen Taupitz, Giuseppe Testa & Jeremy Sugarman - 2021 - Hastings Center Report 51 (1):47-51.
    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 so, how and why? What justifications would be necessary to expand the limit, particularly given that (...)
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  29.  32
    Reflections on Governance Models for the Clinical Translation of Stem Cells.Jeremy Sugarman - 2010 - Journal of Law, Medicine and Ethics 38 (2):251-256.
    Acentral promise of human embryonic stem cell research is the potential to develop viable therapeutic approaches to a range of devastating diseases and conditions. Despite excitement over such advances, there are scientific and medical reasons to be cautious as stem cells and their products are introduced into patients. In response to such concerns, the International Society for Stem Cell Research as well as ad hoc groups and individuals have offered approaches to governance of this research. While there are similarities among (...)
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  30.  21
    Conducting Empirical Research on Informed Consent: Challenges and Questions.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 - 2003 - IRB: Ethics & Human Research 25 (5):S4.
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  31.  31
    Understanding Treatment with Respect and Dignity in the Intensive Care Unit.Hanan Aboumatar, Lindsay Forbes, Emily Branyon, Joseph Carrese, Gail Geller, Mary Catherine Beach & Jeremy Sugarman - 2015 - Narrative Inquiry in Bioethics 5 (1):55-67.
    Despite wide recognition of the importance of treating patients with respect and dignity, little is known about what constitutes treatment in this regard. The intensive care unit (ICU) is a unique setting that can pose specific threats to treatment with respect and dignity owing to the critical state of patients, stress and anxiety amongst patients and their family members, and the highly technical nature of the environment. In attempt to understand various stakeholders’ perspectives of treatment with respect and dignity, patients (...)
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  32.  38
    Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit.Mary Catherine Beach, Lindsay Forbes, Emily Branyon, Hanan Aboumatar, Joseph Carrese, Jeremy Sugarman & Gail Geller - 2015 - Narrative Inquiry in Bioethics 5 (1):15-25.
    Respect and dignity are central to moral life, and have a particular importance in health care settings such as the intensive care unit (ICU). We conducted 15 semistructured interviews with 21 participants during an ICU admission to explore the definition of, and specific behaviors that demonstrate, respect and dignity during treatment in the ICU. We transcribed interviews and conducted thematic qualitative analysis. Seven themes emerged that focused on what it means to be treated with respect and/or dignity: treated as a (...)
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  33.  37
    An intervention to improve cancer patients' understanding of early-phase clinical trials.Nancy E. Kass, Jeremy Sugarman, Amy M. Medley, Linda A. Fogarty, Holly A. Taylor, Christopher K. Daugherty, Mark R. Emerson, Steven N. Goodman, Fay J. Hlubocky & Herbert I. Hurwitz - 2009 - IRB: Ethics & Human Research 31 (3):1.
    Participants in clinical research sometimes view participation as therapy or exaggerate potential benefits, especially in phase I or phase II trials. We conducted this study to discover what methods might improve cancer patients’ understanding of early-phase clinical trials. We randomly assigned 130 cancer patients from three U.S. medical centers who were considering enrollment in a phase I or phase II cancer trial to receive either a multimedia intervention or a National Cancer Institute pamphlet explaining the trial and its purpose. Intervention (...)
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  34.  39
    Implementing post-trial access plans for HIV prevention research.Amy Paul, Maria W. Merritt & Jeremy Sugarman - 2018 - Journal of Medical Ethics 44 (5):354-358.
    Ethics guidance increasingly recognises that researchers and sponsors have obligations to consider provisions for post-trial access to interventions that are found to be beneficial in research. Yet, there is little information regarding whether and how such plans can actually be implemented. Understanding practical experiences of developing and implementing these plans is critical to both optimising their implementation and informing conceptual work related to PTA. This viewpoint is informed by experiences with developing and implementing PTA plans for six large-scale multicentre HIV (...)
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  35.  22
    Allocation of Opportunities to Participate in Clinical Trials during the Covid‐19 Pandemic and Other Public Health Emergencies.Kayte Spector-Bagdady, Holly Fernandez Lynch, Barbara E. Bierer, Luke Gelinas, Sara Chandros Hull, David Magnus, Michelle N. Meyer, Richard R. Sharp, Jeremy Sugarman, Benjamin S. Wilfond, Ruqaiijah Yearby & Seema Mohapatra - 2021 - Hastings Center Report 52 (1):51-58.
    Hastings Center Report, Volume 52, Issue 1, Page 51-58, January/February 2022.
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  36.  40
    Ethical Considerations in the Manufacture, Sale, and Distribution of Genome Editing Technologies.Jeremy Sugarman, Supriya Shivakumar, Martha Rook, Jeanne F. Loring, Christoph Rehmann-Sutter, Jochen Taupitz, Jutta Reinhard-Rupp & Steven Hildemann - 2018 - American Journal of Bioethics 18 (8):3-6.
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  37.  31
    Toward Treatment With Respect and Dignity in the Intensive Care Unit.Jeremy Sugarman - 2015 - Narrative Inquiry in Bioethics 5 (1):1-4.
    Despite concern that patients in the intensive care unit (ICU) may not be treated with respect and dignity, there is not conceptual clarity regarding what constitutes such treatment. In addition, measures specific to treatment with respect and dignity in the ICU are unavailable. Accordingly, a multidisciplinary group developed a conceptual model for treatment with respect and dignity in the ICU and used mixed methods to gather data on this issue. This effort included interviews with patients and families, focus groups with (...)
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  38.  28
    Reflections on Governance Models for the Clinical Translation of Stem Cells.Jeremy Sugarman - 2010 - Journal of Law, Medicine and Ethics 38 (2):251-256.
    Governance models for the oversight of human embryonic stem cell research have been proposed which mirror in large part familiar oversight mechanisms for research with human subjects and non-human animals. While such models are in principle readily endorsable, there are a set of concerns related to their implementation — such as ensuring that an elaborated informed consent process and conducting long-term monitoring of research subjects are tenable — which suggest areas where gathering data may facilitate more appropriate oversight. In addition, (...)
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  39.  21
    Community consultation: Not the problem - an important part of the solution.Neal W. Dickert & Jeremy Sugarman - 2006 - American Journal of Bioethics 6 (3):26 – 28.
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  40.  41
    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 - 2003 - IRB: Ethics & Human Research 25 (5):s26 - 32.
  41.  50
    A Response to Commentators on “The Limitations of 'Vulnerability' as a Protection for Human Research Participants”.Carol Levine, Ruth Faden, Christine Grady, Dale Hammerschmidt, Lisa Eckenwiler & Jeremy Sugarman - 2004 - American Journal of Bioethics 4 (3):W32-W32.
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  42.  49
    Informed Consent, Shared Decision-Making, and Complementary and Alternative Medicine.Jeremy Sugarman - 2003 - Journal of Law, Medicine and Ethics 31 (2):247-250.
    Complementary and alternative medicine is used by many in hopes of achieving important health-related goals. Survey data indicate that 42 percent of the U.S. population uses CAM, accounting for 629 million “office” visits a year and expenditures of 27 billion dollars. This high prevalence of use calls for a careful evaluation of CAM so as to ensure the well-being of those using its modalities. Such an evaluation would obviously include assessments of the safety and efficacy of particular approaches, the training (...)
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  43.  36
    Informed Consent, Shared Decision-Making, and Complementary and Alternative Medicine.Jeremy Sugarman - 2003 - Journal of Law, Medicine and Ethics 31 (2):247-250.
    Complementary and alternative medicine is used by many in hopes of achieving important health-related goals. Survey data indicate that 42 percent of the U.S. population uses CAM, accounting for 629 million “office” visits a year and expenditures of 27 billion dollars. This high prevalence of use calls for a careful evaluation of CAM so as to ensure the well-being of those using its modalities. Such an evaluation would obviously include assessments of the safety and efficacy of particular approaches, the training (...)
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  44.  29
    Health Care Professionals’ Perceptions and Experiences of Respect and Dignity in the Intensive Care Unit.Gail Geller, Emily Branyon, Lindsay Forbes, Cynda H. Rushton, Mary Catherine Beach, Joseph Carrese, Hanan Aboumatar & Jeremy Sugarman - 2015 - Narrative Inquiry in Bioethics 5 (1):27-42.
    Little is known about health care professionals’ perceptions regarding what it means to treat patients and families with respect and dignity in the intensive care unit (ICU) setting. To address this gap, we conducted nine focus groups with different types of health care professionals (attending physicians, residents/fellows, nurses, social workers, pastoral care, etc.) working in either a medical or surgical ICU within the same academic health system. We identified three major thematic domains, namely, intrapersonal (attitudes and beliefs), interpersonal (behaviors), and (...)
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  45.  44
    AJOB Empirical Bioethics: A Home for Empirical Bioethics Scholarship.Chris Feudtner, Jeremy Sugarman, Barbara A. Koenig, Peter A. Ubel, Richard F. Ittenbach, Laura Weiss Roberts & Laurence B. McCullough - 2014 - AJOB Empirical Bioethics 5 (1):1-2.
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  46.  35
    Are Research Subjects Adequately Protected? A Review and Discussion of Studies Conducted by the Advisory Committee on Human Radiation Experiments.Jeremy Sugarman & Nancy E. Kass - 1996 - Kennedy Institute of Ethics Journal 6 (3):271-282.
    : In light of information uncovered about human radiation experiments conducted during the Cold War, an important charge for the Advisory Committee on Human Radiation Experiments was to assess the current state of protections for human research subjects. This assessment was designed to enhance the Committee's ability to make informed recommendations for the improvement of future policies and practices for the protection of research subjects. The Committee's examination of current protections revealed great improvement over those from the past, yet some (...)
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  47.  42
    Policy recommendations for addressing privacy challenges associated with cell-based research and interventions.Ubaka Ogbogu, Sarah Burningham, Adam Ollenberger, Kathryn Calder, Li Du, Khaled El Emam, Robyn Hyde-Lay, Rosario Isasi, Yann Joly, Ian Kerr, Bradley Malin, Michael McDonald, Steven Penney, Gayle Piat, Denis-Claude Roy, Jeremy Sugarman, Suzanne Vercauteren, Griet Verhenneman, Lori West & Timothy Caulfield - 2014 - BMC Medical Ethics 15 (1):7.
    The increased use of human biological material for cell-based research and clinical interventions poses risks to the privacy of patients and donors, including the possibility of re-identification of individuals from anonymized cell lines and associated genetic data. These risks will increase as technologies and databases used for re-identification become affordable and more sophisticated. Policies that require ongoing linkage of cell lines to donors’ clinical information for research and regulatory purposes, and existing practices that limit research participants’ ability to control what (...)
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  48.  37
    Reviewing HIV‐Related Research in Emerging Economies: The Role of Government Reviewing Agencies.Patrina Sexton, Katrina Hui, Donna Hanrahan, Mark Barnes, Jeremy Sugarman, Alex John London & Robert Klitzman - 2014 - Developing World Bioethics 16 (1):4-14.
    Little research has explored the possible effects of government institutions in emerging economies on ethical reviews of multinational research. We conducted semi-structured, in-depth telephone interviews with 15 researchers, Research Ethics Committees personnel, and a government agency member involved in multinational HIV Prevention Trials Network research in emerging economies. Ministries of Health or other government agencies often play pivotal roles as facilitators or barriers in the research ethics approval process. Government agency RECs reviewing protocols may face particular challenges, as they can (...)
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  49.  22
    Ethical Oversight of Multinational Collaborative Research: Lessons from Africa for Building Capacity and for Policy.Jeremy Sugarman - 2007 - Research Ethics 3 (3):84-86.
    Researchers and others involved in the research enterprise from 12 African countries met with those working in ethics and oversight in the United States as part of an effort to develop research ethics capacity. Drawing on a wealth of experience among participants, discussions at the meeting revealed five categories of issues that warrant careful attention by those engaged in similar efforts as well as international policymakers and those charged with oversight of research. Principal investigators should build ‘true research teams’ where (...)
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  50.  43
    Bringing science and advocacy together to address health needs of people who inject drugs.Liza Dawson, Steffanie A. Strathdee, Alex John London, Kathryn E. Lancaster, Robert Klitzman, Irving Hoffman, Scott Rose & Jeremy Sugarman - 2018 - Journal of Medical Ethics 44 (3):165-166.
    In crafting our paper on addressing the ethical challenges in HIV prevention research with people who inject drugs,1 we had hoped to stimulate further discussion and deliberation about the topic. We are pleased that three commentaries on our paper have begun this process.2 3 4 The commentaries rightly bring up important issues relating to community engagement and problems in translating research into practice in the fraught environments in which PWID face multiple risks. These risks include acquisition of HIV as well (...)
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