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Nancy E. Kass [39]Nancy Kass [25]
  1.  46
    An Ethics Framework for a Learning Health Care System: A Departure From Traditional Research Ethics and Clinical Ethics.Ruth R. Faden, Nancy E. Kass, Steven N. Goodman, Peter Pronovost, Sean Tunis & Tom L. Beauchamp - 2013 - Hastings Center Report 43 (s1):16-27.
  2.  88
    Public Health Ethics: Mapping the Terrain.James F. Childress, Ruth R. Faden, Ruth D. Gaare, Lawrence O. Gostin, Jeffrey Kahn, Richard J. Bonnie, Nancy E. Kass, Anna C. Mastroianni, Jonathan D. Moreno & Phillip Nieburg - 2002 - Journal of Law, Medicine and Ethics 30 (2):170-178.
    Public health ethics, like the field of public health it addresses, traditionally has focused more on practice and particular cases than on theory, with the result that some concepts, methods, and boundaries remain largely undefined. This paper attempts to provide a rough conceptual map of the terrain of public health ethics. We begin by briefly defining public health and identifying general features of the field that are particularly relevant for a discussion of public health ethics.Public health is primarily concerned with (...)
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  3.  37
    The Research‐Treatment Distinction: A Problematic Approach for Determining Which Activities Should Have Ethical Oversight.Nancy E. Kass, Ruth R. Faden, Steven N. Goodman, Peter Pronovost, Sean Tunis & Tom L. Beauchamp - 2013 - Hastings Center Report 43 (s1):4-15.
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  4.  49
    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.
  5.  82
    Outcome of a Research Ethics Training Workshop Among Clinicians and Scientists in a Nigerian University.Ademola J. Ajuwon & Nancy Kass - 2008 - BMC Medical Ethics 9 (1):1.
    In Nigeria, as in other developing countries, access to training in research ethics is limited, due to weak social, economic, and health infrastructure. The project described in this article was designed to develop the capacity of academic staff of the College of Medicine, University of Ibadan, Nigeria to conduct ethically acceptable research involving human participants.
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  6.  49
    The Value of Unhealthy Eating and the Ethics of Healthy Eating Policies.Anne Barnhill, Katherine F. King, Nancy Kass & Ruth Faden - 2014 - Kennedy Institute of Ethics Journal 24 (3):187-217.
    As concerns about the negative health effects of unhealthy eating, overweight and obesity have increased, so too have policy efforts to promote healthy eating. Federal, state, and local governments have proposed and implemented a variety of healthy eating policies. Many of these policies are controversial, facing objections that range from the practical (e.g., the policy won’t succeed at improving people’s diets) to the ethical (e.g., the policy is paternalistic or inequitable). Especially controversial have been policies limiting the options offered in (...)
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  7.  60
    Public Health Ethics From Foundations and Frameworks to Justice and Global Public Health.Nancy E. Kass - 2004 - Journal of Law, Medicine and Ethics 32 (2):232-242.
    Public health ethics in the future will be distinguished from public health ethics in the past by this new subfield being labeled as such, acknowledged, and called upon for service. Ethical dilemmas have been present throughout the history of public health. The question of whether to force Henning Jacobson to be immunized in 1905 in accordance with the 1902 Massachusetts smallpox vaccination law was one of ethics as well as law. How Thomas Parran, Surgeon General in 1936, chose to respond (...)
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  8.  26
    How Are PCORI-Funded Researchers Engaging Patients in Research and What Are the Ethical Implications?Lauren E. Ellis & Nancy E. Kass - 2017 - Ajob Empirical Bioethics 8 (1):1-10.
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  9. Evaluating Institutional Capacity for Research Ethics in Africa: A Case Study From Botswana. [REVIEW]Adnan A. Hyder, Waleed Zafar, Joseph Ali, Robert Ssekubugu, Paul Ndebele & Nancy Kass - 2013 - BMC Medical Ethics 14 (1):31.
    The increase in the volume of research conducted in Low and Middle Income Countries (LMIC), has brought a renewed international focus on processes for ethical conduct of research. Several programs have been initiated to strengthen the capacity for research ethics in LMIC. However, most such programs focus on individual training or development of ethics review committees. The objective of this paper is to present an approach to institutional capacity assessment in research ethics and application of this approach in the form (...)
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  10.  15
    Alternative Consent Models for Comparative Effectiveness Studies: Views of Patients From Two Institutions.Nancy Kass, Ruth Faden, Rachel E. Fabi, Stephanie Morain, Kristina Hallez, Danielle Whicher, Sean Tunis, Rachael Moloney, Donna Messner & James Pitcavage - 2016 - Ajob Empirical Bioethics 7 (2):92-105.
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  11.  32
    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.
  12.  24
    Screening in the Dark: Ethical Considerations of Providing Screening Tests to Individuals When Evidence is Insufficient to Support Screening Populations.Ingrid Burger & Nancy Kass - 2009 - American Journal of Bioethics 9 (4):3-14.
    During the past decade, screening tests using computed tomography have disseminated into practice and been marketed to patients despite neither conclusive evidence nor professional agreement about their efficacy and cost-effectiveness at the population level. This phenomenon raises questions about physicians' professional roles and responsibilities within the setting of medical innovation, as well as the appropriate scope of patient autonomy and access to unproven screening technology. This article explores how physicians ought to respond when new screening examinations that lack conclusive evidence (...)
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  13.  9
    Motivations, Understanding, and Voluntariness in International Randomized Trials.Nancy E. Kass, Suzanne Maman & Joan Atkinson - 2005 - IRB: Ethics & Human Research 27 (6):1.
  14.  14
    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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  15.  30
    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.
  16.  30
    Development of a Research Ethics Knowledge and Analytical Skills Assessment Tool.Holly A. Taylor, Nancy E. Kass, Joseph Ali, Stephen Sisson, Amanda Bertram & Anant Bhan - 2012 - Journal of Medical Ethics 38 (4):236-242.
    Introduction The goal of this project was to develop and validate a new tool to evaluate learners' knowledge and skills related to research ethics. Methods A core set of 50 questions from existing computer-based online teaching modules were identified, refined and supplemented to create a set of 74 multiple-choice, true/false and short answer questions. The questions were pilot-tested and item discrimination was calculated for each question. Poorly performing items were eliminated or refined. Two comparable assessment tools were created. These assessment (...)
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  17.  31
    Post-Consent Assessment of Dental Subjects' Understanding of Informed Consent in Oral Health Research in Nigeria.Olaniyi O. Taiwo & Nancy Kass - 2009 - BMC Medical Ethics 10 (1):11.
    Research participants may not adequately understand the research in which they agree to enroll. This could be due to a myriad of factors. Such a missing link in the informed consent process contravenes the requirement for an.
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  18.  72
    Research Ethics Capacity Development in Africa: Exploring a Model for Individual Success.A. L. I. Joseph, Adnan A. Hyder & Nancy E. Kass - 2012 - Developing World Bioethics 12 (2):55-62.
    The Johns Hopkins-Fogarty African Bioethics Training Program (FABTP) has offered a fully-funded, one-year, non-degree training opportunity in research ethics to health professionals, ethics committee members, scholars, journalists and scientists from countries across sub-Saharan Africa. In the first 9 years of operation, 28 trainees from 13 African countries have trained with FABTP. Any capacity building investment requires periodic critical evaluation of the impact that training dollars produce. In this paper we describe and evaluate FABTP and the efforts of its trainees.Our data (...)
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  19.  31
    Research Ethics Capacity Development in Africa: Exploring a Model for Individual Success.Joseph Ali, Adnan A. Hyder & Nancy E. Kass - 2012 - Developing World Bioethics 12 (2):55-62.
    We describe and evaluate FABTP and the efforts of its trainees. Our data show that since 2001, the 28 former FABTP trainees have auth.
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  20.  22
    The Use of Medical Records in Research: What Do Patients Want?Nancy E. Kass, Marvin R. Natowicz, Sara Chandros Hull, Ruth R. Faden, Laura Plantinga, Lawrence O. Gostin & Julia Slutsman - 2003 - Journal of Law, Medicine and Ethics 31 (3):429-433.
    In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...)
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  21.  12
    The Use of Medical Records in Research: What Do Patients Want?Nancy E. Kass, Marvin R. Natowicz, Sara Chandros Hull, Ruth R. Faden, Laura Plantinga, Lawrence O. Gostin & Julia Slutsman - 2003 - Journal of Law, Medicine and Ethics 31 (3):429-433.
    In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...)
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  22.  39
    Participants' Perceptions of Research Benefits in an African Genetic Epidemiology Study.John Appiah-Poku, Sam Newton & Nancy Kass - 2011 - Developing World Bioethics 11 (3):128-135.
    Background: Both the Council for International Organization of Medical Sciences and the Helsinki Declaration emphasize that the potential benefits of research should outweigh potential harms; consequently, some work has been conducted on participants' perception of benefits in therapeutic research. However, there appears to be very little work conducted with participants who have joined non-therapeutic research. This work was done to evaluate participants' perception of benefits in a genetic epidemiological study by examining their perception of the potential benefits of enrollment.Methods: In-depth (...)
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  23.  20
    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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  24.  40
    Exploring Institutional Research Ethics Systems: A Case Study From Uganda.Adnan A. Hyder, Joseph Ali, Kristina Hallez, Tara White, Nelson K. Sewankambo & Nancy E. Kass - 2015 - Ajob Empirical Bioethics 6 (3):1-14.
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  25.  38
    Improving Informed Consent: The Medium Is Not the Message.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 - 2003 - IRB: Ethics & Human Research 25 (5):S11.
  26.  30
    Learning Health Care Systems and Justice.Ruth R. Faden, Tom L. Beauchamp & Nancy E. Kass - 2011 - Hastings Center Report 41 (4):3-3.
    Response to Emily A. Largent, Franklin G. Miller and Steven Joffe, A Prescription for Ethical Learning, Hastings Center Report, 43, s1, (S28-S29), (2013).
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  27.  18
    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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  28.  14
    Insurance for the Insurers The Use of Genetic Tests.Nancy E. Kass - 1992 - Hastings Center Report 22 (6):6-11.
  29.  5
    Stakeholders' Views of Alternatives to Prospective Informed Consent for Minimal‐Risk Pragmatic Comparative Effectiveness Trials.Danielle Whicher, Nancy Kass & Ruth Faden - 2015 - Journal of Law, Medicine and Ethics 43 (2):397-409.
    As interest in comparative effectiveness research grows, questions have emerged regarding whether it is ever acceptable to alter informed consent requirements for research when patients are randomly assigned to widely-used therapies. This paper reports on interviews with Institutional Review Board members and researchers and on focus groups with patients from Geisinger and Johns Hopkins health systems. The objective was to elicit participants' views of the acceptability of four different disclosure and authorization models for low-risk pragmatic comparative effectiveness trials of widely-used (...)
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  30.  10
    On the Importance of Research Ethics and Mentoring.Ruth R. Faden, Michael J. Klag, Nancy E. Kass & Sharon S. Krag - 2002 - American Journal of Bioethics 2 (4):50 – 51.
  31.  23
    Decision-Making and Motivation to Participate in Biomedical Research in Southwest Nigeria.Pauline E. Osamor & Nancy Kass - 2012 - Developing World Bioethics 12 (2):87-95.
    Motivations and decision-making styles that influence participation in biomedical research vary across study types, cultures, and countries. While there is a small amount of literature on informed consent in non-western cultures, few studies have examined how participants make the decision to join research. This study was designed to identify the factors motivating people to participate in biomedical research in a traditional Nigerian community, assess the degree to which participants involve others in the decision-making process, and examine issues of autonomy in (...)
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  32.  28
    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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  33. Just Research in an Unjust World : Can Harm Reduction Be an Acceptable Tool for Public Health Prevention Research?Nancy E. Kass - 2008 - In Ronald Michael Green, Aine Donovan & Steven A. Jauss (eds.), Global Bioethics: Issues of Conscience for the Twenty-First Century. Oxford University Press.
     
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  34.  19
    Assessment of the Ethical Review Process in Sudan.Dya Eldin M. Elsayed & Nancy E. Kass - 2007 - Developing World Bioethics 7 (3):143–148.
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  35.  47
    Harms of Excluding Pregnant Women From Clinical Research: The Case of HIV-Infected Pregnant Women.Nancy E. Kass, Holly A. Taylor & Patricia A. King - 1996 - Journal of Law, Medicine and Ethics 24 (1):36-46.
    Since the beginning of the AIDS epidemic, the proportion of AIDS cases among women has continued to rise. Women constituted 23 percent of the AIDS cases reported to the Centers for Disease Control and Prevention in 1995, and 81 percent of these women were of childbearing age. It was not until 1991, however, that epidemiological studies of women were initiated. By comparison, the representation of HIV-infected women in clinical trials gradually has grown. Undoubtedly, a consequence of the increased numbers of (...)
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  36.  16
    Access to Treatment in Hiv Prevention Trials: Perspectives From a South African Community.Nicola Barsdorf, Suzanne Maman, Nancy Kass & Catherine Slack - 2010 - Developing World Bioethics 10 (2):78-87.
    Access to treatment, in HIV vaccine trials (HVTs), remains ethically controversial. 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 (...)
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  37.  12
    Harms of Excluding Pregnant Women From Clinical Research: The Case of HIV-Infected Pregnant Women.Nancy E. Kass, Holly A. Taylor & Patricia A. King - 1996 - Journal of Law, Medicine and Ethics 24 (1):36-46.
    Since the beginning of the AIDS epidemic, the proportion of AIDS cases among women has continued to rise. Women constituted 23 percent of the AIDS cases reported to the Centers for Disease Control and Prevention in 1995, and 81 percent of these women were of childbearing age. It was not until 1991, however, that epidemiological studies of women were initiated. By comparison, the representation of HIV-infected women in clinical trials gradually has grown. Undoubtedly, a consequence of the increased numbers of (...)
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  38.  21
    Assessing the Readability of Non-English-Language Consent Forms: The Case of Kiswahili for Research Conducted in Kenya.Caroline Kithinji & Nancy E. Kass - 2010 - IRB: Ethics & Human Research 32 (4):10.
    A large body of literature supports the notion that the language used in informed consent forms is not comprehensible to most research participants. Creating comprehensible informed consent forms for international research presents a further challenge because they are generally written first in English and then translated into the local language. The Kenya Medical Research National Ethical Review Committee determines readability of English consent forms before translation; however, it is neither their policy nor practice to determine whether the forms, once translated (...)
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  39.  14
    Genetic Screening and Disability Insurance: What Can We Learn From The Health Insurance Experience?Nancy Kass & Amy Medley - 2007 - Journal of Law, Medicine and Ethics 35 (s2):66-73.
    Genetic information may be used by health and disability insurance companies to deny or restrict coverage. How health insurance companies use genetic information, and how public policy has limited that use, can be illustrative for genetics and disability insurance policy.
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  40.  5
    Genetic Screening and Disability Insurance: What Can We Learn From the Health Insurance Experience?Nancy Kass & Amy Medley - 2007 - Journal of Law, Medicine and Ethics 35 (S2):66-73.
    The Human Genome Project has allowed researchers to gain new insights into the genetic causes of health and disease. With this knowledge comes the potential to develop new genetic tests that are capable of predicting the risk of disease or disability among presently healthy individuals. This information is potentially beneficial in that it may allow individuals to develop strategies to reduce their risk of illness and may allow health providers to recognize and treat the early stages of disease more effectively. (...)
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  41.  10
    Response to Open Peer Commentaries for “Ethical Considerations of Providing Screening Tests to Individuals When Evidence is Insufficient to Support Screening Populations”.Ingrid M. Burger & Nancy E. Kass - 2009 - American Journal of Bioethics 9 (4):1-2.
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  42.  4
    Assessing Training Needs in Health Research Ethics: A Case Study From the University of Zambia School of Medicine.Gershom Chongwe, Bornwell Sikateyo, Linda Kampata, Joseph Ali, Kristina Hallez, Adnan A. Hyder, Nancy Kass & Charles Michelo - 2020 - Global Bioethics 31 (1):155-163.
    In many settings, and perhaps especially in low-middle income countries, training institutions do not adequately prepare their students for the ethical challenges that confront them in professional life. We conducted a survey to assess the training needs in research ethics among the faculty at the University of Zambia, School of Medicine using a structured questionnaire distributed to faculty members in January 2015. The study was approved by the University of Zambia Biomedical Research Ethics Committee. Seventy-five faculty members of various ranks (...)
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  43. Toward a More Comprehensive Approach to Protecting Human Subjects: The Interface of Data Safety Monitoring Boards and Institutional Review Boards in Randomized Clinical Trials.Valery M. Gordon, Jeremy Sugarman & Nancy Kass - 1998 - IRB: Ethics & Human Research 20 (1):1.
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  44.  24
    Improving Institutional Research Ethics Capacity Assessments: Lessons From Sub-Saharan Africa.Molly Deutsch-Feldman, Joseph Ali, Nancy Kass, Nthabiseng Phaladze, Charles Michelo, Nelson Sewankambo & Adnan A. Hyder - 2018 - Tandf: Global Bioethics:1-13.
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  45.  1
    Improving Institutional Research Ethics Capacity Assessments: Lessons From Sub-Saharan Africa.Molly Deutsch-Feldman, Joseph Ali, Nancy Kass, Nthabiseng Phaladze, Charles Michelo, Nelson Sewankambo & Adnan A. Hyder - 2018 - Global Bioethics:1-13.
    The amount of biomedical research being conducted around the world has greatly expanded over the past 15 years, with particularly large growth occurring in low- and middle-income countries. This increased focus on understanding and responding to disease burdens around the world has brought forth a desire to help LMIC institutions enhance their own capacity to conduct scientifically and ethically sound research. In support of these goals the Johns Hopkins-Fogarty African Bioethics Training Program has, for the past six years, partnered with (...)
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  46.  30
    Toward a More Comprehensive Approach to Protecting Human Subjects: The Interface of Data Safety Monitoring Boards and Institutional Review Boards in Randomized Clinical Trials.Valery M. Gordon, Jeremy Sugarman & Nancy Kass - 1998 - IRB: Ethics & Human Research 20 (1):1.
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  47.  3
    Ethical Challenges in Research on Post-Abortion Care with Adolescents: Experiences of Researchers in Zambia.Adnan A. Hyder, Charles Michelo, Nancy E. Kass, Kristina Hallez, Joseph Ali & Joseph M. Zulu - 2020 - Global Bioethics 31 (1):104-119.
    ABSTRACT Post-abortion care research is increasingly being conducted in low- and middle-income countries to help reduce the high burden of unsafe abortion. This study aims to help address the evidence gap about ethical challenges that researchers in LMICs face when carrying out PAC research with adolescents. Employing an explorative qualitative approach, the study identified several ethics challenges encountered by PAC researchers in Zambia, including those associated with seeking ethics and regulatory approvals at institutional and national levels. Persistent stigma around abortion (...)
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  48.  4
    Improving Institutional Research Ethics Capacity Assessments: Lessons From Sub-Saharan Africa.Adnan A. Hyder, Nelson Sewankambo, Charles Michelo, Nthabiseng Phaladze, Nancy Kass, Joseph Ali & Molly Deutsch-Feldman - 2020 - Global Bioethics 31 (1):120-132.
    ABSTRACT The amount of biomedical research being conducted around the world has greatly expanded over the past 15 years, with particularly large growth occurring in low- and middle-income countries. This increased focus on understanding and responding to disease burdens around the world has brought forth a desire to help LMIC institutions enhance their own capacity to conduct scientifically and ethically sound research. In support of these goals the Johns Hopkins-Fogarty African Bioethics Training Program has, for the past six years, partnered (...)
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  49. Contemporary Biomedical Research.Nancy E. Kass - forthcoming - Hastings Center Report.
     
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  50. Ethical Oversight of Research in Developing Countries.Nancy Kass, Liza Dawson & Nilsa I. Loyo-Berrios - 2003 - IRB: Ethics & Human Research 25 (2):1.
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