Swiss Re Pandemic Risk Talk WHO guidance on ethical issues in
TB care and control WHO guidance on ethical issues in TB care and
control Andreas Reis Department of Ethics, Equity, Trade and Human
Rights Ernesto Jaramillo Stop TB Department
Slide 2
DOTS Expansion Working Group meeting 2009, 13 October 2009 What
is Ethics? A discipline dealing with what is good, right, and fair,
and with moral obligations and rights. A process to seek agreement
when values are in conflict. "Fair processes to reach fair
outcomes".
Slide 3
DOTS Expansion Working Group meeting 2009, 13 October 2009
"Science and ethics tell us what we must do." Dr Margaret Chan to
the World Health Assembly, 2006 Why address ethical issues in TB
care and control? WHO's 11th General Programme of Work defines six
core functions for the organization, one of them being:
"Articulating ethical and evidence-based policy options"
Slide 4
DOTS Expansion Working Group meeting 2009, 13 October 2009 THE
ATLANTA JOURNAL- CONSTITUTION : TB DIAGNOSIS DOES NOT REPEAL A
PERSON'S RIGHTS BYLINE: BOB BARR; For the Journal- Constitution
When I was a young boy, growing up in the early 1950s before the
Salk vaccine became widely available against polio, pictures of
boys and girls lying in "iron lung" machines struck fear into our
hearts. Having to spend one's life captive to a body- sized metal
cylinder in order to breathe was terrifying, and the risk of
contracting polio was real. Thanks to the miracles of post- WWII
medicines, however, the risk of diseases like polio has been
largely, if not quite entirely, eradicated from life in these
United States. In the post-9/11 world, however, every incident
involving a remotely serious possible problem becomes a headline
story to be red- flagged and repeated endlessly, until it becomes
all-consuming and takes on an aura of importance it may very well
not deserve. Why address ethical issues in TB care and control?
Drug-proof TB strain poses ethical bind Man locked up indefinitely,
sparking civil liberties debate The Associated Press updated 6:01
p.m. ET April 2, 2007 PHOENIX - Behind the county hospital s tall
cinderblock walls, a 27-year-old tuberculosis patient sits in a
jail cell equipped with a ventilation system that keeps germs from
escaping. Robert Daniels has been locked up indefinitely, perhaps
for the rest of his life, since last July. But he has not been
charged with a crime. Instead, he suffers from an extensively
drug-resistant strain of tuberculosis, or XDR-TB. It is considered
virtually untreatable. Is it ethical to provide TB treatment
without quality counselling? March 20th, 2009 - 11:00 pm ICT by
admin By Bobby Ramakant (CNS) How ethical is it to providing
treatment for anti-TB drug resistance without quality counseling?
The treatment literacy, infection control, toxicity and
side-effects related to the treatment, adherence and a range of
other issues need to be addressed in counseling sessions, believes
the activist from the West Bengal Network of people living with HIV
(BNP+) in India. This indeed provides a food for thought for
delegates of the 3rd Stop TB Partners Forum (Brazil: 23-25 March
2009) and the high-level ministerial meeting on drug-resistant TB
(Beijing, China: 1-3 April 2009). Detention and the Evolving Threat
of Tuberculosis: Evidence, Ethics, and Law Richard Coker 1,
Marianna Thomas 2, Karen Lock 3, and Robyn Martin 4 1 Reader in
Public Health in the Department of Public Health & Policy at
the London School of Hygiene and Tropical Medicine. 2 Honorary
Research Fellow in the Department of Public Health & Policy at
the London School of Hygiene and Tropical Medicine. 3 Lecturer in
Public Health in the Department of Public Health & Policy at
the London School of Hygiene and Tropical Medicine. 4 Professor of
Public Health Law at the Centre for Research in Primary and
Community Care at the University of Hertfordshire, U.K. Copyright
2007 American Society of Law, Medicine & Ethics, Inc.
Slide 5
DOTS Expansion Working Group meeting 2009, 13 October 2009
Ethical guidance is needed to support countries to solve existing
problems TB is primarily a disease of poverty and therefore raises
issues of social and global justice Public health measures aimed at
TB control can sometimes create challenges in terms of balancing
the rights of different individuals Stigmatization and
discrimination occur in the context of TB TB has received
comparatively little attention by human rights and bioethics
Ethical issues have been highlighted by the emergence and spread of
MDR/XDR-TB Why address ethical issues in TB care and control?
Slide 6
DOTS Expansion Working Group meeting 2009, 13 October 2009
Basis: Moral duty and ethical responsibility for all stakeholders:
National TB programs, health care providers, patients, communities,
donors, researchers, etc. "Added value" of respecting ethical
norms: Maximize acceptability of TB programs among patients &
communities Enhance adherence and improve program and patient
outcomes Maintain public trust regarding research activities and TB
programmes Why address ethical issues in TB care and control?
Slide 7
DOTS Expansion Working Group meeting 2009, 13 October 2009
Diagnosis and Treatment Obligations and Rights of Health Care
Workers, Patients, and Communities Liberty-restricting Measures
(e.g. isolation) TB Research Main areas where ethical issues need
to be addressed
Slide 8
DOTS Expansion Working Group meeting 2009, 13 October 2009 Do
wealthy countries have an obligation to improve access to care in
poorer countries and / or to promote the development of new drugs
and diagnostics? Is it ever appropriate to deny treatment in case
of apparent, or expected, treatment failure and/ or non- adherence?
Should diagnosis of MDR-TB occur in contexts where second-line
drugs are not available? How should privacy and informed consent in
the context of directly observed therapy be managed? Ethical issues
regarding diagnosis and treatment
Slide 9
DOTS Expansion Working Group meeting 2009, 13 October 2009
Where are the limits of the "duty to care" for HCWs ? Can
HIV-positive health care workers be expected to care for patients
with suspected TB or MDR-TB? Do patients have the right to decline
treatment? Obligations and rights of health care workers and
patients Medical Institute, Beijing, Photographer: Pierre
Virot
Slide 10
DOTS Expansion Working Group meeting 2009, 13 October 2009 How
should the goal to protect public health be balanced against the
goal to protect individual rights and liberties in the context of
TB? Is it ethically acceptable to isolate and treat MDR/XDR-TB
patients against their will? Dilemmas in the context of
liberty-restricting measures
Slide 11
DOTS Expansion Working Group meeting 2009, 13 October 2009 Are
there morally relevant differences between research and
surveillance? What are the ethical requirements of surveillance
programs? Should research, such as drug resistance surveys, be
conducted if treatment is not available? Dilemmas in the context of
TB research
Slide 12
DOTS Expansion Working Group meeting 2009, 13 October 2009
Established in August 2008 by the Ethics and Health Unit and the
Stop TB Department of WHO, following the recommendation of the WHO
Task Force on XDR-TB at 2nd meeting (April 2008) Goals: - to
identify key ethical questions that arise in TB programmes and
potential solutions - to advise WHO on a broad range of ethical
issues related to TB care and control, with the ultimate goal of
developing guidance for national TB programs Task Force on Ethical
Issues in TB Care and Control
Slide 13
DOTS Expansion Working Group meeting 2009, 13 October 2009
Composition: 22 Members from NTP, Civil Society, Ethics, Human
Rights, and Health Law Milestones: 08-10 December 2008:1 st Meeting
of the Task Force (Toronto) 26-28 August 2009: 2 nd Meeting of the
Task Force (Geneva) 15 October 2009:Consultation (Geneva) November
2009:Present draft guidance to STAG Meeting early 2010:Publish and
disseminate final document 2010:Trainings and capacity-building
Task Force on Ethical Issues in TB Care and Control
Slide 14
DOTS Expansion Working Group meeting 2009, 13 October 2009
Consultation on Ethical Guidance for TB Control and Care Programs
When: 15 th October, 9.00 17.30 Where: WHO HQ, Salle C.102 Who:
National TB Program Managers, Civil Society Purpose: To discuss
outline of WHO guidance document on Ethics & TB Informal
invitation
Slide 15
DOTS Expansion Working Group meeting 2009, 13 October 2009
Ethics & TB Task Force Paula Akugizibwe, ARASA, Namibia Ron
Bayer, Columbia University, US Solomon Benatar, U. of Capetown, SA
Jeff Blackmer, Can. Med. Assoc. Oscar Cabrera, Georgetown U., US
Richard Coker, LSHTM, UK Angus Dawson, U. of Toronto, Canada Anne
Fanning, U. of Alberta, Canada Michel Gasana, NTP Rwanda Case
Gordon, World Care Council Larry Gostin, Georgetown U., US
Acknowledgements Dirceu Greco, U. of Minas Gerais, Brasil
Przemyslaw Musialkowski, Council of Europe, Poland Pr.R. Narayanan,
TB Res. Center, India John Porter, LSHTM, UK Rajeswari
Ramachandran, Tuberculosis Research Centre, India Lee Reichmann,
New Jersey Med. School, US Michael Selgelid, Australian National U.
Julia Seyer, World Medical Association Jerome Singh, U. of Kwa-Zulu
Natal, SA Ross Upshur, Joint Center f. Bioethics, Toronto, Canada
Lyn Vianzon, NTB Philippines Xie Xiu Wang, CDC China WHO:
Marie-Charlotte Bousseau, Carl Coleman (consultant), Ernesto
Jaramillo, Andreas Reis, Diana Weil, Matteo Zignol
Slide 16
DOTS Expansion Working Group meeting 2009, 13 October 2009
Thank you very much! Contact: [email protected]
Slide 17
DOTS Expansion Working Group meeting 2009, 13 October 2009
Should treatment be denied to patients in whom treatment is very
likely to fail or adherence is virtually impossible (e.g. refugees,
migrants)? What practice is ethically acceptable regarding patients
who are still infectious, but have exhausted all treatment options?
Should rapid diagnostic methods be deployed in the field when the
capacity to properly manage MDR-TB, including quality-assured
drugs, is not readily available? Should research, such as drug
resistance surveys, be conducted if treatment is not available? Is
it ethically acceptable to isolate and treat MDR/XDR-TB patients
against their will? Can HIV positive health-care workers be
expected to care for patients with suspected TB or MDR-TB? Some
questions for the discussion