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Sarah J. L. Edwards [33]Sarah Jl Edwards [11]Sarah Edwards [6]Sarah Jane Edwards [1]
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  1.  19
    Ethics of Clinical Science in a Public Health Emergency: Drug Discovery at the Bedside.Sarah Jl Edwards - 2013 - American Journal of Bioethics 13 (9):3-14.
    Clinical research under the usual regulatory constraints may be difficult or even impossible in a public health emergency. Regulators must seek to strike a good balance in granting as wide therapeutic access to new drugs as possible at the same time as gathering sound evidence of safety and effectiveness. To inform current policy, I reexamine the philosophical rationale for restricting new medicines to clinical trials, at any stage and for any population of patients (which resides in the precautionary principle), to (...)
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  2. Research led by participants: a new social contract for a new kind of research.Effy Vayena, Roger Brownsword, Sarah Jane Edwards, Bastian Greshake, Jeffrey P. Kahn, Navjoyt Ladher, Jonathan Montgomery, Daniel O'Connor, Onora O'Neill, Martin P. Richards, Annette Rid, Mark Sheehan, Paul Wicks & John Tasioulas - 2016 - Journal of Medical Ethics 42 (4):216-219.
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  3.  41
    A Radical Approach to Ebola: Saving Humans and Other Animals.Sarah J. L. Edwards, Charles H. Norell, Phyllis Illari, Brendan Clarke & Carolyn P. Neuhaus - 2018 - American Journal of Bioethics 18 (10):35-42.
    As the usual regulatory framework did not fit well during the last Ebola outbreak, innovative thinking still needed. In the absence of an outbreak, randomised controlled trials of clinical efficacy in humans cannot be done, while during an outbreak such trials will continue to face significant practical, philosophical, and ethical challenges. This article argues that researchers should also test the safety and effectiveness of novel vaccines in wild apes by employing a pluralistic approach to evidence. There are three reasons to (...)
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  4.  27
    Assessing the Remedy: The Case for Contracts in Clinical Trials.Sarah J. L. Edwards - 2011 - American Journal of Bioethics 11 (4):3-12.
    Current orthodoxy in research ethics assumes that subjects of clinical trials reserve rights to withdraw at any time and without giving any reason. This view sees the right to withdraw as a simple extension of the right to refuse to participate all together. In this paper, however, I suggest that subjects should assume some responsibilities for the internal validity of the trial at consent and that these responsibilities should be captured by contract. This would allow the researcher to impose a (...)
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  5.  30
    Research ethics committees: Differences and moral judgement.Sarah J. L. Edwards, Richard Ashcroft & Simon Kirchin - 2004 - Bioethics 18 (5):408–427.
    ABSTRACT Many people argue that disagreements and inconsistencies between Research Ethics Committees are morally problematic and there has been much effort to ‘harmonise’ their judgements. Some inconsistencies are bad because they are due to irrationality, or carelessness, or the operation of conflicting interests, and so should be reduced or removed. Other inconsistencies, we argue, are not bad and should be left or even encouraged. In this paper we examine three arguments to reject the view that we should strive for complete (...)
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  6.  40
    Research participation and the right to withdraw.Sarah J. L. Edwards - 2005 - Bioethics 19 (2):112–130.
    Most ethics committees which review research protocols insist that potential research participants reserve unconditional or absolute ‘right’ of withdrawal at any time and without giving any reason. In this paper, I examine what consent means for research participation and a sense of commitment in relation to this right to withdraw. I suggest that, once consent has been given (and here I am excluding incompetent minors and adults), participants should not necessarily have unconditional or absolute rights to withdraw.This does not imply (...)
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  7.  29
    Restricted treatments, inducements, and research participation.Sarah J. L. Edwards - 2006 - Bioethics 20 (2):77–91.
    ABSTRACT In this paper, I support the claim that placing certain restrictions on public access to possible new treatments is morally problematic under some exceptional circumstances. Very ill patients may find that all available standard treatments are unacceptable, either because they are ineffective or have serious adverse effects, and these patients may understandably be desperate to try something new even if this means stepping into the unknown. Faced with certain death, it is rational to want to try something new and (...)
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  8.  14
    Governing taste: data, temporality and everyday kiwifruit dry matter performances.Matthew Henry, Christopher Rosin & Sarah Edwards - 2022 - Agriculture and Human Values 40 (2):519-531.
    Data is essential to governing those emerging matters of concern that confront the agrifood every day. But data is no neutral intermediary. It disrupts, exposes, and creates new social, economic, political, and environmental possibilities, whilst simultaneously hiding, excluding, and foreclosing others. Scholars have become attuned to both the constitutive role of data in creating everyday worlds, and the need to develop critical accounts of the materialities, spatialities and multiplicities of data relationships. Whereas this emerging work develops insight to the capacity (...)
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  9.  25
    Evaluating Interventions in Health: A Reconciliatory Approach.Jonathan Wolff, Sarah Edwards, Sarah Richmond, Shepley Orr & Geraint Rees - 2012 - Bioethics 26 (9):455-463.
    Health‐related Quality of Life measures have recently been attacked from two directions, both of which criticize the preference‐based method of evaluating health states they typically incorporate. One attack, based on work by Daniel Kahneman and others, argues that ‘experience’ is a better basis for evaluation. The other, inspired by Amartya Sen, argues that ‘capability’ should be the guiding concept. In addition, opinion differs as to whether health evaluation measures are best derived from consultations with the general public, with patients, or (...)
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  10.  19
    Inequalities and Fairness in Cluster Trials.Erin Conrad & Sarah Jl Edwards - 2011 - Research Ethics 7 (2):58-65.
    Cluster randomized controlled trials (cluster RCTs) randomize whole clusters of individuals in testing two or more competing interventions. Here we will present the ethical problems raised by cluster RCTs concerning their effect on inequality. We argue that some inequalities generated by cluster RCTs are larger in scope than those generated from individual RCTs. We also argue that any cluster RCT-generated inequalities, which divide groups rather than individuals, are more problematic in type than the inequalities created in individual RCTs. These concerns (...)
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  11.  62
    Evaluating interventions in health: A reconciliatory approach.Jonathan Wolff, Sarah Edwards, Sarah Richmond, O. R. R. Shepley & Geraint Rees - 2011 - Bioethics 26 (9):455-463.
    Health-related Quality of Life measures have recently been attacked from two directions, both of which criticize the preference-based method of evaluating health states they typically incorporate. One attack, based on work by Daniel Kahneman and others, argues that ‘experience’ is a better basis for evaluation. The other, inspired by Amartya Sen, argues that ‘capability’ should be the guiding concept. In addition, opinion differs as to whether health evaluation measures are best derived from consultations with the general public, with patients, or (...)
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  12.  20
    The Role, Remit and Function of the Research Ethics Committee — 1. The Rationale for Ethics Review of Research by Committee.Sarah J. L. Edwards - 2009 - Research Ethics 5 (4):147-150.
    This is the first in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. The first considers the rationale for having ethics review by committee at all; seeking to explain why ethics committees, as we currently have them, are so important to the wider system of governing research.
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  13.  16
    Recognising values and engaging communities across cultures: towards developing a cultural protocol for researchers.Rakhshi Memon, Muqaddas Asif, Ameer B. Khoso, Sehrish Tofique, Tayyaba Kiran, Nasim Chaudhry, Nusrat Husain & Sarah J. L. Edwards - 2021 - BMC Medical Ethics 22 (1):1-8.
    Efforts to build research capacity and capability in low and middle income countries (LMIC) has progressed over the last three decades, yet it confronts many challenges including issues with communicating or even negotiating across different cultures. Implementing global research requires a broader understanding of community engagement and participatory research approaches. There is a considerable amount of guidance available on community engagement in clinical trials, especially for studies for HIV/aids, even culturally specific codes for recruiting vulnerable populations such as the San (...)
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  14.  9
    Limitations to Contingency Measures: Reflections from COVID-19 Surges in the UK.Sarah J. L. Edwards, David A. Lomas, Sarah Yardley & Caitlin Gordon - 2021 - American Journal of Bioethics 21 (8):31-34.
    Alfandre et al. helpfully outlines the case for attending to contingency planning as well as to crisis measures during a pandemic. The authors provides a helpful framework for reflecting on...
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  15.  29
    The Role, Remit and Function of the Research Ethics Committee — 3. Balancing Potential Social Benefits against Risks to Subjects.Sarah J. L. Edwards - 2010 - Research Ethics 6 (3):96-100.
    This is the third in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. This paper examines the role of ethics committees in balancing the social value of the research it reviews against the risks it imposes on those who take part. The ethics committee's role in assessing the social value of research goes (...)
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  16.  95
    Hard paternalism, fairness and clinical research: why not?Sarah J. L. Edwards & James Wilson - 2010 - Bioethics 26 (2):68 - 75.
    Jansen and Wall suggest a new way of defending hard paternalism in clinical research. They argue that non-therapeutic research exposing people to more than minimal risk should be banned on egalitarian grounds: in preventing poor decision-makers from making bad decisions, we will promote equality of welfare. We argue that their proposal is flawed for four reasons.First, the idea of poor decision-makers is much more problematic than Jansen and Wall allow. Second, pace Jansen and Wall, it may be practicable for regulators (...)
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  17.  19
    Response to Open Peer Commentaries on “Ethics of Clinical Science in a Public Health Emergency: Drug Discovery at the Bedside”.Sarah Jl Edwards - 2013 - American Journal of Bioethics 13 (9):W1-W3.
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  18.  30
    Evidence of Efficacy and Human Right to Health.Sarah J. L. Edwards, Sapfo Lignou & Elizabeth Oduwo - 2012 - American Journal of Bioethics 12 (6):35-37.
    The American Journal of Bioethics, Volume 12, Issue 6, Page 35-37, June 2012.
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  19.  16
    Protecting privacy interests in brain images : the limits of consent.Sarah J. L. Edwards - 2012 - In Sarah Richmond, Geraint Rees & Sarah J. L. Edwards (eds.), I know what you're thinking: brain imaging and mental privacy. Oxford: Oxford University Press.
  20.  23
    The Case for Methodological Pluralism in Medical Science.Sarah J. L. Edwards, Thomas Bock, Ulo Palm, Sally Wang, Glen Cheng, Lixia Wang & Peter Pitts - 2020 - American Journal of Bioethics 20 (9):39-41.
    Volume 20, Issue 9, September 2020, Page 39-41.
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  21.  34
    Manipulation of information in medical research: Can it be morally justified?Sapfo Lignou & Sarah Jl Edwards - 2012 - Research Ethics 8 (1):9-23.
    The aim of this article is to examine whether informational manipulation, used intentionally by the researcher to increase recruitment in the research study, can be morally acceptable. We argue that this question is better answered by following a non-normative account, according to which the ethical justifiability of informational manipulation should not be relevant to its definition. The most appropriate criterion by which informational manipulation should be considered as morally acceptable or not is the researcher’s special moral duties towards their subjects. (...)
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  22.  45
    I know what you're thinking: brain imaging and mental privacy.Sarah Richmond, Geraint Rees & Sarah J. L. Edwards (eds.) - 2012 - Oxford: Oxford University Press.
    'I know what you're thinking' is a fascinating exploration into the neuroscientific evidence on 'mind reading'.
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  23.  25
    Response to Open Peer Commentaries on “Assessing the Remedy: The Case for Contracts in Clinical Trials”.Sarah J. L. Edwards - 2011 - American Journal of Bioethics 11 (4):W1-W3.
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  24.  23
    The Role, Remit and Function of the Research Ethics Committee — 4. Limits to Consent?Sarah J. L. Edwards - 2010 - Research Ethics 6 (4):159-163.
    This is the fourth in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. This paper explores the role of ethics committees in reviewing proposed conditions for recruiting human subjects and in checking the intended procedures for gaining consent. In so doing the paper will reiterate the conditions which are traditionally thought to make (...)
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  25.  10
    The Role, Remit and Function of the Research Ethics Committee — 2. Science and Society: The Scope of Ethics Review.Sarah J. L. Edwards - 2010 - Research Ethics 6 (2):58-61.
    This is the second in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. This paper examines the role of ethics committees in assessing the science of the research it reviews. While ethics committees are not specifically constituted to review the science of a project, they must nevertheless assess the social benefits of research (...)
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  26.  12
    Editorial: The precautionary paradox and Zika.Sarah J. L. Edwards - 2016 - Research Ethics 12 (4):178-181.
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  27.  20
    The Animal Efficacy Rule and public health.Sarah J. L. Edwards - 2015 - Research Ethics 11 (2):64-66.
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  28. From research governance to research integrity: What’s in a name?Sarah J. L. Edwards - 2013 - Research Ethics 9 (1):3-5.
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  29. Consensus on the Census?Sarah Jl Edwards - 2011 - Research Ethics 7 (2):33-36.
  30. Editor's Choice: Issue 2, 2011.Sarah Jl Edwards - 2011 - Research Ethics 7 (2):37-38.
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  31. Editor’s choice.Sarah Jl Edwards - 2012 - Research Ethics 8 (1):7-8.
  32.  24
    Response to Open Peer Commentaries on “A Radical Approach to Ebola: Saving Humans and Other Animals”.Carolyn P. Neuhaus, Brendan Clarke, Phyllis Illari, Charles H. Norell & Sarah J. L. Edwards - 2019 - American Journal of Bioethics 19 (1):W8-W9.
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  33.  34
    The Ottawa statement on the ethical design and conduct of cluster randomized trials: A short report.Charles Weijer, Monica Taljaard, Jeremy M. Grimshaw, Sarah Jl Edwards & Martin P. Eccles - 2014 - Research Ethics 10 (2):77-85.
    Owing to unique features of their design, cluster randomized trials complicate the interpretation of standard ethics guidelines. The recently published Ottawa statement on the ethical design and conduct of cluster randomized trials provides researchers and research ethics committees with detailed guidance on the design, conduct and review of cluster trials. The Ottawa statement sets out 15 recommendations, including guidance on the justification of study design, the need for research ethics committee review, the identification of research participants, obtaining informed consent, the (...)
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  34.  16
    The Ottawa statement on the ethical design and conduct of cluster randomized trials: A short report.Charles Weijer, Monica Taljaard, Jeremy M. Grimshaw, Sarah J. L. Edwards & Martin P. Eccles - 2015 - Research Ethics 11 (1):52-60.
    Owing to unique features of their design, cluster randomized trials complicate the interpretation of standard ethics guidelines. The recently published Ottawa statement on the ethical design and conduct of cluster randomized trials provides researchers and research ethics committees with detailed guidance on the design, conduct, and review of cluster trials. The Ottawa statement sets out 15 recommendations, including guidance on the justification of study design, the need for research ethics committee review, the identification of research participants, obtaining informed consent, the (...)
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  35.  8
    An ethics of anthropology‐informed community engagement with COVID‐19 clinical trials in Africa.Sarah J. L. Edwards, Blessing Silaigwana, Danny Asogun, Julius Mugwagwa, Francine Ntoumi, Rashid Ansumana, Kevin Bardosh & Jennyfer Ambe - 2023 - Developing World Bioethics 23 (3):242-251.
    The COVID‐19 pandemic has reinforced the critical role of ethics and community engagement in designing and conducting clinical research during infectious disease outbreaks where no vaccine or treatment already exists. In reviewing current practices across Africa, we distinguish between three distinct roles for community engagement in clinical research that are often conflated: 1) the importance of community engagement for identifying and honouring cultural sensitivities; 2) the importance of recognising the socio‐political context in which the research is proposed; and 3) the (...)
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  36.  7
    Are we educating our research ethics committees?Sarah J. L. Edwards - 2017 - Research Ethics 13 (3-4):99-101.
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  37. Conclusion.Sarah J. L. Edwards & Geraint Rees - 2012 - In Sarah Richmond, Geraint Rees & Sarah J. L. Edwards (eds.), I know what you're thinking: brain imaging and mental privacy. Oxford: Oxford University Press.
     
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  38.  6
    Conceptions and misconceptions of therapeutic benefit.Sarah J. L. Edwards - 2016 - Research Ethics 12 (2):64-67.
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  39.  4
    Cultural conceptions of mental capacity.Sarah J. L. Edwards - 2017 - Research Ethics 13 (2):54-58.
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  40.  6
    Clinical evidence in the regulation of medical devices.Sarah J. L. Edwards - 2016 - Research Ethics 12 (3):120-122.
  41.  9
    Editor's Choice: Issue 2, 2011.Sarah J. L. Edwards - 2011 - Research Ethics 7 (2):37-38.
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  42.  4
    Editorial: Continuous consent to, or discreet control over, sharing digital data?Sarah J. L. Edwards - 2014 - Research Ethics 10 (4):184-186.
  43.  24
    Editorial: Do mechanistic studies have more to prove than positive results?Sarah Jl Edwards - 2012 - Research Ethics 8 (4):187-190.
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  44.  74
    Editorial: Tamiflu and the open data campaign.Sarah Jl Edwards - 2013 - Research Ethics 9 (3):94-96.
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  45.  23
    Experimental Treatments for Ebola.Sarah J. L. Edwards - 2014 - Research Ethics 10 (3):126-128.
  46.  7
    Risk adapted regulation of clinical trials.Sarah J. L. Edwards - 2014 - Research Ethics 10 (1):2-5.
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  47.  59
    The Role, Remit and Function of the Research Ethics Committee — 5. Collective Decision-Making and Research Ethics Committees.Sarah Jl Edwards - 2011 - Research Ethics 7 (1):19-23.
    Part 5, the concluding essay in the series describing and discussing the role, remit and function of research ethics committees, bases an enquiry into the nature of decision-making by research ethics committees on the processes followed by the committees in their deliberations leading to the final outcome.
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  48. New Beginnings.David Hunter & Sarah Edwards - 2011 - Research Ethics 7 (1):1-3.
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  49. Reconstructing communities in cluster trials?Sapfo Lignou, Sushmita Das, Jigna Mistry, Glyn Alcock, Neena Shah More, David Osrin & Sarah Edwards - 2016 - Trials 17 (166):1-11.
    BACKGROUND: There is growing interest in the ethics of cluster trials, but no literature on the uncertainties in defining communities in relation to the scientific notion of the cluster in collaborative biomedical research. METHODS: The views of participants in a community-based cluster randomised trial (CRT) in Mumbai, India, were solicited regarding their understanding and views on community. We conducted two focus group discussions with local residents and 20 semi-structured interviews with different respondent groups. On average, ten participants took part in (...)
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  50.  13
    Editorial: the unexpected power of research ethics.Doris Schroeder, Kate Chatfield & Sarah Edwards - 2020 - Research Ethics 16 (1-2):1-3.
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