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Tuberculosis and the Ethics
of Shared Responsibility
Ross E.G. Upshur,
BA(HONS), MA, MD, MSc, CCFP, FRCPC
Canada Research Chair in Primary Care Research
Professor
Department of Family and Community Medicine
University of Toronto
16TH ANNUAL CONFERENCE OF THE UNION-NORT​H AMERICA REGION
San Antonio
February 2012
Learning objective
Participants will be able to:
Make clinical and programmatic decisions
which will serve tuberculosis patients based
on an understanding of the relationship
between ethical values, human rights and
disease control
The Challenge
• Responding to drug-resistant tuberculosis is one
of the most profound challenges facing global
health.
• Our response to the emergence of drug-resistant
TB is profoundly ethical as it raises issues of how
justice and human rights are realized in our
collective response to a disease. It also
underscores how the global community responds
to its most disadvantaged members.
What does it mean to know a disease?
• What is disease?
• Standard nomenclatures or approaches to
knowing in medicine
• On any standard, I argue we “know” more
about TB than any other human affliction.
• The question: Why has this not made a
difference?
Why be concerned with ethics?
Decision-makers and clinicians need a moral compass
Difficult decisions will have to be made.
How, why, when & by whom?
Accountability and Justification essential.
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Why has tuberculosis been neglected by
ethicists?
1. Infectious Diseases no
longer considered
relevant
2. Ethics concerned with
high technology
3. The other
4. Complexity
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Why is ethics important to Tuberculosis control?
• Tuberculosis raises unique
ethical issues
• Proper treatment and
programmatic decisions
require integration of
normative and empirical
considerations
• Challenge traditional and
familiar concepts (e.g.
autonomy, physicianpatient confidentiality)
• Universal vulnerability
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Integration of Levels of Ethical Reflection
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Personal Ethics
Clinical Ethics
Professional Ethics
Organizational Ethics
Public Health Ethics
Global Health Ethics
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Which Values?
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Autonomy/ Respect for persons
Beneficence
Non-maleficence
Justice
Which Values?
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Reciprocity
Solidarity
Social Justice
Trust
Common Good Arguments
Human Rights
• Enshrine ethical norms into legally
enforceable instruments
• Internationally agreed upon sets of principles
and norms contained in treaties, conventions,
declarations, resolutions etc
• Government obligations to respect, protect
and fulfill these obligations
• Rights law defines what governments can do
to us, cannot do to us and should do for us
TB Patients Bill of Rights
– Rights to: Care, Dignity, Information, Choice,
Confidence, Justice, Organization, Security
– Responsibility to: share information, follow
treatment, contribute to community health,
solidarity
Ethical Processes
 Ethical Decision-Making Processes are:
Open and Transparent
Reasonable
Inclusive
Responsive
Accountable
Address issues of power imbalance
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• Drug-resistant TB, particularly the emergence
of XDR-TB, is evidence of a new form of
regression: we have taken the curable and
made it nearly incurable. The tendency has
been to blame the most vulnerable and
powerless – the patients who were unable, for
a multitude of reasons, to follow treatment
through to completion. It is time to recognize
that we collectively bear responsibility for this.
• The serious task of stopping the progression
to complete drug resistance is also a collective
responsibility of all involved in health care. If
we cannot manage a disease as well known as
TB, we have little justification to be stewards
of the significant amount of resources given to
health care globally.