Bookmarks

The MARC project - Mapping of research ethics review and trial regulatory capacity in Africa - launched an online review platform for Research Ethics Committees: the Research for Health and Innovation Organiser (RHInnO) platform. The platform was demonstrated at the Forum 2012 in Cape Town, South Africa. The purpose of the platform is to facilitate an efficient ethical review clearance of clinical research involving human subjects.

International standards require that protocols of clinical research are reviewed by an independent research ethic committee (REC). However, many RECs in Africa lack the tools to coordinate efficiently the submission and review of protocols and timely communication to researchers. They face an increasing amount of paperwork. Resources and knowledge exchange are also limited.

RHInnO Ethics was created by the Web4Development team at the COHRED group. It aims to speed up the review process by improving efficiency. The system provides research ethics committees with a secure, web-based solution for tracking research applications throughout the entire life-cycle of the research project. This will improve control of research activities by the RECs and will contribute to safer management of submitted materials and minimize delays in communication within RECs and with researchers. Moreover, RHInnO will enable the committees to share standardised research regulation documents e.g. standard operating procedures and research review guidelines.

RHInnO takes away the complex process of creating paper-based data collection using a simple web application. The system offers a secure platform that allows users to enter and manage information about research projects and proposals, including principal investigator, reviewers, funding source, attachments, descriptions, comments and supporting documents. All available data is encrypted. Different interfaces are available, providing users access to specific information. Users can access a list of recent actions and alerts (e.g. the system will alert when a project is not complete, or when a new project has been submitted or approved). In addition, the system sends reminders to different user profiles (i.e. administrators, reviewers, researchers) to respond to pending requests promptly.

About MARC
The MARC project is an initiative funded by the European and Developing Countries Clinical Trials Partnership (EDCTP), and implemented through collaboration between the Council on Health Research for Development (COHRED) in Geneva, Switzerland and the South African Research Ethics Training Initiative (SARETI) at the University of KwaZulu-Natal, South Africa.

The MARC project (Mapping of ethics review and trial regulatory capacity in Africa) aims to develop an interactive and continuously updated map of Africa’s health research ethics committees (RECs) and to provide a web-based platform to increase contact and communication between these committees. A secondary objective is to map medicines regulatory authorities (MRAs) and facilitate a better contact between these authorities and research ethics review committees.www.researchethicsweb.org

WASHINGTON, D.C. - On March 28, the U.S. Agency for International Development (USAID) issued a new Scientific Integrity Policy to safeguard the quality and integrity of the Agency's scientific and scholarly activities. Spurred by a 2009 directive from President Obama and subsequent guidance from the White House, this policy articulates the principles regarding how scientific and scholarly activities are supported and carried out, and how research findings are used and disseminated.

Specifically, the policy outlines guiding principles for the entire Agency that will:

* Protect the scientific process from misconduct and from inappropriate influence;

* Promote access to scientific and technical information;

* Maintain a highly skilled technical and scientific staff;

* Convene and use federal advisory committees ethically and transparently; and,

* Ensure quality, methodological rigor, and ethical standards in all USAID-funded research activities.

Many of these principles already align with the high integrity that USAID staff maintain when conducting scholarly activities. The intention of this policy is to capture and employ these best practices throughout the Agency and introduce new ways that USAID can enhance the use of science for development.

To read the policy, visit http://www.usaid.gov/scitech/integrity.pdf (pdf, 441kb)

Conference

Patients’ Wishes in Regard to Their Life’s End. Moral Understandings of the ‘Wish to Die’ and Ethical Implications: 1-2 June 2012; University Hospital, Spitalstrasse 21, 4031 Basel, Switzerland

Based on the results of a qualitative interview study conducted with 30 palliative care patients 2008-2011 in different palliative care situations in Switzerland, the conference explores terminally ill oncology patients’, their relatives’ and their caregivers’ perspectives on the phenomenon of a ‘wish to die’. Key ethical issues and
consequences for palliative care practice and education shall be identified and discussed
using different normative, narrative, hermeneutic, relational and phenomenological
approaches.
The research project: “Terminally ill patients’ wish to die. The attitudes and concerns
of patients with incurable disease about the end of life and dying” was conducted
at the Unit of Ethics in the Biosciences at the University of Basel, funded by Oncosuisse, the Gottfried und Julia Bangerter-Rhyner-Stiftung, and the Förderstiftung of
the hospice of Arlesheim. The project is now affiliated at the Institute of Bioethics
IBMB, University of Basel.