The Ethics and Health Unit (ETX) is pleased to present their latest publication. In December 2010, ETX and the Stop TB department at WHO jointly published the guidance document 'Guidance on ethics of tuberculosis prevention, care and control'. This publication represents the fruits of the taskforce on Ethics and TB established by ETX and the Stop TB department. This document is the first of its kind and is available in English here: http://whqlibdoc.who.int/publications/2010/9789241500531_eng.pdf. It is currently being translated into the 5 other official UN languages.
At its second meeting in April 2008, the WHO Task Force on XDR-TB recommended the production of a guidance document on “Ethics of TB care and control”. Following this recommendation, the Ethics and Health Unit of the Department of Ethics, Equity, Trade and Human Rights and the Stop TB Department jointly established a WHO Task Force on Addressing Ethical Issues in TB Care and Control Programmes in August 2008. Twenty-two members were nominated from a variety of fields, including National TB Programmes, Civil Society, Ethics, Human Rights and Health Law. The aim was to undertake an analysis of selected priority ethical issues in TB and to support the development of WHO guidance in order to help governments and their national TB programmes, TB service providers, policy-makers and civil society and other stakeholders implement TB prevention, care and control efforts in an ethical manner.
Discussion papers on the following topics were commissioned and authored by experts on the taskforce:
1) Access to diagnosis and treatment
2) Obligations and rights of health-care workers and patients
3) Public health measures
These papers are in the process of being published in the International Journal of Tuberculosis and Lung Disease, in a special supplement on Ethics and Social Determinants of Health (June 2011). The Task Force held its first meeting in December 2008 at the Joint Centre for Bioethics at the University of Toronto. Members discussed the background papers prepared for the meeting and the main points to be included in the global guidance document. The Task Force gathered again in August 2009 and drafted the outline for the guidance. In October 2009 a consultation with additional representatives of civil society and national TB programmes enabled further valuable input. A refined outline was endorsed by WHO’s Strategic and Technical Advisory Group for Tuberculosis (STAG-TB) in November 2009, and received further input at the 40th Union World Conference on Lung Health in December 2009. Since its publication, ETX has been working on several projects focusing on the implementation and dissemination of the guidelines. ETX has been organising on-site country workshops, delivered to disseminate the guidance material to national TB programme managers. As part of this, ETX has developed an annotated facilitator's guide with illustrative case studies for group discussion. These offer concrete examples of ethical dilemmas that decision-makers face in defining and pursuing TB policies and programmes, and illustrate some of the challenges and solutions proposed in the ethics guidance document. The first of these workshops took place in Athens and The Hague last year. In April 2011, a similar regional activity was organized in Guatemala, and the next workshop will be held in China 8-9 June 2011.
ETX is also in the process of developing an online training course on Ethics and TB, with the support of the University of Miami Ethics Programs, a WHO Collaborating Centre. It is envisaged that this training course will primarily target healthcare managers, policymakers, and national TB programmes. But the audience for this tool could also include other stakeholders in TB services such as frontline staff and healthcare workers involved in rendering TB services.
ETX and the Stop TB department are also developing mechanisms for monitoring the impact of this document. This monitoring framework will consider the extent to which, first, the ethics guidance has been incorporated into formal policies on the country and programme level; second, those policies actually being followed in day-to-day practice; and, finally, changes in policies and practice actually improve the lives and health of individuals and communities affected by TB, with attention to social justice considerations.
The chapters of the guidance document consider the following:
1. Overarching goals and ethics values
2. The obligation to provide access to TB services
3. Information, counselling and the role of consent
4. Supporting adherence to TB treatment
5. The gap between the availability of drug susceptibility testing and access to M/XDR-TB treatment
6. Healthcare workers rights and obligations
7. Involuntary isolation and detention as last-resort measures
8. Research on TB care and control