1 comment on “Perceptions of EVD Research — August 2017 Progress Report”

Perceptions of EVD Research — August 2017 Progress Report

One year into this project, we are finalizing data collection, moving forward with analysis, and have begun dissemination activities. Progress includes:

Fieldwork:

  • We have conducted interviews with 108 stakeholders, over 90% of these being with stakeholders in the three countries most severely affected by the epidemic: Guinea, Liberia, and Sierra Leone.
  • Stakeholders include:
    • Research participants, people who opted not to participate in research projects for which they were solicited, and proxy-decision makers who made treatment decisions for relations too ill to provide consent
    • Research Ethics Board members who evaluated proposed research projects, either for national-level boards serving affected countries or for organization-specific boards operating within international organizations that assisted with the response
    • Investigators who led or supported research projects conducted during the outbreak, as well as healthcare providers who worked on the frontlines of the epidemic, administering experimental interventions and monitoring patients’ condition
    • Public sector representatives who were called on to oversee or regulate research conducted during the epidemic: decision-makers in health and other ministries involved in planning the response to the epidemic; representatives of Ebola survivors’ associations and other civil society groups; others
  • We have spoken to people involved with a range of research projects: vaccine trials, pharmaceutical and other intervention trials, and observational studies.

Analysis:

  • We have conducted a review of publications exploring or addressing ethical and practical challenges associated with research conducted in West Africa during the Ebola outbreak. Over 2,000 peer-reviewed articles were selected for screening by members of the research team; of these, over 100 were selected for inclusion in the review. Findings are currently being written up for publication.
  • Analysis of interviews is underway. Draft report of findings will be ready by November 2017.
  • We are preparing meetings to present and discuss draft report of findings with stakeholders and research participants in West Africa in November-December 2017. Participants’ feedback will be incorporated into analysis and output materials.
  • We are preparing a meeting of co-investigators in Hamilton in December 2017. This will serve to finalize findings, prepare a recommendations draft paper, and finalize components of a webinar (to be held in January).
EVD Report Pic
Photo: Ebola education mural outside Université Sonfonia, Conakry, Guinea.

Outputs to date

Invited Presentations

Nouvet, Elysée (2016) Recherche anthropologique au service de la santé publique : méthodes, considérations, et EER (évaluation ethnographique rapide). Training session presented to the Comité National d’Évaluation de la Recherche en Santé (CNERS), Conakry, Guinée, le 19 décembre

Schwartz, Lisa (2016) L’éthique de recherche socio-anthropologique. Training session presented to the Comité National d’Évaluation de la Recherche en Santé (CNERS), Conakry, Guinée, le 19 décembre

Peer-Reviewed Presentations

Nouvet, Elysée & Schwartz, Lisa (2017) From the front lines: Trialing research ethics in the time of Ebola. Paper presented at the World Association for Disaster and Emergency Medicine Congress on Disaster and Emergency Medicine. Toronto, Canada. April 28th

Nouvet, Elysée (2017) The need to care, learn, and improvise: Enacting research ethics during the West Africa Ebola outbreak. Paper accepted for presentation at Ethox: Oxford Global Health and Bioethics International Conference. University of Oxford, Oxford, England. July 17-18th

Pringle, John (2017) Lessons in research ethics: Experiences of clinical research participation during the West Africa Ebola crisis. Paper accepted for presentation at Ethox: Oxford Global Health and Bioethics International Conference. University of Oxford, Oxford, England. July 17-18th

Workshop Participation

Pringle, John. Ethical Design of Vaccine Trials in Emerging Infections Workshop. Hosted in conjunction with the Oxford Global Health and Bioethics International Conference and Sponsored by a Wellcome Strategic Award and the Ethox Centre. University of Oxford. July 18-19, 2017

 

0 comments on “Call now open for GFBR 2017”

Call now open for GFBR 2017

The Global Forum on Bioethics in Research will hold a two-day meeting in Bangkok, Thailand, on 28-29 November 2017 on the theme of: the ethics of alternative clinical trial designs and methods in low- and middle- income country research.

The CALL IS NOW OPEN for:

  1. CALL FOR CASE STUDIES
  2. CALL FOR PROPOSALS ON GUIDANCE AND POLICY ISSUES
  3. CALL FOR PARTICIPANTS

See the following link for more details and information:

http://www.gfbr.global/news/call-now-open-2017-gfbr/

If you have any questions about this call please email gfbr@wellcome.ac.uk.

All applications should be sent to gfbr@wellcome.ac.uk by 21.00 BST on Tuesday 30 May 2017, in English. Please specify in the subject line whether you are applying to attend, present a case study or present on guidance or a policy issue. Applications received after the deadline will not be considered.

0 comments on “Justice in the Humanitarian Context – Maxwell Smith”

Justice in the Humanitarian Context – Maxwell Smith

msmithMaxwell J. Smith, PhD, MSc

Banting Postdoctoral Fellow, Institute for Health and Social Policy, McGill University

During the 2009-2010 H1N1 influenza pandemic I began working as a research coordinator with the ‘Canadian Program of Research on Ethics in a Pandemic’ (CanPREP).  Hosted at the University of Toronto’s Joint Centre for Bioethics, this program of research involved engaging the Canadian public on ethical issues in pandemic preparedness and response (e.g., the use of restrictive measures like quarantine;1 physicians’ duty to care;2 setting priorities for scarce resources;3 and issues pertaining to global governance4).  What became apparent to me when examining the ethics discourses in pandemic planning and response was that a common and unsubstantiated assumption exists; namely, that the ethics of global public health emergency preparedness and response is perceived as being distinct from the way we think about ethics in what might be considered ‘quotidian’ public health.  For example, Kirkwood suggests that “there must be an ‘escalator clause’ in the utilitarian aspect [of resource allocation] that suggests that in the event of an extensive threat to the existence of a population, the force of this utilitarian aspect becomes the primary consideration in proportion to the threat…the greater the threat, the greater the moral force of utilitarianism in making public health decisions”.5  As another example, Veatch asks whether, in public health emergency preparedness and response, we should “retreat to the utilitarian ethic, making an exception to the ethic of justice that generally prevails in American ethics”.6  Do we tend to be more utilitarian in the way we think about preparing for and responding to public health emergencies as compared to the way we make public health decisions in non-emergency contexts?

This question motivated me to focus my doctoral research on examining the extent to which the perspectives of Canadian public health policy-makers involved in public health emergency preparedness and response are similar or different than those involved in other areas of public health, like chronic disease prevention, specifically in regards to how social justice is conceptualized and negotiated in their work.  Using qualitative interview methods, I found that the perspectives of my study’s participants appeared to be influenced by the perceived goals and contextual features that belong to the programmatic area of public health in which they practiced.  For instance, policy-makers involved in public health emergency preparedness and response described this area’s principal aims as saving the most lives and producing the ‘greatest good’.  Justice-based considerations, interpreted almost entirely in terms of equity, were perceived as being external, or even as being impediments, to these consequentialist, if not utilitarian, aims.  Policy-makers involved in chronic disease prevention, on the other hand, described this area’s central aims in terms of equity and justice; its purpose involves understanding and targeting the unique needs of different populations in order to produce equitable outcomes.  On my interpretation, my study’s findings indicate that the perceived role of social justice considerations in public health emergency preparedness and response may be distinct from how their perceived role in chronic disease prevention; where justice-based considerations are perceived to be part and parcel of the aims of chronic disease prevention, they are perceived as external to, if not constraints upon, the ‘prior’ aim of public health emergency preparedness and response, which is to minimize morbidity and mortality for the greatest number.  The findings of this study have led me to consider whether the way we think about justice in the humanitarian context might be distinct from how we think about justice in public health and global health more generally, and if so, whether this is ethically justifiable.

  1. Smith MJ, Bensimon CM, Perez D, Sahni S, Upshur REG. (2012). Restrictive Measures in an Influenza Pandemic: A Qualitative Study of Public Perspectives. Canadian Journal of Public Health, 103(5): 348-352.
  2. Bensimon CM, Smith MJ, Pisartchik D, Sahni S, Upshur REG. (2012). The Duty to Care in an Influenza Pandemic: A Qualitative Study of Canadian Public Perspectives. Social Science & Medicine, 75(12): 2425-2430.
  3. Silva DS, Gibson JL, Robertson A, Bensimon C, Sahni S, Maunula L, Smith MJ. (2012). Priority Setting of ICU Resources in an Influenza Pandemic: A Qualitative Study of the Canadian Public’s Perspectives. BMC Public Health, 12: 241-252.
  4. Thompson A, Smith MJ, Bensimon CM, McDougall C, Perez DF. (2015). “With Human Health it’s a Global Thing”: Canadian Perspectives on Ethics in the Global Governance of an Influenza Pandemic. Journal of Bioethical Inquiry, 12(1): 115-127.
  5. Kirkwood, K. (2010). In the Name of the Greater Good? Emerging Health Threats Journal, 2(E12), 1-3.
  6. Veatch, R. (2005). Disaster Preparedness and Triage: Justice and the Common Good. The Mount Sinai Journal of Medicine, 72(4), 236-241.

Max Smith is a Banting Postdoctoral Fellow at the Institute for Health and Social Policy at McGill University. 

0 comments on “Final Conference of the COST Action IS 1201 “Disaster Bioethics””

Final Conference of the COST Action IS 1201 “Disaster Bioethics”

Final Conference of the COST Action IS 1201 “Disaster Bioethics”

Dublin City University, Ireland
3-4 October 2016

Call for papers

Those interested in presenting a paper or poster at the conference should submit an abstract of no more than 250 words by 31st July 2016. The abstract should be attached as a Word document to an email addressed to DisasterBioethics@dcu.ie with “DUBLIN Abstract” in the Subject line. The email should state clearly if you wish to present orally, or with a poster, or either. Oral presentations will be for 20 minutes, followed by 5 minutes Q&A.

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